The roundup: Thank you, Uber, MS Australia conference, Voices of 2013, You Am I.

What a busy few days! I'm exhausted! There's been a bit happening, hence the roundup title of this post.

Firstly, a big thank you for all the support you gave me following the taxi driver verbal abuse incident. So many friends, strangers and people in the media have shared my story. While I do encounter many rude people, the amount of lovely people I encounter, often because of the rude people, is multiplied tenfold. I was commissioned by Daily Life to write a personal account - you can read it here. Writing that article is contributing to my savings account for my next big trip (which I am planning for next year). There have been many silver linings. I am, however, still baffled that 13Cabs have not responded to my tweet or Facebook post. While I logged a formal complaint on Saturday, I expected their social media team to at least acknowledge this incident and advise that my tweet has been escalated. Not good enough.

Also, Uber, a luxury taxi service, has given me some credit to ensure I get home safely in future. I used Uber the night before I received verbal abuse in a 13Cabs taxi. I downloaded the free app to my iPhone, registered with Uber including inputting my debit card details. When I was ready to be driven home, I booked a car, and received notification of the driver's name, photo, car registration and estimated time of arrival by SMS and through the app. When the car arrived, I was excited that it was a luxury limousine, and even more impressed my lovely driver opened the door for both Tash and I. He dropped Tash at her destination and drove me home, making interesting conversation along the way. The car smelled nice, the driver was friendly and I got home safely - without being questioned about my skin. Uber is currently in Sydney and Melbourne and also in America. The Uber service is a little more expensive than a regular taxi service, but I highly recommend it. (Please note - I rode Uber complimentary last Wednesday night after attending a media launch, and Uber also contacted me on Twitter after a few friends suggested I use them following the abuse in the taxi. They offered me further credit so I can ride safely.)

On Friday I gave a talk about resilience and my skin at the Multiple Sclerosis Australia conference. I spoke to around 35 people - and while I had a prepared speech, I winged it, talking a lot about the difficult encounters but also how I live life to the full, despite. After my speech, I presented a master class on blogging, and after a presenter shuffle, I talked the group through the basics of social media - so they too can be online activists. I think I convinced a few of them to start using Twitter and even to blog. Debra Cerasa, CEO of MS Australia - pictured below, has been chatting to me on Twitter for about a year, and it was so lovely to be invited to speak, and also to chat to her and Kathie Melocco (conference facilitator) at the dinner and the conference. Debra has a cooking school, and I can't wait to go with my Mum.

I am very excited to announce that I'm a finalist in Parenting and Personal category of the Kidspot Voices of 2013 blogging competition. It's really nice to be recognised in the blogging industry, and to stand with some prominent bloggers - Kelly, Naomi, Kate and Trish. I had a piece published on the Voices of 2013 blog last week. I'll also be writing a few original posts for the competition, so look out for those. Thanks for supporting me, Alex, Bron, Pip, Sam and all at Kidspot, plus you lovely readers.

I went to see You Am I play at The Forum on Saturday night. They played their Hourly Daily and HiFi Way albums live and in full. I think Tim Rogers is the hottest man in Australian rock and roll.

My only regret in life is that I hadn't seen them live until recently. They were so full of energy, so tight and so fun! Tim Rogers works that stage, demading respect (asking the audience not to throw stuff after two pairs of undies were thrown at him) and swaggers sexily. I loved his jumps and arm swings. The new kid in the band, Davey Lane was such a star too, emulating Tim's riffs perfectly - and Tim was ribbing him about his youth, hair, dress sense and cheek bones. There were a few moments where Tim was heartfelt and vulnerable - talking about how much he's given up because of music, how he misses his little girl, but then realising that everything good in his life has come out of You Am I - including his little girl. At the end of the show, he looked physically worn out. He sat down on the drum podium, resting and reflecting. He looked around at the audience, swigging a drink and thanking us. I got a nod and a thanks after I mouthed thanks to Tim. Chrissie Francis took this photo - she was the only photographer in the pit, standing next to me. I love how it captures Tim's vulnerability and his humility. You can see more of Christine's photos here.

Again, thank you to everyone for your support. I feel very loved, and so lucky to have so many wonderful people in my life.

 

Discriminatory abuse from a taxi driver. Diversity training is urgently needed in the taxi industry.

Last night I caught a taxi home. The hotel concierge called it for me, from the Mantra on Russell. I got in the taxi, the driver fiddled with the meter for a minute, and then turned around to ask me where I needed to go. He saw my face, and then asked "what's that smell?".

"What smell?" I asked him. He turned on the light and had a better look at me. (Because that's what happens when you have a visible difference. People look twice, to see if they saw it right the first time.)

"What's on your face?" he asked. "You smell".

I asked him if he wanted me out of his taxi. He said no, but he's worried that my face and smell would damage his car. We had not driven anywhere.

I got out straight away. I did not feel safe. Before shutting the car door I looked him the eye and said "fuck you".

I returned to the hotel lobby, asked for another taxi, told them briefly what happened, and burst into tears.

I didn't get the taxi driver's number. But I've since spoken to the hotel concierge who told me that they can track the booking and get those details from the taxi company. I will make a report.

The irony of last night's situation was that I was catching a taxi home because I had just been at a conference dinner. A conference for Multiple Sclerosis Australia, where disability advocacy issues were being discussed, and people with MS were being empowered.

The second irony is that today I will be speaking at the conference. I will be speaking about my skin and how having a visible difference has made me resilient.

I'm resilient. But I should not have to be reslient all the time. I should not have to put up with or rise above or let it go. I should have the right to get on with my day or night without strangers (and especially service people who I pay) intruding on my privacy, questioning my appearance and making judgments on first sight.

While I have met some lovely taxi drivers, this is not the first time within a year that I have been questioned about my skin in a taxi.

I was told not to touch the seats of a taxi as I was taken home from the airport in October last year - the driver was scared my skin would ruin his seats - he told me he was very concerned for future passengers. But what about the current passenger he had a duty of care to get home safely? What about the Disability Discrimination Act and the Victorian Taxi Directorate Code of Conduct including their commitment to people with disabilities?

