Something.

As I crossed the narrow road at a roundabout in Covent Garden I saw a man that looked like him. Maybe a version 20 years older than him - disheveled and street-wise. He'd lived life, maybe not dissimilar to the man I loved. I was on my way to see Matilda on the West End. This man startled me as I marvelled, yet again, that I was in fact in London.

I don't recognise people very well. I worry that I'll forget what he looked like, if it wasn't for that pesky photo of us on my phone, that all the synching of the Apple can't seem to remove. This man in Covent Garden, he was a dead ringer. The same features - nose, bright blue eyes, wide smile and thinning hair. And I felt sick (so much so that I sat down and wrote these paragraphs into my phone, I knew there'd be a story down the track).

He said hello, offered me his arm to guide me across the road. He spoke to me, friendly and tripping over his words and curious from the drink. He asked me what was wrong with my face. Concerned and curious. Frustrated that I couldn't change things.

And so was I. Though I was frustrated I couldn't change a different set of things.

-

It's been a long time since things changed between us. I am all the better for it, and I know he is too. I've had just over six months to get used to this milestone in his life. Last September, I wrote him a letter, farewelling him from my life. I signed off:

So I'll leave you be, remembering you with fondness, sadness and love. I am glad that I played a part in saving your life.

And just like that, he was gone. Sort of. Of course, he's still here in my heart. I think about him sometimes. This week especially. One of his dreams has come true. He's happy.

I imagined this week would come at me like with a thud, that I'd be worn out by emotions and over thinking, and that my tears would make my face hurt. But none of that happened. Is this it? There was no emotional catastrophe. But there was something. Something less than I expected and something bigger than I thought I was capable of. I felt a mixture of something.

While I no longer feel like I love him, it's hard not to feel something. Reflection. Happiness for him. Wondering and a little sadness at what might have been. Sick of carrying the cumbersome yet beautiful memory of him with me - though the load's becoming lighter. It's as though I've made progress.

All of the relevant song lyrics are floating through my space. For a little while, all I could do was play this song over and over.

And I'm relieved I feel something. It reminds me I have loved. I've given myself permission to feel something, rather than beating myself up over feelings I cant control, even though I constantly worry that it's not right to feel so much over someone I had very little time with - to miss somebody that I never really had. Because when others are suggesting I haven't moved on, I know my heart is full (for me and for him), and my skies are no longer grey.

Glen Hansard and The Frames at Melbourne Recital Centre/ Once on Broadway

Last year, on my last day in New York, my Mum and I saw a Broadway show. It was Once - the award winning film. And it was one of my favourite things about my trip away.

 

Once, written by Glen Hansard, who also stars in the film with Marketa Irglova (they were in The Swell Season together), is about an Irish busker/vacuum cleaner technician who falls in love with a Czec pianist. it is a beautiful story, complemented by music that both Hansard and Irglova write and play.It features the beautiful song Falling Slowly, which you may be familiar with.

 

The stage was set up as an Irish bar so before the show, audience members could buy a drink.

I took these sneaky pictures during the show, and was almost evicted...

The performance was so lively, so uplifting, and I felt the music in my bones. The live Irish music was played so well. It felt like we were at a pub, watching a scene at a bar. I preferred the live performance to the film. Absolutely mindblowing.

And I had 'Falling Slowly' in my head the whole flight home.

So when I saw that Glen Hansard and The Frames were playing in Melbourne, I had to buy myself a ticket straight away.

Glen Hansard was supported by Irish singer Lisa Hannigan, whose voice was a bit like Lisa Mitchell. She later supported him on a few songs, including a Woodie Guthrie cover of which neither of them could remember the lyrics and so giggled hysterically.

I sat behind the gorgeous Julia Stone at the show - I had a chat with her during the break between Lisa and Glen.

The Melbourne Recital Centre was so beautiful, and my photos don't do it justice. I had previously been there when I won a Yooralla Media Award. At one stage, Glen spoke about how imposing a venue like the Recital Centre can be, and encouraged us to relax and have fun.

I went into the concert not knowing many songs - I do have The Swell Season CDs and the Once soundtrack and DVD - and came out wanting to devour everything Glen Hansard and The Frames had ever made. I loved 'Falling Slowly', 'When Your Mind's Made Up', 'Star Star' and 'Leave'. Scrap that, I loved all of the songs!

He indicated embarrassment that the ads for his tour placed him front and centre, and gave lots of credit to his band The Frames, part of which have been playing together for many years. The Frames were made up of percussionists, a keyboardist, a brass band, a string set and guitarists. It was a wonderful arrangement.

Glen, with a bushy ginger beard (noting during the show that his mate and he grew big beards last year - "beards that said "I hate women") told lots of anecdotes on the stage. He's really proud of his Irish heritage and talked about the way Australian celebrate St Patrick's Day. He was very funny. He also talked of a friend dying of cancer, biut living his last six months to the fullest, and dedicated a song to him.

They played for almost three hours, Glen said that "we wrote a long list of songs, and played a longer list". After one encore, a few of his band members and he did an acoustic set on the edge of the stage. Below is a picture of everyone doing a cover of Leonard Cohen's passing Through. The previous night, the band played in a procession through the foyer and took the audience onto the street (see video at the end of this post).

