The Ichthyosis Awareness Month blog project - launching 1 May 2013

I've been working on a very big project that I'm so proud of. All will be revealed here tomorrow and run throughout May.

 

 

Women are each other's worst critics. But not in Dove adland.

Recently the Dove Real Beauty sketches ad went viral. It features a forensic artist drawing a number of "real women" without seeing them - he draws by the women's description.

 

The women describe their perceived flaws rather than their best features.

"Tell me about your chin?" the artist asks one woman.

"It kind of protrudes a little when I smile", she says.

"Your jaw?" he asks another.

"My mother told me I have a big jaw" she replies.

After this first drawing session, the women are encouraged to spend time with each other (including men) and then the artist draws the women based on their peers' descriptions.

Their peers praise each other's appearances - citing thinness therefore highlighted cheekbones, a thin chin and cute blue eyes.

The women then see the two drawings side by side - their own description creating a less desirable, less beautiful face than their peer's description. The women are genuinely moved when they see the reveal - and I sense a twinge of guilt for being so hard on their own perception of appearance. We are our own worst critics.

 

But it is because we are often our own worst critics, it means we are the worst critics of other women. Maybe in Dove Real Beauty adland, 100% of women commend their peers' beauty. But in real life, including non Dove product adland, women criticise other women in the form of body shaming, and feel the need to conform to society's beauty ideals because ads, beauty products and magazines tell us how to look.

The women in the Dove ad were also pleased hearing their peers speak of them so positively. Perhaps they too were surprised, because it doesn't happen often. Seeing the women pleased by peer feedback heightens the notion of the need for women to be seen as beautiful by their peers.

A couple of weeks ago I was having a conversation with two women who I only regard as acquaintances. They were talking about dress styles they like. The conversation went onto seeing other women in the street. "I see some of the young girls around and feel sorry for them", one of my acquaintances said. "This girl, she had a nice little outfit on, short skirt, big shoes, great body. And then she turned around and I thought 'you would be so much more attractive if you just had a different face'". And of course I spoke up, pointing out that it's poor form to be thinking of this stranger's appearance many hours, even days, after encountering her, and then raising it in conversation. Things got awkward at that stage. And I thought, this is why women have a body image problem. Because it's women who discuss other women negatively.

I think the ad tries hard to promote positive body image. There are a range of women - ages and colours - though there is not huge diversity - I'd like to have seen a larger lady and a disabled lady there too. The ad's message still emphasises the importance of looking beautiful.

 

The heart of the message still focuses on outer beauty being integral to happiness and success. "It [beauty] couldn't be more critical to your happiness", participant Florence says.

Florence also says "I should be more grateful of my natural beauty. It impacts the choices we make in the friends that we make, the jobs we apply for, how we treat our children. It impacts everything." The only positive message I'm getting from that she has reevaluated how she may talk to her children about positive body image.

"Imagine a world where beauty is a source of confidence not anxiety" is the Real Beauty campaign's tag line. I imagine a world where a woman is confident as a whole person, not just because of their outer appearance.

I originally wrote this piece for Kiki and Tea. Go show them some love.

 

Tiny Superheroes - Empowering extraordinary kids one cape at a time.

It's easy to feel powerless when you have a chronic illness or disability. Much time is spent having medical treatments and appointments, various therapies and trying to overcome society's curiosity and sometimes cruelty. It's easy to forget that every day, you've got strength in your adversity. That you're a superhero. There's a charity in America that aims to remind children with chronic illnesses and disabilities that they have superhero qualities. The charity is called called Tiny Superheroes and they've been bringing smiles to children's faces since early 2013

I found out about Tiny Superheroes through the Ichthyosis community. Kids in capes kept on popping up on my social media feeds. And my heart melted at the photos. So beautiful! Here's Evan and Bruli playing the piano.

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And Evan flying. The cuteness.

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Robyn from Tiny Superheroes says that the initiative started after reading Blessed By Brenna. She sewed capes for her son and nephew, and her husband suggested that Brenna needs a cape too! Since then, she and the Tiny Superhero sewing team has sewn and donated over 100 capes to little children with illness and disabilities. Robyn says these children with illnesses and disabilities are "Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity."

From the Tiny Superheroes website:

"TinySuperheroes seeks to empower our little ones — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch."

Below is Lauren and Evan - both with Ichthyosis. Adorable!

I've been so moved by Robyn and her team - the way Tiny Superheroes honours these children is beautiful. Look! Clockwise from left to right: Anthony, Issac and Kenji. (Photos used with permission from Tiny Superheroes.)

I jokingly asked Robyn if I am tiny enough for a cape - at five foot one. And she told me that I absolutely need a cape! The cape arrived in the mail on Saturday :)

And I'm all about poking a bit of fun at myself, especially for a good cause!

It was perfect cape flapping weather! I went to infinity and beyond!

Robyn hasn't only been making and shipping capes to chronically ill and disabled children, she's also sent them to the young survivors of the Boston Marathon bombing.

These small acts of kindness by Tiny Superheroes are making children across the world feel ten feet tall.

You can nominate a Tiny Superhero here.


You can sponsor a cape for a Tiny Superhero here.

 

Staycation.

I've taken a week and a half of leave from my day job. I'm calling it a Staycation. I'm staying at home, writing, reading (I read this amazing piece on outing the appearance shamers called Pictures of people who mock me by Haley Morris-Cafiero, and I want to write something in response to it!), napping, dreaming, cooking, planning big things for my future and seeing local sights cafes. I'm also catching up with friends and doing a speech in Ballarat (which entails leaving home before 7.00 am!). And I must thank you all for the amazing engagement on my Whole of body health post - I did not expect such candid discussion and lovely advice! You'll be pleased to know I've booked to my GP in for a whole body check up on Tuesday.