After a Bob Evans concert in May, a friend and I shared a taxi home. Before I got in, he asked my friend how much I'd had to drink. She let me answer. I had three drinks very early that night. I was not drunk. I was not disruptive. I just wanted to get home at 1.30 am. He thought I was drunk because my face looked flushed, like someone who had been drinking. And he told me that previous passengers had been as red as me and very drunk. It is not my role as a paying passenger to justify how much I've had to drink when I am clearly not behaving drunkly, nor why I look the way I do.

I believe the taxi industry needs mandatory training about diversity, visible difference disability, tolerance, respect and social etiquette. I have been with disabled friends who have been refused a ride because of their disability. I've heard of indigenous Australians who were allegedly refused a taxi because of the colour of their skin. A friend told me that a taxi driver refused her a short trip when she was pregant, telling her she was fat and needed the walk. This treatment from employees within a necessary service industry is not acceptable.

I don't know if writing this will make a difference. I don't know if reporting the taxi driver will change anything either. But after talking about my experience on social media, it appears many others have had enough of this behaviour. Thank you to everyone who sent kind words last night.

I could have caught the train last night. It was just past 9.00. But it was dark and cold and I was tired. The CEO of MS Australia wanted to give me a cab voucher so I'd get home safe. I eventually did, but for a moment, I didn't feel safe. The confines of a closed car, especially when moving, makes these abusive situations all the more scary.

We have the right to get home safely - without physical or verbal assault. If we can't feel safe in a taxi, how will we get home?

There has been an update on this situation: the hotel has tracked down the driver's details from the booking and have made a complaint. I have made a complaint too. The media has also picked up this story - read it on NineMSN.

I don't ask people to share my posts often. But I'd appreciate it if you shared this one. Thank you.

 

We're not here for your entertainment. Why I'm boycotting Embarrassing Bodies.

This is not an embarrassing body.

 

I have an admission to make. I have never watched a full episode of Embarrassing Bodies in my life. I will not be watching it. But I have a strong opinion on the show. I believe that it is voyeuristic and similar to The Biggest Loser, it is body shaming. A friend described it as "gutter trash". I agree. It's the modern day freak show designed to make television executives lots of money.

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Many illnesses and conditions are featured - obesity, dental hygiene, cancer, breasts, vaginas and men's health, to name a few. It's not a caring or sensitive show. If it was, it would not have the word 'embarrassing' in the title. I believe the GPs involved in the show are morally unconscionable - with no regard for their patients' privacy or likelihood of ridicule once the show airs on television. The show's about shock value and ratings (it's cited as the most watched show on the UK's Channel 4, and it used to be called Embarrassing Illnesses).

I also do not know why the patients on the show would rather expose their so called embarrassing bodies on worldwide television than see a doctor behind closed doors. The Guardian examines why people so readily expose themselves on the show, and how it's helping people seek treatment for their conditions (it's an insightful read, still leaving me puzzled). I wonder how many patients on the show regret it later, or need counselling from the reactions to the show? - I would love to hear from someone that has featured on the show!

Last year Ichthyosis was featured on Embarrassing Bodies. I wrote to Channel 9 about this:

Dear Channel 9. Apparently Ichthyosis features on Embarrassing Bodies tonight. I have this condition. It is medically and socially challenging. It is not a mode for TV condition. It is my reality.

While raising awareness is good, it saddens me that this condition is labeled 'embarrassing'. Sensationalist exploitation.

I'm not watching it. I'd prefer if no one watched it. I want for the day when people with disabilities and chronic illnesses are not exploited by the media.

This type of media only perpetuates the idea that different bodies and appearances are something to be ashamed about.

And this body of mine is something to be proud of, not embarrassed about.

In response to my letter to Channel 9, some Facebook users defended the show as compassionate, educative and interesting. I lost friends over my stance on the show (especially since I hadn't watched it then - though I did search the Ichthyosis segment after friends' comments to me, and my feelings about it had not changed once I watched the show). But I believe that just being affected by a condition featured on Embarassing Bodies is enough to form an opinion on it.

While the show's title and content makes me angry, it's the related commentary about it that makes me more disappointed. The commentary around Embarrassing Bodies is like sniggering in the schoolyard. News columnists are calling it "the horror". People are talking about it on social media. It's TV that you binge on - excited at the prospect and then throwing up at the gory details. I came across an audience analysis where data was captured about what people were saying about Embarrassing Bodies online. Some described it as their guilty pleasure, and another said they "can't wait to laugh at people then vomit".

This isn't how I want my condition discussed. I don't want Ichthyosis to be gratuitous fodder for someome to laugh at in someone's living room. And this isn't how I want my friends' iilnesses discussed.

My friend Friday, who has Parkinson's Disease, told me:

"I had never seen Embarrassing Bodies only heard about it from other friends. They way they described it sounded very distasteful and non compassionate. I wondered what made them want to watch it, but I also wonder what makes people watch Big Brother. I just don't get it.

Then one day I was searching YouTube for Parkinson's related clips and found the embarrassing bodies segment on Parkinson's Disease. The way they presented, the language they used, it was all negative. It described it as being very embarrassing for people who have it. It was exactly the opposite of the message I try to send people about Living With Parkinson's.

People should not have to feel embarrassed or ashamed of the way they are because of things they can't control. We aren't talking about bad piercings or misspelled tattoos. It's the reality of people's entire lives. It's shouldn't be used as a freak show for ratings. People with these conditions deserve respect and acceptance. Telling people my condition is embarrassing is not educating or informing. It's insulting and insensitive.

How do we change perceptions of differences and promote acceptance if such negative words are used?

I think I achieve more with my YouTube clips about PD than bloody Embarrassing Bodies."

Embarrassing Bodies Downunder is currently being filmed in Australia. I've seen excited people share photos of sightings of the Embarrassing Bodies van on social media. A Twitter acquaintance working in the health industry told me they think Embarassing Bodies is "Docutainment" - they find it informative and educative. I told them the idea that people in health are watching the show for education makes me despair.

We're not here for your entertainment.

I write my own story so as not to perpetuate sensationalism and exploitation. I wrote about that in 2010, I still stand by that opinion now.

I hate that people get pleasure out of gross out viewing, gory images, being entertained by suffering from rare conditions and other peoples' embarrassment. I'd much rather people educate themselves by volunteering in a disability organisation, or seeking out stories told by people in their own words, like through blogs or YouTube videos rather than sensationalist programs like Embarrassing Bodies.