 

I loved the way Glen Hansard gave it his all. He is such a passionate performer. And my other favourite thing was his interpretation of covers - a R.E.S.P.E.C.T at the end of 'Love Don't Leave Me Waiting' was fun, and the string players' renditions of 'Twinkle Twinkle Little Star' and the 'Willy Wonka World of Your Imagination' song were magic.

Glen Hansard can whisper and he can roar. His voice is electric, and as I expected, I felt it through to my bones and soul. The concert left me feeling alive. This is what music is about.

 

Blogging tip: Write like someone's watching.

 

There's that saying, "Dance like nobody's watching" - where you're encouraged to let yourself go and just have fun, be silly and not be self conscious about what you may like when you're dancing. I'm a big believer in doing the opposite of this when blogging. As in, Write like someone is watching. Actually, write like someone influential is always watching. Write like someone's going to find you. Especially if being a published writer is something you've always aspired to. (This is not to say don't have fun with your writing.)

This mantra could mean be mindful of what you blog about. I believe this is very important as an employee, a parent, a friend, a partner and within the blogging community because you need to protect your reputation and privacy, not reveal too much about your family, friends and employer, and maintain good netiquette. But in this instance I mean you should write in such a way that others would want to publish your work. Blogging is such good practice. I've heard it being described by a prominent writer as "an apprenticeship". Use your blog to prove to an editor why you should and can write for their publication.

Write blog posts that can be pitched to other publications.

Ensure your blog posts contain correctly spelled words, good grammar and punctuation, and original content that has some currency, relevance and interesting and unique perspectives. And make sure your pictures are quality too - clear, and the right way up! While I tend to write more conversationally than formally, I follow a style guide to an extent - for example, using UK English, spacing after full stops and paragraphs (sometimes paragraphing is tricky when using HTML, especially blogging on blogging apps on the iPad, so do take care), the way I write numbers, and capitalisation in headings. I base my style a little on the style guide I use in my day job (a variation on the Commonwealth Style Manual), and a little on the journalism techniques I learnt at university.

Some online publications don't pay their writers, but they will take previously published blog content, and I believe this is a great way to get a start with freelance writing and get noticed more widely. I've submitted my original unedited blog posts to The Peach and Mamamia, and they've republished them, often with a little editing.

Other publications take original blog posts and ask the writer to edit them or have their own editor edit them - and offer payment. Last week's publication on Daily Life was an example of this - I had such a great response to my original blog post that I pitched it to the Daily Life editor, she suggested some changes, and I spent two hours editing my original piece to suit Daily Life. The spelling, grammar and content was already fine, so the only editing needed was reducing the word count and rejigging the order of some paragraphs.

Editors are also great at offering writers advice they can use for future pieces. I used to have a mentor in my day job who would make red pen corrections to everything I wrote and distributed to staff - after I'd distributed the messages - and then I'd review her corrections, and take these on board for the next time I wrote to staff. Each subsequent piece of writing was corrected less and less.

 

And other publications pay their writers but only accept previously unpublished content. So your blog is a great portfolio to show to prospective editors (and also PR companies if pitching for a sponsored post - like I did when pitching to the publicists at the Melbourne Food and Wine Festival) when submitting a pitch.

 

When I started this blog, I did it to develop my writing skills and also to create some sort of portfolio. And I refer to it in almost everything I pitch in my writing, speaking and TV work. Writing this blog has worked for me. Many people ask me advice on how they can get their message out there. I always recommend they start a blog, write a few pieces on their blog and use them (and the contacts built through blogging) to pitch to relevant media outlets. Your blog is your resume.

 

It's hard to write consistently. It takes practice and if you're writing from the heart, it can wear you out emotionally. I joked that writers (especially personal bloggers) should receive emotional compensation for giving a piece of themselves to readers. Sometimes you may write a blog post that comes from being inspired by a joyous or an upsetting event, or you're spilling your emotions onto the screen. I find these posts are always from the heart and often make me feel like I've run a marathon writing them and give me shivers when I read the ones written by others. They usually get the best reaction from readers because they're relatable and evoke empathy in the reader. And they deserve to receive a wider readership.

Here are some bloggers who write consistently high quality blog posts that could easily should be picked up by a range of other publications. They are well written and some have beautiful pictures accompanying the writing.

Edenland

Tiny Savages

Apples Under My Bed

Rellacafa

The $120 Food Challenge

Anna Spargo-Ryan

Big Words Blog

Jouljet

Be your own promoter.

A friend told me I am a good self promoter. I told him that if I don't promote my own work, who else will?! I use social media to promote my writing, and this has got me noticed. Don't be afraid to tweet your posts, share them in relevant Facebook groups, and pitch them to editors of relevant publications (I highly recommend doing a course at the Australian Writers Centre to learn about editing and pitching). Include social media sharing buttons on your blog too, so readers can easily share your work.

By promoting your writing, it gets seen and shared by a huge amount of people - some who could help you with your writing career.

Keep the testimonials you receive.

Screen shot blog comments, tweets and Facebook comments, especially testimonials from editors or prominent people, or members within the community or area of expertise you belong to (I keep positive messages from those in the Ichthyosis community for use on my resume).

Thank people who have helped you.

Finally, if someone helps you with your blog post or freelance writing, such as providing information or a quote, write back to them thanking them and including a scan of or link to your published piece. You never know if they'll offer to republish it or send it on to someone who will, or better still commission you to write an original piece for them!