Yesterday I had breakfast at the Candied Bakery in Spotswood - oh my lord. They certainly serve sometimes foods...

I had a Croque Madame and an apple pie shake (!!!). It's milk and icecream blended with a slice of apple pie. I know, right?! My friend Jo had an almond croissant that was amazing. The service was great and the customers kept on coming and coming. I also bought an olive sourdough loaf - the most amazing bread I've tasted.

It was a lovely morning spent indulging, catching up with a friend who I don't see enough of, and moseying though the now very hip(ster?) inner west. I found cute boutiques and a whole array of eateries I want to try out.

I returned home, read the paper, listened to some bogan rock (love!) and cleaned before the cleaner came.

Next up was a 2.30 pm brunch with Tash. She had pesto eggs and bacon, and I had corn fritters with bacon and a poached egg. We talked and talked - she seriously needs to go into life coaching! Tash gives good advice.

Tash helped me with a little blog project I have planned for May. May is Ichthyosis Awareness Month and I've decided to take part in my little space on the Internet. I don't want to reveal too much yet - the big reveal is 1 May - but I can share this gorgeous logo that Camille made for me. I can say that I am deeply moved by the content of this project and it's a privilege to share it with you throughout May.

That help Tash gave me? She filmed me for a video for the Ichthyosis Awareness Month blog project. A vlog if you may. We filmed on a park bench, after a few takes near some street art (noisy trams and a man said "BOO!") and in a laneway (over the fence from a barking dog who sooned calmed down but I rambled). I am planning to do a little Q&A in the project (another awesome idea from Tash!) - so if you have any questions about Ichthyosis and my experiences, send them through.

It was a fun day! Today I'm seeing my parents fresh off the boat (from Tasmania), catching up with a new friend for brunch and then seeing some blogger friends for dinner. Ahh it's a good life!

Have you had a staycation? What else should I see and do in Melbourne next week? Any tips for Ballarat? Do you clean before the cleaner too?

 

Whole of body health.

I have a few confessions to make:

I spend so much time focusing on the health of my skin that I don't seem to focus on my whole of body health. I spend a lot of time seeing dermatologists, eye and ear specialists and the infectious disease unit to ensure my skin condition is under control.

And yet I seem to neglect other parts of my health.

I'm not much good at going to the dentist - I think 2007 may be the last time that I went. It's honestly too expensive. Julia, we need more affordable dental healthcare in Australia. I eat a healthy balanced diet (though do indulge) and am mindful of eating whole foods, but don't exercise regularly. I've never had a pap smear. I don't check my breasts regularly. I remember to take an antihisthamine every day but forget my vitamin D supplement. And I haven't ever had my cholesterol or blood sugar checked. I tend not to take painkillers until I feel on death's door, and I am not sure how to manage my asthma properly. My skin is the organ I am most aware of and gets the most visibly, recognisably and painfully affected. Because of my rare condition, sometimes it's easier to just see a dermatologist than go to a GP who doesn't always understand my condition or focuses on it rather than the ailment I present for. Because sometimes it's too hard.


I was at a Heart Foundation bloggers event last week - a cooking class coordinated by Brand Meets Blog. Lots of lovely bloggers connected (Kim, Amanda, Toushka-Lee, Emma, Kerryn, Heather), we drank some wine, and we cooked some yummy healthy food with the help of a chef. The food was great!

We snacked on Lima bean dip and crudités...

And Sandra and I paired up to make a Moroccan mixed grain salad. Sandra has mad chopping skillz. Meanwhile I toasted some almonds.

Our salad! Quinoa, burghul, dried cranberries, celery, spring onions, mint leaves, parsley, olive oil, toasted almonds, preserved lemon, cumin, pepper, olive oil.

And an amazing Vietnamese chicken coleslaw. The best. Kerryn has uploaded the recipe here.

Mackerel. I wish my skin had this beautiful luminescence. It's so important for me to eat oily fish, and mackerel is a great source of omega 3 and good fats for my skin.

Our plated up meal.

And a beautiful poached pear in red wine with orange honey yoghurt.

While cooking with a wide range of fresh healthy produce to ensure a healthy diet wasn't anything new to me, it was really great to talk heart health with Dr Lyn Roberts AM, CEO of the Heart Foundation. She was so warm and knowledgeable. It was interesting to hear that women don't consider the risk of heart disease as much as men, and that if you think it's an emergency, call an ambulance - a false alarm is the best outcome. We learnt about the signs of a heart attack and it was reinforced that to make a healthy lifestyle change, it is best to start with small steps and build on these incrementally. This may mean small blocks of exercise leading to larger blocks, or reducing your intake of a bad food each week.


One of the things I raised was that because of my Ichthyosis, I tend to focus on this chronic illness rather than the health of my whole body. Dr Lyn Roberts emphasised that it's so important for people with chronic illnesses to make sure all aspects of your health is in check. It made me realise the importance of finding a great GP and ensuring they understand your chronic illness as well as them seeing that you undergo the regular checkups.

The Heart Foundation bloggers' class taught me about heart health, but it also made me think about how important it is to look after my whole body - not just my skin. And I am going to make those incremental changes very soon, starting with a check up at my GP, stat! And then I plan to do a bit of exercise each day. It can't be that hard. It will be worth it. I want to keep living this great life to the fullest!