And if you are thinking about sharing your story on Embarrassing Bodies or a similar program, don't sell yourself short. Make your own media. Write or film your story for a reputable and sensitive media organisation. Join a support group. See your doctor behind closed doors. Don't be a victim of viewers' ridicule.

I'm boycotting Embarrassing Bodies. Are you?

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I'm so excited that I have been selected as a finalist in the BUPA Health Influencer Blog Awards in the 'positive life change' category. There are lots of other fantastic bloggers who are finalists - many of who are my friends. Congratulations everyone! Winners announced 12 July.

 

 

Appearance diversity: Jessica Smith's Join the Revolution

Jessica Smith, Paralympian, motivational speaker and body image activist, has created a campaign promoting healthy and positive body image. It's called Join the Revolution. I've participated at the end of this post.

She received a 2013 Layne Beachley Aim for the Stars grant to further the Join the Revolution campaign. I've asked her to write her story today. She's such a talented, positive and beautiful young woman - I'm so happy to feature her story here!

"Join The Revolution is a campaign I created with the sole aim of promoting positive body image. It was this campaign and the work I’ve done so far, that got me the Grant with Aim for The Stars.

It's really simple. I wanted a platform in which people could connect when it comes to Body Image – because these days, the opposite is what’s happening and more and more women and men feel isolated and disconnected from society due to their appearance and the societal pressure to conform to particular ideals.

So people get involved simply by holding the Join The Revolution sign (they need to print it) and then sharing their photo on social media.

 

Its about starting a positive conversation about Body Image – not size, weight, disability or any other ridiculous definition.

Join The Revolution is an awareness campaign aimed at promoting Positive Body Image. Born missing my left arm and then suffering third degree burns to my neck and chest as a toddler, my self esteem in regards to my appearance was always low. I grew up with a host of body image issues and I just felt so isolated and disconnected from family and friends because of the way I looked, I felt as though I didn’t fit in or belong.

Unfortunately the societal pressures to conform to an ‘ideal’ image took their toll and at 15 I was diagnosed with depression, bulimia and later anorexia. I battled with these illnesses for over a decade. I finally hit rock bottom in my early twenties and was hospitalised, however this was my turning point and the start of my recovery journey.

I saw firsthand the lack of services and understanding among society in regards to eating disorders and I knew that something needed to be done. I wanted to make it simple, as Eating Disorders and negative Body Image are extremely complex issues. So I decided to embark on a simple awareness campaign. I want people to start talking about these issues, because the more we talk the more chance we have of reducing the negative stigmas that are associated.

Join The Revolution is a platform in which people all over Australia and the world can unite on an issue that ironically is so isolating.

I began swimming from as young as I can remember. I loved being in the water, it was my sanctuary and form of escape in many ways. I first represented Australia at the age of 13 and my career highlight came in 2004 when I represented Australia in Athens.

Swimming and racing gave me self confidence, it was the one place where I felt ‘connected’ and accepted. I loved who I was when I was training and racing, it was the one thing I lived for – when behind closed doors I was struggling. Swimming gave me hope and when I was in the pool I didn’t think about all the negative crap that was going on in my life.

Ironically though, as I became more successful in the pool the pressures of being an elite athlete began to impact me, and I felt as though, once again, my appearance wasn’t good enough.

I became sicker and sicker, and ultimately my eating disorder cost me my swimming career.

I speak all over Australia at various events, however mainly school students where I conduct workshops focused on encouraging positive body image.

I received this from a girl I mentor just yesterday, so I thought it was appropriate to share:

" I think that above all else Jess has given me hope. Hope that there is life after an eating disorder. That recovery is worth the fight. And that you don't have to be defined by your eating disorder...but you can use it and your experience to help others. That acknowledging your fight is not weakness...but that it can help set you free. "

I have a responsibility to be a voice for all those who are currently struggling with negative body image. I need to be able to share their views and thoughts on a larger platform – with media and government, with the hope and aim that they will listen and things will be put in place for positive changes to occur.

I want Join the Revolution it to be nationally recognised and supported campaign. I know that if we talk more about the issues surrounding body image, we will inevitably help alleviate the stigmas associated, Join The Revolution gives people a reason to instigate such conversation.

(Layne Beachley spreading the positive body image message)

You can read more on my website, connect with me on Twitter, and share your photos on my Facebook page."

 

Social media tips: 10 pointers for live tweeting an event.

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I love live tweeting events. Since May, I live tweeted a disability conference, a blogging class and a few of the Emerging Writers Festival sessions.

I think that I got good at live tweeting because of sitting through so many uni lectures and taking pages and pages of notes, and also through six years of weekly minute taking in my day job. It’s finger callousing stuff.

I feel that live tweeting makes me concentrate on the discussion more than just sitting passively and listening. It is like joining into the conversation, only silently. And compared to note taking by hand, live tweeting is quick, interactive, useful as a summary for future pieces of writing, and benefits those not at a conference or event. Live tweeting makes it fun for those in the room and not at the conference. There’s been times I’ve tweeted funny stuff during an event, and I’ve had people in the room look up at me and smile, or reply to my tweet which results in fits of real life giggles.

Also, a message to event attendees: if you see me on my phone, I'm still paying attention, I am not bored, and I’m not being rude. In fact, I'm concentrating very hard to share the ideas with others. I understand not everyone will be using social media at the event, and there will be people in attendance that just won’t ‘get it’, but there will be many more who are appreciative of those live tweeting. Last year I went to the Business Chicks event featuring Ita Buttrose. I live tweeted her speech, and some of the women on my table looked at me wondering why I was on my phone when Ita and others were speaking, and others told me they just don’t understand or use Twitter. But Emma Isaacs, head of Business Chicks, came up to me thanking me for the tweets. It’s a great feeling to actively contribute to the discussion in a conference and share ideas with those unable to attend.

I’m attending a blogging event on Saturday, and I’ll be live tweeting it. Look out for my tweets: @carlyfindlay, and the hashtag to follow along will be #voicesof2013.

Here are my top 10 tips for live tweeting events:

1) Charge your devices.