I can no longer count just how many opportunities have come my way because of blogging. And it's all because I've made a conscious decision to write like someone's watching - and promote my blog posts so that someone does notice. Have confidence in your ability and don't be afraid to promote your blog.

It you've got any questions about blogging, do send them my way. I'm thinking of making blogging tips a regular feature on my blog. What do you think?

Previous blogging tips:

Invest in those who invest in you

Being a responsible employee and social media user

Social media and employees

Being a responsible patient on social media

Blogging as therapy

Taking your blog to the speaking circuit (guest post on Styling You)

What I know about writing (Tale Teller podcast)

Finding the blogging balance

Six tips for new bloggers

 

Sunday Snippets

I've spent the weekend at Camille's house - being her nurse-slave. I've not had to do any nursing or slaving. It's been really lovely hanging out with her, and the best thing is, Camille is doing so well after her transplant.

We've been shopping...

And eating...

And crafting - I made brooches and a hairclip...

And watching reality TV. I can always count on Cam to have a number of fashion, food and interior design shows saved up - though she thinks I'm weird because I said watching Hoarders will make me itchy!

Camille also designed me a new blog header - how awesome is it?! I've given my blog a spring clean too.

Must dash, we are catching up on Come Dine With Me. I fell asleep during last night's reality TV marathon, so I need to ensure I make today's marathon!

Happy Sunday to you!

I'm playing along with Tinniegirl's Sunday Snippets.

 

Losing some but winning heaps more.

Last night I told someone to fuck off as they were very rude about my appearance.

This is how it went:

Man at tram stop, staring: "What have you done to your face?"

Me: Nothing. I was born like this."

Man, shaking his head: "I don't believe it. Where were you born?"

Me: "Australia."

Man, laughing at me: "I don't believe it."

Me: "Fuck off."

I don't swear at people often but man, sometimes they deserve it. And it feels good.

(And it's ironic - or is it? Alanis always makes me wonder - when I've written this piece about having a conversation with people with visible differences that's generated so much discussion.)

While its important to educate people, it's also not unreasonable to want a break from it all. I'm not always polite when I get questions, especially when someone mocks my truthful answers. Sometimes a big "Fuck Off" is all that's needed when people are extremely rude, and that's ok too. I don't have to endure or be polite all the time.

But it's funny for all the rude people I meet (which aren't that many really), the wonderful people outweigh these tenfold. I was out last night to see the wonderful Glen Hansard and The Frames play at the Melbourne Recital Centre - a review is to come. In short - it was amazing.

Just before Glen came on stage, I popped out to get a drink, and on the way back, I saw someone who looked familiar sitting in the seat in front of mine. It was Julia Stone! She saw me, leapt up and gave me a big warm hug and we had a five minute chat. She's so lovely. And that little gesture, from someone I really admire, meant the world after the fuckwit I encountered earlier.

I lose some, but I win heaps more. Life's good!

 

Doing what I love. Jumping from the sky.

The more writing and speaking I do, the more I realise that's what I want to do. I want to make a living as a creative, I want to influence peoples' perceptions about visible difference and appearance and I want to be proud of everything I produce.

Yet after being securely employed for now over one third of my life, with a regular salary that allows me to live a pretty active life, very good conditions that support my sometimes unpredictable illness, managers that support my career goals - both in my day job and outside, engaging work that I know is contributing to the greater good, and a wonderful group of colleagues, I am too comfortable, risk averse and scared to make the transition from a full time day job, working for the man, to doing more of what I love.

I can't imagine giving this day job career totally away, but if I am honest, I'd like to work so that I can work for the man and for myself comfortably. I want to write more away from this blog - and I have so many drafts but sometimes run out of energy to finish them. I spend so much time out of work working on my writing and speaking that I feel guilty when I take a break. I stay up late, I wake up early, I read and network and write down ideas. I never switch off. (An example is that it's not yet 7.00 am and I am writing this blog post, and when I am on the train, I shall draft some tweets to promote my blog in the day.) While doing what I love has never felt like work, I shouldn't feel bad when I take time out to watch the whole season of Girls in one sitting or go to a movie in the day.

Tell me, creative types, how do you do it? How do you put food on the table? If you have an agent, how do you make it work for you? Did you make the transition from the corporate world to working for yourself? How do you balance your day job with doing a lot more of your creative work - enabling yourself to make a decent income in both, and most importantly, without burning yourself out? And how do you keep up the motivation without regressing into full procrastination mode? I may seem productive but there's a danger that I could while away my days reading blogs in between naps.

-

On 9 April I'll be speaking at the Youth 4 Human Rights Forum at Federation Square in Melbourne. It's free and if you're interested in making a difference, you should come! The forum is aimed at helping young people focus on development issues and volunteering during National Youth Week (and beyond). The forum will start the conversion about global issues. I'll be talking about how my blogging has made a difference to connecting and helping people with chronic illness and visible difference.

PS: today a dream has come true - my writing has been published on Fairfax's Daily Life website - it's something I've aspired to for a long time. Read my piece here.

Mixed business: blogging, Chin Chin, Business Chic, new Bob Evans.

It's been a big week for me and my blog! Thank you all so much for your support - it really does mean a lot!