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Tell me, are you good at maintaining your whole of body health, especially if you have a chronic illness? Have you had a lifestyle change for your health? Do pap smears hurt?

Disclaimer: I was invited to the Heart Foundation bloggers' class by Brand Meets Blog. I was not paid to write this post.

 

Dove Real Beauty Sketches Campaign - still highlighting that outer beauty is your most important trait.

 

I'm over at Kiki and Tea today discussing the Dove Real Beauty Sketches Campaign.

The heart of the message still focuses on outer beauty being integral to happiness and success. "It [beauty] couldn't be more critical to your happiness", participant Florence says. "I should be more grateful of my natural beauty. It impacts the choices we make in the friends that we make, the jobs we apply for, how we treat our children. It impacts everything", she says.

The Real Beauty ad tries hard, but the message still emphasises the importance of looking beautiful.

Read my piece here.

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You never know who your friends really are until they post a nasty Facebook rant

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Last week I wrote about using social media for positive change. On the same day, I had to hold back from commenting on a hateful Facebook rant against the New Zealand gay marriage bill. So I unfriended that friend instead. And their religion is supposed to be compassionate. They're a colleague. I am disappointed knowing their beliefs.

I feel that you never know who your friends really are until they post a nasty Facebook rant. And often friends surprise you with their social media activity. Just because they may be passionate (and compassionate) in one area of human or animal rights, doesn't mean they'll be tolerant across the board.

A friend who has congratulated me on my diversity work shared a photo of a Muslim woman on a train holding a bag with a store logo "bang". Someone else I know who champions positive body image posted a mocking picture of an overweight woman in a fast food queue (picture below). A religious, compassionate friend shared someone else's racist rant about our soldiers fighting for Australians - stating that anyone who doesn't agree with the display of the Australian flag should go back to their country. And most disappointingly, two friends who are all about acceptance and inclusion of disability commented on one of those disgraceful 'tag someone you know' photos - of a vulnerable, visibly different looking person - and I can bet that in most cases, their pictures are used in those memes without their permission (see an example of this below). Again - tolerance and passion in one area doesn't mean tolerance and acceptance across the board. Or people just do not think.

(Apologies if these pictures offend you - I am using them to exemplify the pictures and rants I have seen on my social media feed.)

I have recently gone on an unfollowing spree on Twitter. When the tweeters often did well to peddle their own causes and agendas, they were also ranting about something else. While disagreement and differing opinions doesn't equal bullying, their values and online behaviour were qualities that I don't want in a friend. Boring. Next! I feel lighter without the constant anger and passive aggressiveness of some of these people. As my Twitter friend Kirsty tweeted last night:

She also wrote this piece of brilliance.

 

I have also private messaged a couple of people about their Facebook activity, questioning the homophobic and disablist pictures they're sharing. And after my messages, they told me they just didn't realise they were promoting homophobia and disabilism, and removed their posts. Perhaps education rather than unfriending is the key, though in the case of the anti NZ gay marriage rant, there would be no reasoning.

I am not sure if people are aware of their actions on social media. And I also think people forget that their social media activity reflects on them as an employee, despite using it in their private time. Reactions to issues and social media posts are so immediate, and it's a quick, effective way to voice an opinion after an event that may have pissed you off. People think their friends don't see when they 'like' a pornographic image. There is no self censorship, and often the ranty narrowminded statuses are seen as heroic, receiving a following and trail of echoing comments from equally as bigoted friends. Anyone who dares to disagree is called out, and encouraged to unfriend. Despite how 'private' a Facebook or Twitter profile is, someone is always looking, and judging. And while free speech is allowed, hate speech seems to spread so quickly. It's easy to forget that your angry/sexist/homophobic/racist/disablist rant can define your personal values. And this can make 'real life' interactions very difficult. The 'hide from newsfeed' option on Facebook comes in handy.

Chloe Angyal writes on Daily Life:

"As we spend more and more of our time online, and reveal more and more of ourselves through the sharing nature of social media, perhaps the unwritten but closely observed rules of Facebook interaction will evolve: In addition to starting fights, we should be able to resolve them, too. Digital pecan pie, so to speak, at this weird online Christmas lunch table. For now – until Facebook offers some new mediation tool – we're still stuck negotiating the awkward, uncharted middle ground between the digital and the real. We're stuck inviting people who "liked" Sexism to our IRL (in real life) events."

While I am opinionated on social media, I am always mindful of who may be reading, and how my opinions may be perceived. And I am always conscious that I interact with so many of my social media friends in person, and would hate them to be surprised about some of my beliefs they'd read on Facebook. What I write online is what I believe offline. And I'd like to think I'm quite open minded and inclusive of diversity.

I am so so proud of New Zealand's progressiveness and I hope Australia follows suit soon. Equal love for all.

 

How do you deal with questionable, misinformed discriminatory rants on social media?

If you're looking for me on social media, I use Facebook, Twitter and Instagram.

 

"Human to human communication creates change": Blogging for social good at the AYAD Human Rights Forum.

On Tuesday 9 April, I was asked to speak at the AYAD human rights forum at Federation Square Melbourne as a part of National Youth Week. An AusAID initiative, AYAD is a program for young people from 18-30 to volunteer in developing countries. The forum was to inspire young people to use ther skills and passions to create global change. The audience comprised more than 230 passionate young people committed to making a difference to human rights. My fellow speakers - Jessie Taylor, Julie McKay, Brendan Rigby and Dan Ryan - were some of the smartest, influential and compassionate people I've met (and oh so tall).