Make sure your phone, tablet or laptop is fully charged. Take a charger and charge in the breaks. Better still - take two devices - one for tweeting on, the other for taking photos and making calls. I use my iPad to tweet (connecting it to WiFi) and my iPhone to Instagram, text and call people. I also have a battery pack for my iPhone - it gives me some quick charge without needing to plug my phone in to the power point. I just charge it at the wall before I leave home and plug it into my iPhone when the battery is low. It was great for when I was on the Human Brochure tour and there wasn’t a power point handy.

2) Connect to a network.

Some conferences have free wifi. Use it, but beware it may be patchy due to the volume of attendees also using the wifi. Don't rely on it – use your own wireless modem or mobile coverage. Also note that connecting to wifi can chew your battery, so see the tip above this one!

3) Provide some context.

Announce where you are, and that you’ll be live tweeting the event prior to starting the live tweets. I put this photo out on Instagram before I spoke and tweeted at Healthivate.

4) Use hashtags.

The event may have a hashtag (check with the organiser or other attendees whether it does), if not, create one – it may catch on. Hashtags will mean people will be able to follow along with the event even if they’re not there, or if they’re in attendance and want to review what was said during or afterward. Add one or two other relevant hashtags if there is room. Read my post about hashtags for advice and explanation about using hashtags.

5) Summarise what’s been said clearly and succinctly.

A tweet is a quick summary of an idea. You don’t need to tweet everything, just key points. Listen hard for those. Reference your quotes by either stating the name of who talking, or adding their Twitter handle if they have one. (Do a quick Twitter search of speakers listed on the program before the event starts. Event organisers - please put Twitter handles on the program if you encourage live tweeting.)

6) Tweet your opinion, but not too much.

Do tweet your opinion about the ideas discussed at the event, but try not to add them to every tweet (characters are limited). If I ask a question of the speaker, I will tweet my question after the discussion, and add another tweet expanding on my thoughts. Save your long-form opinions for a future blog post (see the final tip).

7) Tweet some pictures.

Tweet shots of PowerPoint slides being discussed at the event (make sure your photos are clear and readable!) or the speakers on stage. That's the picture I took when Jessica Gottlieb presented at Healthivafe.

 

8) Create a community.

Live tweeting brings followers and sharers, usually interested in what you are tweeting about. I get a couple of dozen re-tweets and follows when I live tweet conferences. Sometimes I receive questions or comments about the ideas or discussion I’ve tweeted – and I respond to these afterwards.

Even if you don't have many Twitter followers, using the hashtag will get your tweets out there to a bigger audience than your immediate Twitter followers. I guess people not attending a conference see a live tweeter as a bit of an expert in a subject.

9) Look up from your screen!

Give yourself a rest. Take breaks from live tweeting to just take in the content. I don’t live tweet everything – it’s tiring!

Use the breaks to connect face to face with event attendees.

10) Create a blog post from your tweets.

Use your live tweets in a blog post at a later date. Collate and expand on your thoughts. While I do copy and paste some of the live tweets/quotes into my blog posts, I don’t only use these. I add to the discussion by including my own opinion, in a well formulated, less stream of consciousness way. Writing the blog post is a great way to digest what was said at the conference and develop on the ideas discussed. I think that live tweeting rather than live blogging gives you a great chance to immediately share and then file away a lot of ideas to be used as content for a blog post. Reviewing and collating your tweets communicates the event a lot clearer than live blogging does.

 

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I asked Twitter friends (of course) what they got out of live tweets from events when they have not been in attendance:

@MJLeaver: "I get Insight into what is happening, feeling like I'm there, if they are good tweets."

@MsValissa: "Conferences often have lots of snippets of wisdom, bite-size recommendations, or just intro me to interesting people to follow."

@dzulyen: "I can follow in the comfort of my pyjamas and couch."

@danniellecresp: "I like the quotes from speakers on topics I'm interested in."

@danniellecresp: "I follow some of the OS conferences that I just can't afford to attend. Sometimes you get some gems of info. :)"

@whatjanesays: "If it's a subject I'm interested in I like following # of events. Usually find people to follow and a few pearls of info too."

What are your tips for live tweeting events? Have you live tweeted any events other than conferences?

 

Shane Warne the Musical. And my baffling crush on Shane Warne the cricketer.

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On Thursday night I was treated to a night out at the theatre to see Shane Warne the Musical. I was Tash's guest - she received the tickets from the Arts Centre Melbourne.

Eddie Perfect (who is quite perfect) starred as cricketer Shane Warne - and he certainly could pass for Warne's twin. He wrote the script and composed the music too. His voice is versatile - singing jazz, hitting the high and low notes, rapping and dancing. Perfect.

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Eddie updated the original 2008 show to include Shane's recent escapades. There was an orchestra, lighting and turf to represent the MCG, and a stellar cast featuring familiar faces.

Shane Warne the Musical showcased Shane's life - from 1988 when he was chosen to train at the AIS ("how do you spell success? AIS", the cast chanted), the birth of The Flipper (the famous bowling technique), receiving his baggy green, his marriage to Simone Callaghan, ALL the scandals, his retirement, the many, many brand ambassadorships (toy cars, poker, underwear, sunglasses - to name a few) and to his present day romance with Elizabeth Hurley.

Shane Jacobson featured as Terry Jenner, Shane's close mentor. Terry saw the potential in Shane and wanted to steer him on the right path, for he felt Shane also had (negative) potential to throw his career away by living a carefree lifestyle - perhaps how Terry had done in the past.

The show delved into the scandals he's been involved in. So many scandals. In the intermission, we overheard an audience member in front of us say, "You forget his much he's done in his life. So much dodgy stuff to come." And she was so right!

There was the diuretics, sledging, match fixing, the explicit text messages to women, an affair with the British nurse, the shipment of baked beans to India...

It was the womanising that impacted on his marriage to Simone (played by Lisa McCune). The musical had a dig at how stupid she was for taking him back after the affairs and text messages.

The musical was hilarious - and so lyrically clever! Lots of references to cricket (a great slow-motion reenactment of The Ball of the Century) but equally as many references to Shane's personal life. My favourite was the scene when Shane and Simone met - the song was called Dancing with the Stars (Simone was a contestant on the show) and there was some clumsy dancing happening. The audience responded well - lots of laughter.