Thanks for all the lovely comments on my One Million milestone - I remember when my blog clicked over 10,000 hits, and then 100,000. Who would have thought One Million?! And the post I wrote about talking to people with visible differences has touched more than I could imagine. Australia's Disability Discrimination Minister Graeme Innes retweeted it, lovely comments have been left, and DeDe was inspired to write a blog post about her own experiences with her little boy Evan who has Ichthyosis. We met in New York last August - she's on the left, and her cousin Kara is between my Mum and I - and have become firm friends.

DeDe has done wonderful things in raising awareness about Ichthyosis, fundraising and blogging about her little boy's progress. You can read her blog post inspired by mine here. She writes about the invasion of privacy when people feel the need to ask her questions about or comment on Evan's skin. The reality of this is that these questions and comments are tiring, no matter whether we need to educate people about diversity, and I really hope DeDe and my stories help others understand and change their ways a little.

That post of mine has also been listed in Schmutzie's Five Star Friday Roundup. What an honour!

The Voices of 2013 nominees have been announced this week. So proud to be on the list, and also so happy that many of my friends are on it too. There is a huge diversity of bloggers - it's exciting. Tonight I am kicking back on the couch, listening to music and plan to check out some blogs I haven't read before.

Today I had lunch at Chin Chin with Fran, a friend I've known for more than 20 years. She's down in Melbourne for the Grand Prix - her son races in the V8 Supercars, and her husband and brother in law have a racing business. We met when her eldest son was in hospital with me when he was 13 and I was 10 - we were both very regular patients. Sadly, he passed away aged 18. I've got such fond memories of playing with him in the playroom, and then sitting with him and his family in his hospital room. It is bittersweet how tragic circumstances bring people together.

Fran and I both love food and we did not stop talking about food. We had son in law eggs with chilli jam, pork rolls (similar to Peking duck)...

...and kingfish wings with Asian herb salad and nuoc cham sauce. The fried fins made the fish look like it had wings. Cute!

Our food was wonderful - light, spicy and so fresh. I loved the salad, though spicy to the point of stinging my lips. It was great to catch up - we really only do it around the Grand Prix time or at Christmas.

Then I checked out Hosier Lane for street art - isn't this pretty?! I love how the Indian dancer is peeking at the gnome!

I headed home via Melbourne Central - which gave me a great chance to check out The Little Black Dress Project. My friend Cheryl from Business Chic is a fabulous street fashion blogger. We met three years ago when she took my picture for her blog. She has a Little Black Dress exhibition at Melbourne Central for Loreal Melbourne Fashion Week until the end of March.

From the LMFF website:

"Everyone has a Little Black Dress (LBD) but how many different ways can it be styled for work and play? BusinessChic.com.au streetstyle photographer and stylist, Cheryl Lin, works in Finance and explored 52 different ways to style a LBD for work. View the exhibition for FREE at Melbourne Central and purchase a copy of the LBD Project book as a useful reference for yourself or Mother’s Day! Visitors who wear their own LBD to the exhibition have the chance to win their own autographed copy and style session with Cheryl Lin."

She styled a little black dress in different ways once a week for a year. I love what she's done with accessories. She's gorgeous. The exhibition inspired me to work with my staple items more.

Cheryl has her own banner. I cried tears of pride when I saw this. So proud of her success! She works incredibly hard - like me, she has a day job and her blog is her other job.

If you're in Melbourne Central, do visit her exhibition and pick up her book. She's signed my copy and I can't wait to read it and get some ideas.

Finally, I picked up the new Bob Evans album Familiar Stranger yesterday - actually I downloaded it for my phone and computer, and bought the physical CD too, because there's nothing better than sighing over the CD booklet on first listen. As expected, the album is magic. It's more pop music than his previous solo albums, but I am loving this progression. The upbeat pop complements the often dark and deep lyrics. It's made me laugh, made me sad, made me think. He's an incredible writer. My current favourites are Wonderful You - an ode to his baby daughter, Go - an upbeat love song with a funny video - and In Another Time - it reminds me of Clare Bowditch's The One. In Another Time could be about a person returning to interrupt life when you've moved on, or it could be a hangover from a previous point in life that follows you around, and you just want to shake it. I highly recommend the album - tell me what you think! Kevin also wrote a great piece about musicians on Twitter - it made me think of fandom and the mystery shed when interacting with idols on social media.

That's it for me now, I am off to read. Tell me about your day. Tell me about the music that moves you.

 

One million hits and a blogging tip - Invest in those who invest in you.

My blog has just clicked over past one million hits! Yay!

It's been three years and three months since I started Tune into Radio Carly, and this project has been the one I've thrown my everything into. I've learnt you never work as hard as you do for yourself. This hard work has enabled me my dream of becoming a writer and speaker. Thank you to everyone who has visited, read, commented, shared, learnt something, and built a relationship with me - be it a friendship or professional network Thank you. While I still maintain that I blog for myself, it's been you who've buoyed me.

I particularly love it that through sharing my story, others feel empowered to share their stories. It's wonderful to get to know people this way, and also to help people become more confident in themselves.

I wrote about talking to people with visible difference on Tuesday. I've had an incredible response to this piece - so many comments, messages, shares via social media and most importantly, pride from my parents. Thank you for taking the time to think about the issue and continuing the conversation.

People ask me for blogging tips all the time. I have given a few over the years and no doubt I'll continue to give more. But this is one (issue) that has been on my mind for some time. It's a personal motto that I've tried to love by when blogging:

Invest in those who invest in you.