(Jessie, Julie, Dan, Brendan, Me)

 

The speakers really were exceptional. Jessie Taylor is my age - she's a barrister, film maker, refugee advocate, speaker and foster mum to a 17 year old refugee. Brendan Rigby is an education specialist, volunteering in developing nations. Our MC, Dan Ryan was the 2012 UN Youth Ambassador, going on a national listening tour before presenting these issues he heard to the United Nations General Assembly in October 2012. Can you believe he's only 25?! And Julie McKay, age 29, is the UN Women Executive Director and 2013 ACT Young Australian of the Year. While I don't want to downplay my own achievements, before I met the four speakers and had only read their bios, I felt rather ill-equipped to speak about human rights. What do I have to do with human rights? Because I'm just a blogger. And blogging is a little narcisstic, right? When the others asked what I was speaking about, I honestly said "I know very little."

My silly nervousness soon dissipated when I spent some time laughing with my new friends, and listening to their stories. And I thought about how blogging is making a difference - both reaching out to communities and giving voice to those who may not previously have been heard. And while I think blogging is becoming very commercialised and brand oriented and less about the writing, and bloggers are criticised for being superficial, self indulgent and entitled, there are still so many bloggers who are brave enough to share their stories to make a genuine difference to others. And Julie Taylor said in her speech that so many of us are "human rights defenders" just by helping others. So I guess I am too, doing my small bit.

Julie spoke about her time with UN Women, mentioning two women she'd met through her work who made choices to better their lives and also lives of others on a global scale. She said "Never doubt what you can contribute and what you can achieve." She also spoke of the human lottery - how we can't help what situation we are born into.

Brendan Rigby talked a lot about how education has made such a difference to the life of one girl in Ghana - and through her determination and her teachers' beliefs in her, she accomplished more than was ever expected.

Jessie Taylor told the story of how her foster son came to be an asylum seeker. It was a harrowing tale (you can hear it here) and she reinforced that many of the asylum seekers have been through so much brutality that they'll do anything to escape to have a better life. Jessie said how important it is to inform people of the facts, especially around human rights issues that are feared, to help remove their prejudice. She ended her speech saying "Don't ever let anyone put fear into you. If you want to create change, do it and do it now."

After our speeches, we spoke on a panel on stage. We all agreed it is easier to make a difference in a little patch of the world using your own skills. Julie McKay said "offer whatever you can when volunteering" - while she doesn't feel like she could make a difference on the ground in third world countries, she is good at getting funding from organisations to help the work on the ground. We spoke about fear of the unknown and how once an issue is humanised, fear is allayed a little (Jessie mentioned her Mum not understanding the asylum seekers, but her mind was changed when she met Jessie's foster son for the first time). We talked about speaking up when you hear misinformation that creates fear. I spoke a little about "othering" and deviated a little from blogging and disability, citing some of the attitudes toward my Mum - "but you're not black, you're different to those other blacks". And I also answered a question about encountering negativity online, saying that sometimes I just have to step back from an issue because no amount of reasoning and education can make a positive difference.

It was fantastic to be a part of this forum - I made some new friends, learnt a lot about global issues and feel motivated to continue making positive change.

That quote in this post's title is from Jessie Taylor. "Human to human communication about humans creates change". And this is so true about blogging. We share stories so others others can learn, empathise and share theirs.

AYAD Human Rights Forum speech

I'm sure most of you here are social media users. You'll be nodding at my frustration when I tell you how tired I am of seeing disablist Facebook memes, homophobic and racist rants, and sexist photos on my social media feed. Just the other night, I got caught up ranting about the Logies and whether 'best new talent' is a good way to describe Joel Madden. There is so much slacktivism - like this picture if you care about this sick baby, turn your profile picture pink for breast cancer. The Internet can be a dangerous tool to spread misinformation, accusations and cyber bullying. And it’s easy to get caught up on social media, ranting about things that don’t really matter, like I did on Logies night. But the internet can foster communities, inform and change attitudes.

The rapid speed at which information is created and shared on the internet, and the reach of social media, means the internet is great vehicle for online activism and creating a positive change.

Digital Marketing Ramblings provides the following statistics for social media use in April 2013:

• 106 Billion monthly Facebook users, with an average of 159 friends.
• 500 Million total Twitter users
• 343 Million Google Plus users
• 170 Million total Tumblr users
• 1 Billion total YouTube uses with 4 Billion visits per day.

Digital Buzz Daily says that in one day, 2 Million blog posts are written, 294 Billion emails are sent, and more iPhones are sold than babies born.

It was estimated in 2011, there were more than 156 Million blogs worldwide, this figure has certainly increased.

Blogging is very cheap. It can be done from anywhere in the world, and from computers, tablets and mobile phones.

I believe blogging gives a voice to people who may not have previously had a voice, and may lead to mainstream media publication.

Blogging can offer support to those who may not feel supported in their real life. People with disabilities or in remote areas can connect with others across the world to form a sense of community and shared understanding. It creates strong friendships - one of my friends I met through blogging is here tonight.

My story

I am a blogger. And those two points I just mentioned apply to my experience. I have been blogging on and off since 2001, though been blogging on my current blog Tune Into Radio Carly since December 2009. It is this blog that has made the most difference to my audience and I.

I write about food, live music and Melbourne culture, social commentary and love, as well as working with causes such as Sam Johnson's Love Your Sister, Donate Life and Sunsmart.