I also loved the addition of the Liz Hurley storyline - she was depicted as a ball breaker - showing Shane who is boss, and set the record straight on the surgery claims, singing "it's not surgery, it's love." Ha! There was a brilliant scene showing a recent kerfuffle Liz had with a journalist at an airport - telling her where to go - and in the musical, the journalist described being told to Fuck Off by Liz Hurley as the "highlight of her life."

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The show was thought provoking as it focused a lot on Warne as the Spin King - not in the spin bowling sense, but the publicity spin. Spinning chairs were used as visual props - representing the dizzying amount of brands he's affiliated with as well as the need to be present in the media almost all of the time. Twitter has been a great way Shane Warne has maintained a presence - often sharing too much information with the world.

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Shane Warne the brand is constantly being made over, and as the PR team cast sang, "we've got to keep him spinning or hell die." It did make me wonder how much Shane Warne thrives on being in the spotlight.

Eddie Perfect nails it, observing just how much Shane is present as a cultural icon - whether it's for his cricket, his many indiscretions on and off the field, or his lengthy list of cringeworthy moments. He's always reinventing himself so he takes to focus off the stupid things he's done for the world to remember him as a cricketing champion.

I remembered so much of the history detailed in Shane Warne the Musical - for Shane Warne was a big part of my life for a short time.

When I was a kid - 11-13 years old, I'd say, I had a crush on Shane Warne. It was back when he looked like this.

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I think I'd seen him in a magazine one day and thought bleached blonde hair and lips full of zinc cream was pretty hot. Before you Ian Healey could say "Bowl Shane", I had scrapbooks full of Shane Warne pictures, I'd written to Cricket Victoria for merchandise, bought Inside Edge magazine, collected a tin of cricket cards, read his biographies, toured the MCG and had posters of him modelling Just Jeans clothing plastered all over my bedroom walls. I was obsessed. And I didn't even like cricket. Still don't. It bores me. I don't understand it. But I'd watch it for Shane. I took some time off school once to watch the last test in Perth, just to see him looking hot on the pitch. What was I thinking?!

The pinnacle of my fandom was when I sent him and Simone a wedding present. It was a photo frame. A lovely wedding present. Except it had a picture of me in it. What?! I was 13. And I really really wanted him to that I was his biggest fan (despite not liking cricket). He wrote back!!!!!!!!!!!

I remember being SO EXCITED when that autographed note arrived. Dad laminated it and I was in awe for weeks.

I downplay the inappropriateness/baffling nature of my crush because it was before the text message scandal. I just thought he was a wholesome cricketer and faithful husband married to his Fosters promo girl sweetheart. While I have definitely moved on from this celebrity crush, I did enjoy reliving that period of fandom through watching Shane Warne the Musical.

Have you seen Shane Warne the Musical? What did you think?

Have you had a bizarre or inappropriate celebrity crush?

 

Crafty little hottie.

I made this for the Hottie Challenge, coordinated by Camille, to raise money for heart and lung transplant research.

The bouquet is for Camille's angel donor, and the butterfly is to represent Camille's new life.

For once, my craft turned out the same in real life as it looked in my head! I bought a hot water bottle cover - it's knitted from Target - and a bunch of fake flowers (which actually look quite pretty) plus some wire cutters, and snipped at the stems and leaves to create a flat bouquet. It's secured to the hot water bottle cover with superglue.

You can see some of the wonderful hotties on Camille's blog or search #hottiechallenge2013 on Instagram . Everyone's done such a great job :) Camille has made me laugh with her creation!

The hotties will be on display and for sale at Open Drawer on 7 July 2013

Visit Donate Life for more information about registering to be an organ and tissue donor.

 

One like = one prayer. How exploitative memes and online slacktivism is hurting real people.

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Please don't think that Facebook will donate money or prayers to sick or disabled children. I've seen a number of very distressing photos appear in my feed, with the caption "for every like, Facebook will donate money to save this baby/child". Similarly those photos of sick children with the caption "like if you think s/he is beautiful".

These photos do nothing to raise money for those in need. While they may raise awareness of disability and visible difference slightly, they are exploitative (do these children and their parents know their pictures are being used? I doubt it) and the comments below the pictures are often vile and inappropriate.

So stop liking, stop sharing, and stop exploiting these children whose pictures have been misused.

If you really want to help a sick baby or child, donate some money to a hospital or volunteer at a children's charity. Stop it with the SLACKtivism.

Most of the photos used in Facebook memes are stolen. Cyber impersonation. Photos are distributed of children in distressing conditions - enlarged heads, hooked up to life support machines or with severe skin conditions. Maybe the children are dead? It wouldn't surprise me - I've seen photos of dead animals in my Facebook feed before. These memes are used to drive traffic to company Facebook pages to make a profit.

Late last year, a photo of a baby with Harlequin Ichthyosis was stolen and distributed in a like for a prayer meme on footballer Lucas Moura's fan community Facebook page. This picture was several years old and was not captioned stating the baby's diagnosis was ichthyosis.To date, this photo has received over 1 million likes, over 27,000 comments and more than 4000 shares. Most comments are in disgust - for example "gross", some are sympathetic or wishing the baby prayers, and there are a few strong educative voices - explaining what Ichthyosis is and discouraging people from clicking on these Facebook memes.

DeDe, whose son has Ichthyosis, wrote a heartfelt post to educate the gawkers:

"Friday night I couldn't sleep after seeing a picture of a Harlequin baby being misused for attention on Facebook. Reading the comments made me nauseous especially since there was no information given about the baby as to what it was or how someone could really help. The only words connected to the picture were 1 LIKE = Get well soon. Seriously people? Do you really think that liking the picture is going to help the baby get well? Obviously not, just like all the other FB junk chain pictures saying LIKE if you respect, Ignore if you have no soul blahh blahh. It's disgusting what people will do for attention and I wasn't about to sit there and let all of the ignorant people continue to say horrible things about an innocent baby whose photo was stolen.

My immediate reaction was to comment on that photo to try and educate the commenters and trolls. Incredibly unsuccessful. As I commented with what the diagnosis was and added a FIRST link, I noticed it was useless because at least 30 new comments were coming in at the same time. Many people were commenting that it was baby Brenna and referred people to her site. Fortunately, I knew it wasn't Brenna since I had seen this picture when Evan was born. I fell asleep aggravated as the comments accumulated over 10,000 and the likes were reaching 500,000. There was obviously too many people wrapped up in this viral photo and impossible to educate them when thousands of comments were being posted as the minutes passed."