Too often I see bloggers (and writers in the mainstream media) push out a blog post only interact with their clique, overlooking those loyal readers who take the time to read and comment and share their posts. Emails and tweets of support receive no replies. And sadly, sometimes they don't even interact outside their circles on social media.

I see celebrities - writers, actors, musicians - interact so well with their fans on social media. And I see high profile bloggers who could learn from these celebrities.

Bloggers, take the time to engage - especially when your blog forms some or all of your income. Have some two way conversation with your readers on your blog and social media channels. Thank people for sharing your blog with their friends. Reply to the comments you receive (I try to, and see lots of bloggers who do this well). And acknowledge those who have been loyal supporters. When you have time, stop by and read their blogs and share them with your networks.

Take the time to meet with readers you haven't met before when you go to blogging events. They'll be chuffed you chatted with them, especially if you left your regular blogging circles.

If someone references you or mentions you in their blog and tells you about it, thank them.

I can't always get to all the blogs I want to, but I try my hardest.

While building a new and bigger readership is great, I also think it's important to treasure the community you already have. It's nice blogging manners.

Heathivate: The discussion about sex. Awkward.

I'm not one to talk about sex. I watch scenes on TV and films and I read about it, but it's not something that I comfortable talking about. I had to talk about sex on radio once and I came out of that interview feeling tense and ill-prepared. I don't write about it much, though I am sure I could if I put my mind to it. I have written about it specifically here and here, if you are interested. Oh the other day, I saw Pacific Magazines googled 'Carly Findlay Sex' twice and reached my blog. Slow news day? Sensationalist voyeurs.

There's something about sex and disability/chronic illness/visible difference. That it's assumed people with disabilities are not sexual beings. That we have never had sex, that we don't want sex, that no one would find us sexually attractive. There is the deeply personal question that strangers feel comfortable enough to ask: "can/how do you have sex?". There's also the idea that we may only want to or be destined to have sex with other disabled people. Maybe that's why I avoid the topic. Because none of those things apply to me, and I don't think they apply to the disabled people I know.

I don't talk about sex with my female friends like they do on Girls (how good is that show by the way?! I'm late to the Girls party, and finally watched the whole first season on the weekend. I love it - especially how open the characters are about sex. And I love the music. And Lena Dunham is so talented. I digress.). When it comes up in conversation, I tend not to look at the person I am talking to, and then hope the topic changes. The last person I properly discussed sex with was the last person I had sex with. And that discussion wasn't verbal, it was through text, so I didn't have to awkwardly avoid eye contact. And I have certainly not discussed sex with my Mum. Unless you count that awkward conversation back in 2003 when I have her a receipt with a petrol voucher on it and she read the receipt, noticing I had bought condoms. And that's been the extent of our discussions about sex.

So when sex therapist Doctor Gabrielle Morrissey spoke for a lengthy period at about the benefits of sex for our health, it was certainly an interesting experience. Ordinarily I would have quietly taken it all in, but my Mum was at the table with me. And I tweeted my way through the weird situation. Others did too - like Jessica Gottlieb.

Doctor Gabrielle certainly reinforced that a healthy, fulfilled sex life applies to everyone in the room. And when she asked us to write down our sexual fantasy on a piece of paper and put it in a box, I left that one right alone (though if I had to answer it, it'd probably be just to have sex regularly). Only, out of the corner of my eye, I caught my Mum participating in the activity.



I can't even.

Anyway, I popped out to the loo to avoid five minutes of going redder than usual. And then I tweeted a little, had a little fun. Doctor Gabrielle talked about red lingerie being the type that men most want a woman to wear. So I figure it's probably ok for me to go naked. Right?

 

She spoke at length about sex toys, and cleverly linked this into blogging.

And finally, the topic that I most related to: touch.

Recently I spoke about touch and skin hunger on ABC Radio National's Life Matters. I also wrote about skin hunger a few times. It's definitely something that I'd like to discuss more with Doctor Gabrielle Morrissey.

While awkward, the session was enjoyable. Doctor Gabrielle had the audience laughing, which is probably the next enjoyable activity after sex.

-

This is my second Healthivate post, more to come. View my first one here.

How do you feel discussing sex? Is it something you're comfortable with?

Tips for having a conversation with a person with a visible difference or disability.

(This picture was found on one of the Ichthyosis Facebook communities I belong to.)

 

 

I know I keep banging on about the comments I get about my appearance. The assumptions that I'm sunburnt or burnt. And the way that people just ask me about my appearance before they even say hello. Believe me, I'm not exaggerating, it does happen. And while some may believe these commenters are just curious or concerned, or get the impression that I am forever defensive, it's bloody tiring. (But it does make for good writing fodder.) How many of you are asked why you look the way you do before you're asked how you are?

 

The other night I went on the Footscray Rickshaw Run. I went on my own, and I have no problems making conversation or friends with strangers. There were about 20 people who attended. A couple were at a bench with me as we were served oysters. I said hello, mentioned how great the food tour will be.

The man's response to my food tour enthusiasm was "been in an accident, have you?". He couldn't even say hello or follow up the conversation I'd started. Rude. So the whole time I was standing there he was wondering why my face was red, and felt the need to ask.

I replied "no, I was born with a skin condition", and went back to eating my oysters. I thought that may settle the conversation. He didn't need to know more about me, he hadn't even taken the time to say hello!

But then! "What happens when you're in the sun?", he asked.