I also write about what it's like to have a visibly different appearance - because I have a lifelong genetic skin condition called Ichthyosis. It means scaly red skin. I describe the medical and social challenges and triumphs of living with this condition. I use honesty and humour, and always try to put my best face forward online, because in the back of my mind, there's still fear that my image will be misused.

I show people that it's ok to look different. I encourage those who look different to feel proud, and those who judge difference to raise their expectations of people like me.

In 2010 I wrote a blog post which was later published on Victorian Government disability website Divine - it was about how blogging gives me the chance to tell my story without the sensationalism that the mainstream media gives to those with disabilities, chronic illnesses and visible differences. I won a Yooralla Media Award for best online commentary, and maintain the belief that blogging puts me in control of my own story today.

My audience varies. Some of my readers visit for the food pictures, others visit to read a band review. There are many readers who write to me telling me they have Ichthyosis and did not realise there was anyone else out there until they found my blog. Others are parents of children with the condition, and my blog (and successes in life) assures them that things will be ok for their children. And then there are people that write to me telling me I've taught them or their children about diversity, and even changed their mindsets. Just last week a teacher friend of mine wrote telling me she has used some of my blog posts in her grade 9 class. The posts she used were where I've explained situations of bullying and harassment because of my appearance. She told me that the class got a good perspective about what it's like to look different and that the class bully thought about his previous behaviour and asked for a print out of my posts to read at home.

Blogging has led to many opportunities - which of course in the online age, are globally reaching. This little media career of mine was something I'd dreamed of then studied for, but I'd never expected because of my appearance. I was a finalist in Sydney Writers Centre's Best Australian Blogs awards in 2011 and 2012 and also received a grant from the Layne Beachley Aim for the Stars Foundation to further my writing and speaking. I have been published on mainstream media websites such as Fairfax's Daily Life, Mamamia, News Limited's The Punch, ABC's Ramp Up and in Frankie Magazine. I have spoken on ABC Radio's Life Matters program about visible difference and the concept of Skin Hunger, on Triple J's Hack about love and disability as well as employment and disability, and am a regular cast member on Channel 31's No Limits. My Day Job is a communicator and events planner in the Australian Public Service. I've spoken to a range of public servants about being a responsible public servant and social media user. I've also been able to educate the genetics and dermatology teams at the Royal Melbourne Hospital (many are International doctors) about the social aspects of Ichythosis as well as how blogging has led to media career. And last year, a university program in England - the Centre for Appearance Research at the University of Western England - found my blog and asked me to review an online program for them which helped young people with visible differences develop confidence and coping strategies, and then invited me to speak at their academic conference called Appearance Matters. I went to England in June last year, speaking in front of around 50 academics and a few patients.

Other bloggers making a difference

Last year a number of Australian bloggers including Eden Riley were flown to Niger and then India by World Vision - and they reported on the living, education and employment conditions of people living in these third world countries. Their stories, videos and photos encouraged many of their readers to sponsor children or donate to World Vision. World Vision told me that over 50 sponsorships have been directly attributed to four blogging ambassadors who blogged from India last November.

Though not a blog, there is a Facebook page called This is what disability looks like. It features photos of disabled people doing every day things. It depicts real people from around the world living with disability.

My friend Gloria Malone has a blog called Teen Mom NYC - she highlights the social and financial issues teenage mothers experience. She is a 22 year old university student who gave birth to a child when she was 15. While Gloria is based in New York, her blog reaches out to andngives voices to teenage parents worldwide. She was recently published in the New York Times, and her article was shared across the world.

And I have friends in the USA who have created a blog called Confetti Skin – all about different forms and experiences of the condition I have - Ichthyosis. They cover personal, local and international issues about Ichthyosis, including most recently, their opinion on the media coverage of a Malawan baby born with the condition.

How you can make a difference

Start a blog about issues you're passionate about! It's free and the interfaces are intuitive. You can be a citizen journalist.

If you're on an aid trip, write your experiences and broadcast them to the world. Give other people a chance to tell their stories on your blog – interview them by video, share their art, music and stories.

Share that blog! Share it on your social media networks. Share your blog with your friends and organisations – the partner organisations here today - that can make a difference.

Read other blogs and comment on them, keeping the conversation going.

I challenge you to leave here and use the internet productively and responsibly. Think about the reach of social media. You never know who may be reading and how you may be helping someone.

You can use your skills, your path and your voice to make a difference through blogging and online activism. Blogging is often a powerful tool for the most unlikely people.

Thanks for having me at the AYAD human rights forum, and a special thanks to Jess from Austraining International for finding me and asking me to speak, and the great communications leading up to the forum. Also, in lieu of payment, a donation was made to Love Your Sister. View more photos from the forum here.

I'd love to keep the conversation going. Tell me of a blog you know that contributes to improving human rights? I'll share them on my social network platforms.

 

 

This skin, it's hungry.

you cling to me like a koala on my back,

warm and close,

arms encircling my paper bark trunk.

our limbs play, like intertwining branches,

tickling infinity,

delivering each other stars.

we doze, full of eucalyptus love,

concave like gum leaves,

i will store this memory

in deserted knots for the winter.

I wrote that poem many years ago, towards the end of a relationship. It was falling apart, but still, we clung together, him like a koala on my back - warm, close and sleepy. I knew we were coming to an end, and told myself those memories would be there when he wasn't. In the cold winter.

Storing the memory of touch for the winter. Like jars of bottled summer fruits, full of sunshine and bursts of flavour, mouthfuls transporting you back to the warm months. Only, now, I think I've run out. My bear suit is thinning. My jars of peaches are low in stock. And the tree's knots are almost deserted, ready to be nests for avian couplings.