She also included a picture of her son Evan, as an antithesis to the One like = one prayer meme. If this went viral, at least there's some educative text with the pictures.

Confetti Skin also wrote an open letter to the Facebook page, providing some brief facts about Ichthyosis, and later, a post targeted at those who had liked the photo, with more in depth information about Ichthyosis, plus information about where people can donate of they are honestly interested in doing so.

These Facebook photo memes become viral and people gawk. They are used for voyeurism. The truth about a medical condition is lost as the ignorant and cruel publish assumptions and hateful comments - never to be educated about the disability or illness. Money is never raised or donated to the cause. They're exploitative.

Facecrooks, a site highlighting Facebook scams, says

"Facebook will NOT donate money to any cause based on the number of likes or shares that a photo receives. Several photos of injured or sick children and animals are circulating on Facebook claiming that Facebook will donate a certain amount of money for each like or share the photo receives.

Please do not share these photos with your friends. So many people have the mentality of, “What if it’s real.” Although they have good intentions, they probably don’t realize that spreading these photos can be painful to the parents and families of the children exploited by these hoaxes. Many of the children have passed, and imagine how devastating it would be for the parent to see the likeness of their child being misused in this way...

Please report any photo that you see like this to Facebook. If they receive enough complaints, then they will eventually take action. Do not comment on or share the photo with your friends, as this helps keep the hoax spreading." (Source)

Last year I came across Katie Johnson's story. Nine year old Katie has Downs Syndrome and was the victim of cyber impersonation. Her photo was taken and distributed without Katie or her parents' permission, and she was renamed as 'Mallory'. The photo was aimed at getting millions of Facebook 'likes'.

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That was the photo used, with the caption: "This is my sister Mallory. She has Down syndrome and doesn't think she's beautiful. Please like this photo so I can show her later that she truly is beautiful".

I contacted Katie's mum Terri, who writes a healthy living blog. She was kind enough to answer some questions for me.

I wanted to pitch a story for publication at the time I contacted her, but unfortunately time got away from me and I filed the interview away. And then I saw the humourous picture of the doctor above and wanted to share Katie and Terri's real story with you here.

How did you discover Katie's photo was being used?

"Complete strangers recognized what was happening to exploit Katie and tried to track down the original site where Katie's picture was stolen. They found my contact information and emailed me to apprise me of the situation."

How did you feel,when you saw it and the comments below it?

"It took a minute to completely absorb what was happening. Of course your first response is the mother bear response. The claws come out and you start thinking of ways to defend your daughter and attack back those who would take advantage of her. I was confused at the motivation. Clearly "likes" could not be the only motivation? Since then, it has come to my attention that people "farm" likes through sympathy or fear and than sell those sites for profit.

As far as the comment stream, of course I had two reactions. My instinctual reaction was to skim over the negative posts for two reasons. The first being that I didn't want those horrible things in my head in regards to my daughter and second because I didn't want to be angry. When you let your emotions control your reactions, you don't always make the best decisions for those involved. The positive comments, however, evoked a completely different response. The sheer number of people trying to support our daughter in regards to her self esteem (however misguided), but also defend her against the negative comments being made, restored my faith in humanity. We are talking numbers in the MILLIONS! Incredible!"

How can we educate people not to misuse photos of children and adults with disabilities online?

"I've really struggled with this issue because I don't want to pull Katie into viral traffic any more than she already has, and yet my eyes have been opened and my ignorance stripped. I can't just pretend it isn't happening. If sharing Katie's story can help protect others from cyber abuse, exploitation and profit than I am willing to do what I can. Educating ourselves and sharing that knowledge with others, on social networking sites, with our friends and families, etc. is the best way that I know of in today's cyber world.

I also believe that our attitude makes a big difference when sharing these stories. We need to remain positive, respectful and approachable so we don't alienate those we are trying to enlighten."

Does Katie know her photo was used? What are her thoughts?

"Katie does not know her photo was used and would not grasp the concept even if she did. We are grateful that she remains innocent in this horrible incident and yet realize that many other children, those with special needs and without may not be so lucky. That is why we need to get involved and educate ourselves so we can protect them."

You can read more about Katie on Terri's blog.

Please - I urge you not to like, comment on or share those One like = one prayer (or similar) Facebook memes, no matter how well intentioned you are. They will tug at peoples' heart strings, and they will, sadly, disgust people. But your slacktivism through clicks will do nothing to help their cause. Spreading the photos further only hurts the pictured children and their families more. It raises little awareness of disabilities and medical conditions, and raises no money. None. Do something tangible to help children in similar situations. Do something more than just liking a picture on Facebook. The Internet can be used to do so much good.

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Terri Johnson has provided some advice for acting against cyber impersonation crime in America on her blog:

"If you would like to explore what you can do to protect against the exploitation and impersonation of children online we have found a great website where you can find out what laws exist in your state and how to contact your representatives to express the need to pass legislation in your area."

I did a search for cyber impersonation laws in Australia, and I think due to the relatively new phenomenon of the Internet, our laws are yet to catch up. The Australian Crime Commission may be of some use.

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Have you ever experienced cyber impersonation?

Do you click on those Facebook memes? Have you ever donated to a legitimate cause as a result of seeing a Facebook meme?

 

Go Red for Women - Whole of body health part two.

This post is sponsored by The Heart Foundation.

June is the Heart Foundation's Go Red for Women month. Heart disease is No.1 killer of Australian women. The Go Red for Women campaign is designed to raise awareness about women and heart disease, encourage women to understand the risks and make healthier choices to reduce their risk. It’s a great opportunity to find out how you can improve your heart health and help other women do the same.

As someone with a chronic illness, it is easier to focus on maintaining my skin condition at its optimum than monitoring my general health. The pain of my skin is so obvious - and the stress my heart and other internal organs may be under is not so obvious. But, like I wrote in April after going to a Heart Foundation cooking class, whole of body health is so important - especially heart health. I don’t want to be slowed down with poor health. I want to be present for my friends and family. I want to continue to enjoy the great life that I’ve created for myself. And so following on from that post – writing things down for the world keeps you accountable, right?! – I made an appointment with my GP, to get an overdue examination.