It's been particularly hot in Melbourne lately. A heat wave, you could say. It's been over 30 degrees for more than two weeks. And when it's sunny and hot, more people stare, assume I'm sunburnt and ask me questions about my face. So I thought I'd take the piss a little:

"More people assume I'm sunburnt and ask me questions about my red face", I quipped with a smile.

Crickets. He didn't find me funny.

"No, what happens when you're in the sun? Does it hurt more?".

Sigh. I answered quickly and then left the bench. I understand curiosity, but I didn't want to be the topic of his conversation for much longer. There was food to appreciate. I didn't want to be his lesson in diversity. I particularly hated that his curiosity was placed before the decent manners of a "hello, how are you?". I always marvel how having a visible difference has meant what's so personal to me has become publicly commentable.

I read an article about a mother who took a long time to get to love her son who was born with a severely disfigured face. The article states:

'Advocates say that honest stories like theirs help others to accept the disabled.

"Being surrounded or having contact with people with disabilities could have made the transition easier her," said Lawrence Carter-Long, spokesman for the National Council on Disability. "Part of the problem is [the disabled] are segregated, if not by institutions, then by attitudes. We don't see them in the work place or in school, so the fears and the worries are more pronounced. It's not an issue of malice, but of proximity."'

Lawrence Carter-Long is right. The disabled are segregated by institutions and attitudes. A fear remains, and intrusive curiousity seems acceptable.

I remember a few years ago just after I started this blog, a reader told me that she didn't know how to approach someone with a disability or a visible difference if she saw them in the street. She told me that if it wasn't for getting to know me through my blog, she wouldn't know how to react to me if she encountered me in person. "You'd talk to me like you would anyone else you meet", I suggested. I guess I'd make her nervous. She may not know where to look, and I may make her uncomfortable just by being someone she wasn't used to seeing. I was pretty disappointed and felt that I hadn't done my job in breaking down stigmas through writing here. Because my story wasn't enough, she was still afraid of disability, and how to react on encountering a disabled person, due to her lack of exposure.

And that's the thing. Disability and visible difference can be confronting because people are not used to seeing and experiencing relationships with disabled and visibly different people. They see visible difference and disability in the media and assume hero status, or a life to be pitied (like in those awful Facebook one like = one prayer memes), or worse - a villain status (think Harvey Dent's disfigurement in The Dark Knight). And too often, people without disabilities are playing characters with disabilities - 'spacking up' as Stella Young puts it. (Just writing that term has put the Fleetwood Mac song You Can Go Your Own Way in my head forever.) We just don't see enough real disabilities and visible differences (without scar makeup, I mean) in the media, so there's no fair representation of disability in society.

And that makes it hard for people to know how to act around people who are different, perhaps because normal interactions with the disabled and visible different are rarely depicted in the media. We are people too - getting out to do the shopping, going to work, spending time with friends, and even enjoying a rickshaw ride in Footscray.

So while some of you, your family and friends may be curious about people who have a visible difference or a disability, and there may be a certain level of discomfort when you encounter us - for the fear of the unknown - please don't forget your manners when you interact with us. Talk to us like you would talk to those 'normal' people.

1) If we say hello, say hello back.

Our initiation of a friendly conversation does not give you a right to launch into commenting on our appearance or asking why we look the way we do. Yes I will probably answer your questions, with limits, but I won't be impressed if "fuck you're sunburnt" is the first thing you say to me. We don't have to tell you the most personal things about our lives during our first encounter. Don't initiate conversation about our appearance before we do.

2) Don't assume intellectual disability.

Don't talk slower or raise your voice or worse, assume the person with a disability or visible difference cannot communicate. My friend Todd Winther, a PhD candidate in politics who also happens to have Cerebral Palsy, told me one of the things he dislikes about the first encounter with a stranger is being automatically treated like he has an intellectual disability. Todd has written about the way he has been treated by students when he's taught a university class. The assumptions about his intelligence are quite degrading.

3) Don't give us a platitude.

Don't say: "At least it's not...[insert any illness here]", "It's great to see you out and about", or "You're lucky you look normal". And certainly don't tell us you couldn't handle having our condition. Often when I tell people I am not sunburnt but was born with a severe skin condition, they say "oh, at least it's not sunburn, I was worried you got yourself so burnt". There's no comprehension (or apology for their initial question) that my condition has any impacts on my health other than the cosmetic appearance.

Shelley, one of my No Limits mates, has Dissociative Identity Disorder. She hates being told "But...you can't have a mental illness or a disability - you look normal!". "I'm still not sure what I'm supposed to look like??", she says.

Normal is just a cycle on the washing machine, right?

And similarly, don't assume chronic illness or disability only affects older people, and look surprised when you meet a young person living with a condition. Michelle says "With the cane most think I have a sport injury, "too young" is the usual. When I explain [I have Dysautonomia] they mostly look uncomfortable. People always seem shocked that you can get really ill so young, like there's a 'sick' age."

4) Don't be offended if we aren't as polite in answering your question about our disability or visible difference - especially WHEN WE HAVE ONLY JUST MET YOU!!

I am not going to be polite all the time. Us disabled people, we arent always saintly. We swear, we are rude and we get angry. Frankly, if you're the sixth person to tell me I'm sunburt today, I will be feeling pretty over it. And so if I'm rude back to you, it's probably because I'm gob smacked at the audacity of people feeling like they can comment on a stranger's appearance.