The touch I encounter regularly is solo - a necessary oil-slick, and sometimes gloved and clinical, punctuated by medical terms such as erythrodermic and cellulitis.

I've shaken a lot of hands lately. Networking. But that's not satiating my skin hunger. I'm yearning for proper touch. And the irony of it all is I am surrounded by more people than ever, feeling loved and wanted, yet skin hunger is quite a lonely existence. It's empty and prickly and I wrap myself up in my blanket tighter each night.

A toddler on the tram clung to her bear, and I wondered when it stopped being ok for adults to carry around a toy, just to cling to something, to hold something close.

Touch is nurturing, regenerative. It's like the human equivalent of photosynthesis, allowing us to flourish. Sometimes standing out can black out the light, rendering a sense of the untouchable, consequently creating sensory deprivation. Without touch it's hard to flourish.

I try so hard to remember. It's two weeks or so since I've hugged someone hard. He gives the best bear hugs, and is generous with them too. It's getting harder when the space between touch grows longer. I imagine this how the princess felt, trying to feel the pea below the stack of mattresses. You can't bring out touch to evoke nostalgia. It's not like a smell or a meal to bring back a memory. Even your song isn't the same as the hug you gave me when you left. Nothing ever compensates.

With everyone I meet, I am bursting with the expectation of tactile possibilities. I hope and I hope, hanging awkwardly, unsure if I should initiate the first touch. This skin, it's hungry.

 

Gotye parody video wins FilmLife festival for organ donation

A parody of Gotye’s 2011 hit Somebody I Used To Know has won the 2013 FilmLife Awards - an annual short film festival that encourages young people to “discover, decide and discuss” organ and tissue donation.

The winning film Somebody That I'll Never Know produced by Brooke Huuskes was voted Best Film in a field of 18 films at a ceremony held in Sydney. Comprising high production values and a remarkable resemblance to the original, the short film has even received the blessing of Wally De Backer (AKA Gotye) himself.

Brooke, a 28-year-old Monash University PhD student remade the music video to encourage others to discuss their organ and tissue donation wishes with their loved ones. Brooke herself is an organ recipient, having received a kidney from her father– a living donor – in 2010. This experience inspired her to enter FilmLife, - an annual film making competition that encourages young filmmakers to use their creativity to change lives by making compelling short films on the tricky topic.

Brooke’s first-hand knowledge of the importance of organ donation and the overwhelming gratitude she feels towards her father inspired her to make the film. She says “whenever I think of what my Dad did for me I get teary-eyed”.

Brooke’s film is particularly timely; coming at the climax of a week where the Organ and Tissue Authority announced that official organ donor rates are at record levels in the first quarter of 2013.

 

BBQ, Beer and a Bloody Brilliant Idea was another of my favourites.


 

 

And these were too.

I think, as well as getting young budding filmmakers involved in the film making process, the content and distributions of films will get young audiences talking about organ donations.

You can see all the videos here. It was a great experience watching all the videos - some of the film makers were at the Footscray Community Arts Centre screening in Melbourne and some others, including Brooke, were in Sydney. We spent the night watching the videos and crossing between the cities for announcements. We had a very excited audience, definitely team Melbourne!

I was a judge in the FilmLife blogging competition - I can proudly announce that Peta Murray from The Groundswell Project, Matt Ross from Dad Down Under and I chose Alysha Hermann's One Life as the winner.


In deciding on a winner we were asked to consider whether a post inspired conversation about organ and tissue donation, whether it showed creativity, whether it was well written, whether it was presented creatively and whether it had any “x-factor” in capturing and using the theme in an unexpected way.

Alysha’s post scored high points against all criteria.

The all-important question mark in her title set the tone for a piece that engages directly with the reader in a complex and challenging conversation.

Alysha quickly draws us in to her musings about some of the mysteries that attend matters of life and death. Her use of repeated questioning holds the reader close, challenging us, asking us to delve into our own hearts and minds, and to travel in our imaginations to an uncomfortable place.

The piece adopted a poetic voice, mixed with a more conventional descriptive approach that demonstrated versatility and skill from the writer. Over three cleverly structured “acts”, each in a slightly different style, Alysha set out her case. We found her post beautifully written, and attractive on the page. Its compelling imagery and energy propelled us forward, and kept us involved to the end.

“Lives held suspended along the length of a siren’s light…”

Just one of many powerful moments, delivering us to a final message both clear and powerful, yet placing the onus very much upon the reader to make a choice.

Congratulations to all the entrants for their contributions. All of your posts asked questions of us, and all of them taught us something new or helped us think afresh about the topic of organ donation.

A reason I was a judge at the FilmLife festival was because my friend Camille received the call - she received a double lung transplant - and so she couldn't be a judge. It was her first night out - here we are with FilmLife judge Dr Sally Cockburn. Camille's presence certainly made FilmLife more poignant for me. She's living proof that organ donation saves lives, and we need to get more people talking and registering for organ donation.

For more information about the FilmLife Project, click here.

For information about organ donation, visit donatelife.gov.au

 

You. Who are you?

 

You are that man on the City Circle tram, my first reader that 'came out' in person, holding my arm so I didn't fall as the tram jerked around the corner, telling me you've been reading since you saw me on Business Chic.

You are the stranger on Facebook who told me you relate to my stories of Ichthyosis because you also have the condition, and had not spoken about it much until my article.

You are the stylish corporate who strutted across the tram tracks, telling me you love my blog as we passed each other in the peak hour crowd.