We talked a little about heart health. The Heart Foundation outlines the things you should discuss with your GP in this document. I didn't know that 90% of Australian women have at least one risk factor for heart disease, but on learning this fact, I did know that it'd be likely that I'd have at least one risk factor. And my appointment with my GP confirmed that I did.

The GP listened to my heart (just like Roxette sang) and took my blood pressure (normal – though it’s usually very low when I’m in hospital). I was pleased to know my blood pressure is optimal for low heart disease risk.

I was weighed and while I am not overweight, my GP encouraged me to lose a few kilos and to tone up a bit, so I can get back to the lower end of the BMI index. I’ve been mindful of my food intake (especially when at home) and plan to resume dance class next term. We talked about losing five kilos slowly and gently, which I think is doable. Weirdly I have been dreaming of getting my body moving – I dreamed of running on the treadmill the other night. It’s a sign. I still have a gym membership...

My GP asked me more questions about my lifestyle. I told him I am not a smoker (never smoked), drink moderately and eat a balanced diet full of fresh whole foods - which are all positives for good heart health. I have stocked up on porridge supplies for breakfast at my desk - five grain oats, nuts, LSA, chia, dates, plain yoghurt and frozen berries plus whatever fresh fruit I have on hand. I love starting the day off so well.

I then braved it and had a blood test which covered iron, cholesterol, diabetes, lipids, vitamin D and my liver. I am pretty hardy when it comes to medical procedures but I don’t do blood tests very well. Ichthyosis means finding a vein can be very difficult – and I panic and it hurts even when the nurse is feeling for a vein, and then I cry. The nurse at the GP clinic couldn’t do the test while I was there because she couldn't find a vein, so I went to the pathology clinic at the hospital before my dermatology appointment. Fortunately the pathology nurse was a pro and she found a vein straight away, used a butterfly needle and it was all over in a minute. While I felt very faint, I didn’t cry. Or “cryperventilate” as a friend termed. Hah!

My blood test results will be in on Saturday - and depending on the results, I will make some more small changes to my lifestyle. (And Saturday is also when I go for that pap smear I've been putting off never had.)

It feels good to be to be taking responsibility for my whole of body health. It's not often I voluntarily have a blood test and put myself at risk of cryperventilating. But I know that results of my blood test along with the discussion with my GP, doing more physical activity and cutting down on the cheese and pork belly (to slim down my belly), will help me create a better lifestyle for a healthier heart so I can continue loving life for a long time.

To find out more about Women and Heart Disease, you can read the facts in this brochure from the Heart Foundation.

You can also call the Health Information Service on 1300 362 787 during business hours (local charges apply). Ask them any questions about the concerns you have. And if you think you are experiencing the symptoms of a heart attack, call an ambulance immediately. A false alarm is the best outcome.

Disclaimer: I was paid to write this post and used medical information about heart health supplied and endorsed by doctors at the Heart Foundation and from my GP. My choice of GP was my own and the opinions expressed in this post are my own.

 

Preparing children for meeting people with visible differences.

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I believe that we should never make a negative comment about other peoples' appearances. But I know children can be curious. They can be cruel too.

 

These last few weeks I've seen a couple of online friends comment on the way other children react to their children who have Ichthyosis. Heartbreaking.

Another friend said a child in a chicken shop told her that her baby's face looks disgusting. She added "my heart breaks for my baby. Teach your children some respect!". So true.

Courtney and I discussed the need to prepare children for meeting people with visible difference, which inspired this post.

I also got some great comments from contributors to the Ichthyosis Awareness Month blog project.

From Peggy:

And from Jaime:

These responses both moved me to tears and also made me think about children's reactions to my visible difference.

Encountering children often fills me with dread. It brings back memories of being at school. I want to avoid children's direct honesty. Even more so, I don't want to be the scary person they see. Children are curious, but they can be cruel too - even if unintentional. And their words and actions can impact adults and children the same way.

I once stayed with a family who I thought should have known better. A family who has known me my whole life. They should have been prepared. For two days, I endured two children - aged six and eight - not looking at me. Being afraid. Not speaking to me unless prompted by their parents. It was tiring.

Their cuteness waned fast. I spent much of the time being polite, smiling my discomfort away, trying to make conversation. I asked the children's parents if I should explain about my skin. No, they told me. Then I asked them straight out, in front of their parents, do they want to ask me anything about my face? No. No. And still no conversation was made. In the end I told them, "I'm not talking to you if you're not talking to me."

Their parents put their behaviour down to shyness. I've seen the reactions of enough children to know they were not shy. What made it worse was that there was someone else that the children had not met also else staying over. The children did not react like they did around me with them.

What I had hoped was that this family would have prepared the children for my visit. I had hoped (especially in this age of social media) they would have seen my photo and been encouraged to ask polite questions. I had hoped that they were a little more appreciative of diversity. It was a difficult stay. I especially find it difficult that I didn't feel that I can raise this issue with the children's parents - I was a guest in their home.

But my experiences have not always been bad - like I have written about here and here. I also have a great memory of a time at my day job - my manager had her then seven year old nephew and his parents in at work one day. I'd heard lots about him, especially his intelligence and confidence, and was excited to meet him. (I expect him and his parents had heard a bit about me too.) We chatted for about 15 minutes - about lots of things like school and what he was going to do when he's 18. I could see him looking at me, curious. I smiled, and continue our conversation about everything else but my skin. When he left, he said "bye Carly", waved his hand around his face, and said "I hope your face will get better soon". It was such an emotional moment for me - he was clearly concerned and very thoughtful. I didn't want to break his heart by saying it won't get "better". And so I said "thank you".

I bumped into a good friend of mine at the local supermarket this past weekend. While she usually sees me dressed up for work, I commented to her that I always see her outside of work when I'm looking daggy - in my tracksuit and beanie and my face at its reddest. Sometimes I have scale in my hair. Her beautiful kids - aged two and three - smiled at me from the trolley, saying "Hi Carly" through chubby-cheeked mouthfuls of biscuit. On reflection for this piece of writing, I realised that her kids have never been wary around me. They've spoken to me, given me cuddles and laughed with me like my difference doesn't bother them. I sent her a quick text telling her that her kids have never seen me as different - and I am so thankful for that. She should be proud.