My American Twitter friend Carolyn, who also has Ichthyosis, said "People have no business asking. I'll tell 'em what this is but won't answer questions beyond that. I'm 51, so over worrying about offending anyone." And I am too.

Don't expect me to be your lesson in diversity.

5) If you have got to ask, do it politely. Teach your kids that too.


If you ask, preface the question with "I hope you don't mind me asking..." or "Tell me if I'm being rude". Certainly leave this question until after polite hellos are exchanged. And maybe thank us for taking the time to tell you about ourselves, don't just say "I thought you were [sunburnt is the word that I usually get]" and then walk off.

I was hanging out in Bondi with my friend Paul De Gelder last weekend (see below). He has a bionic arm and leg, as a result of a shark attack. The receptionist at the pub's front desk asked him whether he had a bionic arm, sometime after we got talking to her on our sign-in. She was polite, and he told her a little about it. No big deal. Paul and I got talking about the questions people ask us, and he told me of a woman who wouldn't even get up off her seat to ask him about his arm and leg - she just yelled questions from afar. Not polite.

 

I know that sometimes you're just dying to know what's wrong with us. And as much as I hate that expression 'what's wrong with us', sometimes I'm curious about peoples' appearance too. But I don't ask. There's a girl I see around the cafe I frequent, she has a facial disfigurement. I smile at her, she smiles at me. We probably experience similar reactions as we walk down the street. But it doesn't matter to me that I don't know what's 'wrong' with her. Because, there's nothing wrong, and she doesn't want to be bothered by my question about her appearance. She's just getting on with her day too.

 

Related reading: Our disabilities do not inconvenience you.

 

The Footscray Rickshaw Run at the Melbourne Food and Wine Festival.

Yesterday evening, thanks to the Melbourne Food and Wine Festival, I got to experience the Rickshaw Run, run (literally - the rickshaws were powered by human runners) by the Footscray Traders Association. I love Vietnamese food, and despite already being on a tour of Footscray last year, I wanted to try a different one, on wheels this time.

First stop was at D&K Seafoods where we were given three oysters each. I had six, because some people in our group were oyster averse. They were big and juicy.

And then we were off, two per rickshaw, tearing through the streets of Footscray. Lots of fun. I think the onlookers had as much fun as we did. I shared a rickshaw with a lovely woman called Leah.

Next stop was Little Saigon Market where we could look around and try some fruit. I had been here before on the Vietnam on a Plate tour last year. I stuck close to the fruit trolley, sampling mango, longan and cha chas, and peaches and nectarines with chilli salt. So sweet, so yummy!

We learnt to make pork and prawn rice paper rolls at Sen on our third stop.

Here's my first attempt - chubby and bursting at the seams. Sums up my tummy at the food and wine festival really!

There was a surprise at the fourth stop! A drumming band - really fantastic and looked as though they were drumming and doing martial arts at the same time, some barbecued beef wrapped in vine leaves (so spicy and tender), and a massage! I'd never had a massage until this one - and while it felt funny at first, I felt very good afterwards.

This was at our fifth stop - Hanoi pork from Sapa Hill. A watery, acidic sauce was poured over the pork to make it tender, and the pork was then served over noodles, Vietnamese mint and basil. Our waiter said this was his favourite dish, he eats it every day when he returns to Vietnam. It was good! I ate a piece of green chilli and it had so much heat in it though!

Our sixth stop was at Dong Que - we had spring rolls which we wrapped in lettuce and herbs. They were crunchy and juicy inside. Yum!

We had a race down the side street on the way back to our meeting place. Being on a rickshaw on Footscray is much more relaxing than the pedicab of New York. Though at first it felt jerky, it was fun to whizz through the streets, especially with the cool breeze that had finally come.

And here I am at our final stop before we said our goodbyes. What a fun evening! We are so lucky to experience a wealth of different cultures here in Melbourne.

I thank the Melbourne Food and Wine Festival for sending me along to this event.




 

Circa's One Night on Earth at Melbourne Food and Wine Festival.

On Thursday night I was a guest at Circa's One Night on Earth - an event in the Melbourne Food and Wine Festival. Circa is at the Prince of Wales in St Kilda - it was a balmy night which made the view of the bay even more beautiful. Three prestigious chefs came together to create the menu - Paul Wilson (Melbourne Pub Group), Ross Lusted (The Bridge Room) and Jake Nicolson (Circa) worked with sommelier Sally Humble for One Night on Earth.

Sally was on the microphone throughout the night - she was fabulous - she has a great gift for working with people and wine. Towards the end of the night, the three chefs came out to talk to the room about the food - I loved their passion. As they were leaving, I tapped Jake on the arm, telling him I work with his cousin's wife. Jake and I got chatting about the night, exchanged twitter handles, and Paul joined the conversation. It was interesting to hear how the food supply is affected by the climate - the fish Paul sources has been limited by both the recent fires and floods. Our conversation made me realise just how precious our produce is, and that our ecosystem is so precarious. It certainly reinforces the need to source whatever produce is locally available at the time, and puts the cost of fine dining into perspective. I enjoy learning about the food sourcing and cooking processes as much as I enjoy eating, and I am so thankful to Paul, Jake and Sally for taking the time to talk to me.