You are the colleague in the lift who made my other colleagues realise there's more to me than my day job.

You are the musician's manager, encouraging his support act to read my work.

You are the diner in the restaurant, telling me you'd hope you'd meet me there after seeing my pictures from the next room on Instagram.

You are the stranger my parents gave my card to - a Miss Australia Winner - emailing me out of the blue.

You are the senior manager who told me you've been reading my blog over the long weekend, and I should look to be published more widely.

You are the boy who teased me at school, reading and then apologising, and who would later become a lover.

You are one of my favourite singers, sharing my work as I've told the world about your perfect voice and lyrics.

You are the shopper in Borough Market who excitedly called my name with that broad Australian accent, making me forget I was in London for a minute.

You got to know me through my words, and now you're one of my very best friends. There's many of you.

You are my blog reader.

Thank you for doing and saying so.

♡


I was at an event the other night and someone I had just met asked me what I do. I'm a writer, I told them. "That's right", they said, "I've read your writing before". And the night continued with similar conversations. A fellow public servant told me she has used my writing as a resource in her department's diversity policy (a big compliment!). A young woman asked me for advice on becoming confident in despite of her chronic illness. And I don't want to seem arrogant, but I want to share this with you:

I met a teenager studying year 12. She told me she was "a big fan" of me after reading my article in Frankie. The level of excitement she showed upon meeting me was about the same as when I've met Darren Hayes. She was extremely excited! So cute! She told me she wanted to be a journalist when she finishes school. I encouraged her to start a blog.

Though these were brief meetings, I took some time to ask these people about themselves. I wanted to know about them. What brought them to the event? What are they hoping to do in their lives? Will they let me know about their journeys after the event?

I was saying, there's a strange power imbalance in being a blogger. People know a lot about me because of my online presence, and when I meet them, I know nothing about them. Often the meetings are so fleeting. They excitedly tell me they read my blog, I thank them, and most of the time they rush off when I'd really love to stop and chat. I want to get to know my readers.

I was also saying on twitter that I will never cease allowing anonymous commenters, because so often they leave the most golden, powerful comments. Writing a blog and enabling anonymous commenters seems to give people permission to share their personal stories. I love that. Thank you.

Blogging is like a one-way window. You see me, you know me, but I don't often know you. And I want to know who you are.

So tell me:

Who are you? What brings you to my blog? What are your dreams? Tell me a secret. How are you going to change the world?

Be anonymous or share your name. Tell me about you.

 

Blogging tips: So you wanna start a blog?!

(source)

I'm impressed by a man who is thinking about starting a blog at 2.26 am on a Saturday night, and writes to me asking for tips on how to blog! He's never had a blog before and is keen to get started, having written a number of potential draft posts before sending me that message. Clearly the thought of starting a blog in the middle of the night means my friend should start one, yeah? HELL YEAH!

Blogs are a great way of telling your story - they're immediate and easily updatable. And you can start one really quickly, should the thought stop you from sleeping at night.

So here are my tips for starting a blog.

Choose your platform.

There are a range of blogging platforms available - many are free. You can try Blogger, Wordpress, Tumblr, SquareSpace, TypePad, Drupal, Moveable Type, Weebly, MySpace, Bravenet or Live Journal, or do your own search for other options.

You can sign up for a blog account easily using your email address and adding a few details about yourself. You can blog with your name or semi-anonymously with a pseudonym (more about that in a future blogging tips post).

Blogging platforms are relatively simple to use - they're intuitive and you don't need to know HTML coding to create a blog and its posts. I have a basic knowledge of HTML from my eCommerce degree and do use it a little for links and tables, but only very occasionally.

I use Blogger (Blogspot) and find this really easy to use - I like the templates and commenting system (except the spam!) and it's easy to create posts and update them - see my pictorial instructions below. Blogger allows users to have a blog homepage plus tabs featuring other information such as 'About me', and 'Contact' pages, as well as side bars for links to other blogs (known as your blog roll) plugins such as Facebook page links and stat counters, and your blog post archives.

Before you add content to your blog (known as blog posts) make sure you've got your template ready. Think of a name and URL (web address) for your blog - make it something you want for the long haul. Add a picture in the header. Create your sidebar. Make sure the text will be readable - consider using Arial or Verdana - and use black (or dark) text on a light background. Put a disclaimer on it if necessary. Link to the blogs and websites you like. And you're set!

(You can also integrate a blog onto an existing website (or link to it from your existing site). I haven't done this before but you can pop over to Infinite 42 for some instructions.)

Blogger tutorial

1. Visit www.blogger.com and select 'Create blog'. This is when you create the blog's name and URL. I do believe you need a Google account but I think you can link your existing email address to the account (which is what I do) or set up a Gmail account. Follow the steps as you navigate each page.

2. Navigate your dashboard. From here you can create new posts, change the template, view and moderate comments, change privacy settings, and layout and view basic statistics.

3. Choose a template. Here you can choose the colours and background picture, fonts and layout.

4. Add sidebar features (head back to the dashboard to do this). You can add plugins and a blog roll as I mentioned above. You can also move elements around. It's best to do this on the computer rather than a tablet or phone.

5. Write a post! Click on the orange and white button or the pen button to write a new post. You can add pictures and hyperlinks, format text, embed video, preview on the web and schedule from this screen. You can also edit from the dashboard later.

Click publish! Aaand you're a blogger!

Writing tools.