I do believe in educating children about diversity - after all, it's future generations who will change the world.

Children are curious about people with visible differences - because it's unusual, often a new experience. And children are also fearful. I think fear comes from people with visible differences represented as characterised villains in movies - they're people to be scared of. Think Scarface or Freddy Kruger or the witch in Snow White. Curiosity comes from encountering the unusual. I also believe negative, fearful perceptions of people with disabilities and visible differences come from voyeuristic, exploitative shows such as Embarrassing Bodies (more on that soon!) and the way diversity is depicted in the media, as well as how children's parents talk about and expose their children to diversity. I read this piece about a child's reaction to a woman in a burqua and was surprised that a mother just didn't know what to tell her child. Don't read the comments, just don't - it's the bottom of the Internet.

So what would be my advice for preparing children for meeting a person with a visible difference? (So I'm not seen to be providing all the advice to parents without being a parent, some of my friends who are parents weighed in too.)

Tell your child that everyone is different - people come in all colours and sizes and have lots of different skills. Talk to your child regularly about diversity at home. I am a strong believer that the responsibility to teach diversity lies with the parents.

Rachel, a mother of a child with Ichthyosis agrees. "I think it is the parents place to teach their children, the onus should never be on the person with the physical difference." Alicia, my friend from Uni, who has two little ones says "How does a child know that someone else's difference isn't the norm? Most of the time kids learn from what they are exposed to, good or bad. If my kids asked why Carly looks different i would try to explain but otherwise Carly is just like everyone else. I would like to encourage my kids to think about a persons character rather than what they look like."

Danielle says "as a family of 5 (me, my fiance and 3 children ), we accept and embrace 'differences ' both myself and my son are aspergers, so as a family we embrace difference, we try to educate our children that sometimes people can 'look' different but they don't 'feel' different, that everyone deserves love and acceptance as they are. Recently my son piped up in a conversation with his mates (he's 10) they had been speaking about a girl with a visible dark brithmark on her face he said 'she's still awesome who cares about her big freckle'. All 3 of my children say 'you can't decide who you love it just happens' when they hear of people in same sex relationships .... when I hear this I know I've done a good job."

Don't make something up as an answer for your child.

I hate a parent telling their child I've "been stupid in the sun." I'd prefer them to say "I don't know honey, maybe this woman would like to tell us about why she's got a red face?"

Prepare your child for your friend or visitor who has a visible difference. Show them a picture. Tell them your friend may do things a little differently to them - like using a wheelchair because they are unable to walk, or put cream on their face, or use a device that helps them to see, hear or talk. Tell them it's ok to ask questions. Tell them it's not ok to be rude.

A different Alicia told me: "I explain to my kids that we are all different. We all have something we don't like about ourselves. Something's aren't obvious some are. We shouldn't have to hide our differences or feel bad or ashamed of them. If we accept others as they are, people will accept us.

We have several family and friends who are vision impaired. I ask my kids do they think it matters to them the colour of my skin, or if one side of my face has dropped, or if I walk funny? Or does it matter how I treat them and the kind of person I be.

My son once asked me on a flight next to an Indian girl why her skin was dark and his wasn't. So we asked her about her heritage. Her parents were from India. She told him nearly everyone where she was from had darker skin. He asked why his wasn't. We explained it."

Ask your friend with a visible difference about the condition before you introduce them to your child. Ask your friend if they are ok to explain their visible difference.

Don't provide an excuse if they are rude or scared - like shyness.

If you encounter a stranger with a visible difference, encourage your child to say hello and preface the question with "I hope you don't mind me asking."

Don't be offended if I don't want want to explain my visible difference. Just like when adults approach my, children approaching me - and making a noisy scene - can be tiring too. It's a fine balance!

Laura told me a lot about how she encourages her children to ask questions, and when I said that questions can be tiring, she said "just because they want to know, doens't mean someone is emotionally available to be asked." Yes!

What about whether the person with a visible difference should speak up and explain the way they look to curious or rude children?

I understand that it can be embarrassing if your child asks questions about someone's visible difference. The shrieking, the repeated whys, the candidness. It can be hard for people with visible differences to answer these questions, especially if they're not confident. Don't be offended if a person with a visible difference, or their parent, find an innocent question hurtful.

Sometimes I wonder if parents want me to speak up if their child doesn't ask me about my skin directly.

Most of the time I smile at a curious child and then I usually say "everyone is different, I was born this way - like you were born with your blue eyes". Most of the time they understand and move on.

I put the question out to my Facebook friends and Twitter followers:

Parents, how would you like people with visible differences to explain their difference to your child?

Cheree says "Yes! Definitely speak up! If we were to walk past you and you overheard my kids say something about your appearance it'd probably make them stop and think again about saying something. I try to educate my kids that some people do have visible differences but that doesn't mean they are any different from us. But hearing it from someone with a visible difference might make them listen more and also understand how staring and words about appearances can hurt."

Alicia adds "I can teach my children acceptance and respect for differences and people but I can't always answer why people have those differences. I often explain to kids who are staring at me that I have Parkinson's Disease that makes me shake and walk funny. So I definitely encourage speaking up!"

People on Twitter replied succinctly:

EatShootBlog: Honesty + candidness + further explanation/discussion depending on age of kid and their questions.

newsflock: honestly, scientifically.

Hibblej: kids especially younger one's like my 4yo will ask all the innocent but awkward questions.

spillihpzil Honestly & matter-of-fact-ly. Kids understand more than some ppl give them credit for. Just because a body looks different doesn't mean the person is some exotic freakshow. Bodies are just different.

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I dont want to parent your child. I am happy to answer questions, and I realise children can learn just as much from a stranger as they can from their parents. But I will speak up if your child is being rude or cruel, or pointing, staring for an extended period of time or laughing, just like in the examples written about by my friends affected by Ichthyosis above.

Additional resources:

Talking to people with visible differences - my blog post.

Changing Faces - handling other people's reactions.

Happy Child - a perspective from a mother of a chronically ill child who just wants to be included.

Easy Peasy Kids - a Kind Eyes empathy initiative.

What advice do you have about teaching children about diversity?