It was a night of indulgence - with seven courses - eight if you count the seaweed lavosh. There was beautiful food - such fresh produce, and every course was matched with imported organic wine. The premise of the night was to celebrate the earth - 100 people enjoying natural ingredients.

The Circa staff made me feel very welcome when I arrived. I was placed on the media table with two real journalists, which makers me feel equally important and amateur at the same time. It's a weird feeling of my writing not quite being mainstream media, and the whole perceptions of bloggers at the moment (my perception included).

The journalists were good company - we talked about journalism - the old and the new guard, paywalls, my uni lecturers, and how the great voices can get lost in the Internet noise. I also learnt a little about wine - one of the journalists, Jeni Port, specialises in wine journalism. I learnt to swirl the glass to release the aroma and flavour, and also that wine and food matching is designed to compliment or contrast a dish.


I was really pleased that our table was directly under a downlight, so it made it easier to take photos. Though my friends viewing my social media accounts were getting major food envy, with the beautiful Naomi PT playfully telling me to stop it on a number of occasions - deciding that she couldn't be my friend anymore after I posted the dessert photos. If it was any consolation to those suffering from food envy, I felt like a massive sloth after the eight courses, and lay heavily on my bed for some time.

So before my table company arrived, I was serve some seaweed lavosh with eggplant dip. The lavosh was deliciously kelpy - a little salty, a little fishy. It worked well with the rich eggplant dip. I liked that because the lavosh was vegetable based, rather than grain based, it didn't fill me up too much.

The first course was apple roasted bonito, heirloom vegetable and oyster tarama. The vegetables were lightly pickled, sweet and tangy. Bonito tasted like smoked trout - you can see it at the bottom of the picture. The oyster tarama was a fancy word for roe - and this is where taramasalata dip comes from. I loved the addition of the purple flower petal on the plate - such a pretty salad.

Next up was seafood - a mix sourced from Australian and New Zealand. Scallops, mussels, scampi, prawns and abalone. It was served on creamed corn, and topped with what I can only assume was sea cucumber - it had that lightly chewy texture. The scampi was my favourite - it came out of its shell whole, and was so sweet. The corn reminded me of delicious cornbread I had in America.

Here is a French wine that I drank before the duck course. It was Chateau Thivin ''Griottes de'en Brulhie", Cote de Brouilly, 2010. It was light and had fruity notes. I enjoyed it.

The duck course was my favourite savoury dish. Beautiful presentation and equally as beautiful tasting. On the plate, from left to right is red onion stuffed with walnuts and brioche, ash grilled Milawa duck, pressed fig, mini plums and blood plum vinegar. It was an amazing mix of tart and sweet and rich fatty tastes. The stuffed onion was really special - I want to make it for myself. The duck - rich, fatty and tender - was barbecued in aromatic wood chips - the chefs talked about the Robarta grill where they use different wood chips and infused oils to give food different smoky flavours. The translucent fig was delicate, and contrasted the tart plums. It was wonderful.

Our fourth course was wood roasted wagyu beef (thoroughbred from Japan), with porcini and farro risotto. The wagyu was meltingly tender - and the elements of farrow and lightly smoked pine mushrooms, combined with the sauce made it very casserole-like. It was rich and earthy, unctuous and I think was the meal that captured the essence of the Earth theme. The farro made a good alternative to aborio rice - it swelled into fat grains, and soaked up the flavour of the mushrooms. So good!

I was a bit full by then, but I was intrigued by the ingredients in this first dessert course. I powered on, for it was dairy heaven for me (for someone who doesn't drink milk, I certainly support the dairy industry well!). This one was a Heidi gruyere custard with pomegranate molasses, hazelnuts and nashi. The gruyere custard was rich and tangy, like yoghurt - cut by sweet nashi and the sherry-like wine served with this course. The texture of it was like heavy cream. I was interested to hear chef Paul Wilson speak about how they infused cream with gruyere cheese - so it got a hint of the cheese taste. After this course, I was approaching a food coma.

Our waiter told us the first dessert was great, but the next dessert was "OUT OF THIS WORLD!!!", gesturing his arms excitedly. He was right.

It was whole goats cheese wrapped in a brandy snap, scattered with native and wild berries, and dotted with salted caramel and berry sauce. It was beautiful, delicate and flavoursome - I liked the sourness of the goats cheese - it was almost like icecream, firm and frozen - with the berries (raspberries were stuffed with goats cheese). I tasted soft cardamom (amazing) and wild strawberries, which were like Willy Wonka lollies - superpowered strawberries!

If the taste wasn't amazing enough, I was besotted with the presentation - including the gold leaf berries. Gold leaf you guys!

The golden berries weren't the end of the meal - we were presented with petit fours. I couldn't capture the colours properly, no matter which instagram filter I used. From the back: white and milk chocolate choc tops filled with a mild mint ganache (held upright in a cup of lentils), sparkly biscuits with a peanut topping, and neopolitan marshmallow cakes - they look like little breasts actually. The marshmallows were my favourite. I had two.

Circa's One Night on Earth was really special. I came away from it feeling incredibly full, but I took pleasure in experiencing fine dining prepared by some passionate chefs, beautiful wine that I wouldn't ordinarily drink, and some new company. As my new chef friend Jake Nicolson tweeted to me, "we are very fortunate to have all these beautiful things at our doorstep."

I thank the Melbourne Food and Wine Festival for sending me along to this event.