I often write straight to Blogger, but this is probably not a good idea because I could lose my work (there is a backup function) or there's a risk of poor editing (but you can go back to edit posts after they're published). For new bloggers, I recommend writing your posts in a word program, editing for spelling, grammar and spacing in that program, and then copying and pasting to your blogging platform. You will need to upload your pictures through the blogging platform rather than cutting and pasting to with the text (and you may also have to manually edit the hyperlinks within your blogging platform too).

I also make notes on my iPad or iPhone and email these to myself so I can cut and paste straight to Blogsy on the iPad or Blogger on the computer.

Very rarely do I use a notepad and pen now!


Create that content!

Find a topic you're passionate about and want to write about for a long time and stick with it. Your blog doesn't have to be niched, but it does help if you have a focus (for the reader and for your own goals). Maybe you want to start a blog to develop your writing or share your knowledge and experience. You can still write about a range of topics on your blog, but regularly bring the focus of your blog back to your focus topic. For example, while I write about lots of facets of my life (food, Melbourne, love, social commentary, blogging) I always ensure I blog regularly about Ichthyosis, visible difference and chronic illness. That's my focus.

Write what you're comfortable with. You can reveal as much or as little as you like. Write from the heart - what I like about blogging is that it can show real emotion and passion, and readers really engage with this authenticity.

You can blog with words or pictures or even create videos or soundbites and upload them to your blog. (Whatever you do, don't have automatically loading music playing when your blog opens!).

Cite your sources if you've used pictures or quotes from elsewhere.

Ask permission if you are going to write about someone in your life. Be careful blogging about your work, colleagues or workplace (I'd avoid this completely unless your blog is your own work!).

Allow comments and respond to them. Don't use Captcha on your comments - while it does filter out some spam, it makes it hard for the real commenters to leave a comment.

Write like someone's watching - create quailty content and know that you will be read by someone! Your blog will expand your profile if you let it. You may not have 100 subscribers in the first week, it takes time.

Just write! And write regularly.

Many new bloggers start with excitement. "Yes! I'll blog three times a week! Yes I'll connect with other bloggers! Yes it'll be easy.", they exclaim with gusto. But then they stop, and their blog is frozen in time, with their grand announcement to start blogging still on page one, three months ago.


And so many people say they want to start but put it off. They often make all sorts of excuses how they need to find a topic and they're too busy. Just sit down and write. You'll be pleasantly surprised.


When you first start out blogging, aim to write once or twice a week. Write regularly so your readers will know when to expect posts. Set aside some time to write - maybe 15 minutes a day or an hour on the weekend.


I used to try to publish a blog post every day, but this got tiring. And I ran out of content. So now I aim for three to four times a week, plus fit in writing for other publications too. I almost always write blog posts at night or in the weekends, and and schedule them for 7 am in the morning. Sometimes I'll write a lot of posts on a weekend, over a bottle of wine, and the first post will come out fairly sensible and by the fourth post I'm much more creative. I don't know the rules about drinking and blogging.


Having said all of that, write when you feel like it. If you just blog for regularity or because you think you owe it to your readers, but feel like you're forcing the words, have a break. Blog when you have something to say.

Find some apps.

There are lots of apps to allow blogging on the run. I blogged my entire overseas trip on my iPad, albeit with no smartphone coverage and an often temperamental wifi connection.

I use Apple products - so if you use Apple too and like the sounds of the apps I've mentioned, search for them in iTunes. If you are not an Apple user, search your equivalent app store for blogging apps.

I use Blogsy for blogging on the iPad (and you can get an iPhone version) - it cost me around $5. I like that it integrates other apps such as Facebook, Instagram and Sarari for easy access while blogging. Blogsy works with all of the blogging platforms I mentioned above. I can't recommend it highly enough!

There is a Blogger app for the iPhone (and equivalent for some of the other platforms including Wordpress and Tumblr) but I don't use it to write and publish new blog posts as there are only basic functions on it, and you need to use HTML for links and formatting text. I do use it for editing a published post on the run.

I also use Instagram to upload pictures - it's a community of its own, and it's often a picture that inspires my words, Facebook and Twitter for the iPhone and iPad - to promote my blog, and Photoshop Express and iPhoto on the iPad and MacBook to edit photos.

Apps such as Hootsuite and Buffer allow you to schedule tweets and Facebook posts, and in some cases, enable you to use multiple social media platforms from one interface. Visit Roadside Multimedia for more information about these apps.

Promote your blog!


Promote your blog on your social media platforms. Twitter, Facebook, Google Plus, Instagram and Pintrest are good to start with. (Melissa from SugerCoatit has a great post about sharing your own work on Pintrest.)


Set up a Facebook page for your blog (a page as opposed to your personal profile - this will enable people who aren't your Facebook friends to connect with you, see your updates and also share your posts easily. Consider branding it like you brand your blog - use the same name as your blog. A separate Facebook page will also enable you to keep your blog separate from your personal Facebook profile - this is useful if you don't want your family and friends to see that you've got a blog.

I syndicate my blog posts to Networked Blogs so when a post is published, the links automatically (though sometimes with a time delay) publish to my personal Facebook profile, my blog's Facebook page and Twitter.

Join in!

When you start a blog, you become part of a community. Enjoy that community! Find blogs in your niche. Comment on other blogs. Share the work of bloggers who you admire. Talk to people on your social media networks. Tell people in real life about your blog. Have fun!

Best of luck blogging, my friend :)

And that's it for now. I'm going to write about my writing process soon, because someone else has asked. Happy blogging!

Edit: that friend who asked me how to start a blog? He started it! Impressive work, Paul De Gelder.




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:

Statistics vs the desire to write

Write like someone's watching

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