When empathy hurts. Seeing skin conditions on screen

A friend sent me a link to a documentary called My Skin is Killing Me - it's about two people with severe skin conditions - a young American boy with Epidermolysis Bullosa, and a young Chinese man with Ichthyosis. It showed the medical and social pain of living with these conditions. Payton, the five year old in America, has raw skin that needs layers of bandages (like Nikki, who featured here last week). Even the slightest touch can cause it to shed. Cheng, in China, nicknamed 'Fish Boy' receives extreme intrusiveness in the form of staring and in-his-face ridicule.

(sources: Payton; Cheng)

My friend asked me what I thought of the documentary. I told her I wasn't able to watch it in full. While it showed very severe skin conditions, I didn't find it exploitative or sensationalist - in fact it did not seem like Embarrassing Bodies, nor was it factually incorrect, and so I tried to watch it. This wasn't acting or a fictional script written by someone who's never experienced the conditions before. It was real people sharing their own experiences. If I were to be really critical, while the documentary was aimed at being informative, it probably does serve as a lesson to people who have never experienced such physical and social pain - and it did have a little too much dramatic narration and music to drive home the severity of the skin conditions. I was, however, glad that the documentary showed just how important the skin is as a barrier to infection, and just how sore it can get.

The reason I couldn't watch the documentary in full because of the way I identified with the experiences shown. It was, perhaps selfishly, because my own level of empathy and shared experiences identified with the two people featured in the documentary. I was watching mirrored yet extreme shared experiences. When I saw Payton's fused feet and his skin coming off during dressing time - I winced and felt my skin tingle, knowingly. The pain must be unbearable. And my eyes moistened when Cheng said people often think he's a monster. It must be so incredibly difficult dealing with a mass of people having a fear of you.

My friend who sent me the video said to me "I know you deal with staring on a day to day basis.. but there is footage of people literally walking up to him and staring... and there was no shame in the staring."

I just can't watch this.

As strong and inclusive as I am, seeing hordes of people staring at Cheng would feel like flies swarming at me. I'd want to swat them away. When many people stare at me al at once, it does get overwhelming.

I've got privilege. There's a barrier between me and the TV screen, and I live in a completely different, and rather diverse, open-minded culture. I'm lucky not to be in that much pain all of the time, not to be surrounded by intense social stigma, and to have incredible medical and social support. The empathy I have for others with similar conditions can make realising the enormity of the medical and social challenges really confronting.

Leisa, who is short statured, wrote a wonderfully reflective blog post about being confronted by seeing her disability portrayed on screen:

"I've thought about it a lot over the years and I've come to the conclusion that I find it confronting seeing aspects of my own life played out in front of me - either on the screen or in the pages of a book. In daily life I'm kind of in control of what I see happening around me. I know it all happens - the stares, the comments, the poking of the mate in the ribs and having a laugh, the random pictures and videos taken on a smart phone - but I can somehow block it out to some extent and exist in my own bubble of ignorance.

But to see it up close and personal, highlighted on the screen, or written about in the pages of a book is too much and it hurts...and I'm confronting how I really feel about it...and how I really feel about myself and my own physicality. I watched Peter Dinklage walk and I asked the kids, "Do I walk like that?" They were not able to tell me. "What? He's just walking Mum and so do you." They didn't get it. I suppose this is because they've always been accustomed to having dwarfism around them whereas me, coming from an average statured family, this is all sometimes a "new" experience for me and seeing another image of myself in real human form is still a curiosity for me. Strange, but true."

These two paragraphs from Leisa resonate with me a lot. She wrote her post last month but I am still thinking about her words. There is an element of control I have in blocking out people's reactions and also managing the pain in my every day life, and when I saw pain and cruelty being shown on screen - happening to other people that I don't even know - I remembered the physical and social pain that I've encountered. I wanted their situations to improve so much. Perhaps I took pity on them in the same way I don't want pity directed at me? While I don't want a cure for myself, I do want for a cure to ease the suffering of those severely affected.

There's also the idea of "seeing another image of myself in real human form is still a curiosity for me" - I saw Cheng's face: the cracks, the inside out eyelids and thickened lips - and saw myself. I see myself in so many of my friends in the Ichthyosis community. I am fascinated by our bone structure, face shape, translucent skin, posture, brittle hair and white smiles. And I marvel that we are all one family.

I'm such a believer in sharing stories. They help others share their own stories and come to terms with their own experiences. I learnt that through running the Ichthyosis Awareness Month blog project.

But sometimes stories like my own can cut close to the bone, and I don't cope as well as I imagined I would. It's not that I don't care or acknowledge others' suffering. It's not because I want naivity or pretty packaging of quite messy conditions. It's because I've been there too - and I try not to think about the (relatively similar) difficult times that I've had - I just deal with them as they happen. Sometimes empathy hurts, it becomes sympathy. Sometimes I hurt for those I've never met. And protecting myself emotionally sometimes means making the choice to switch off situations that I identify with, just for a little while.

Do you feel uncomfortable seeing your medical condition shown on the screen? Does it reinforce the reality or severity of the condition for you?

(PS: I'm so excited to be published on BlogHer today! The health editor loved my Halloween scary face post!)

 

Appearance diversity: Scary face at Halloween

(source - Picture by Quentin Blake, from Roald Dahl's Witches)

 

When I was a small child, about three years old, I had a Snow White doll and a wicked stepmother doll. Snow White, of course, was beautiful - pale skin, ebony hair and a yellow and blue silk (probably highly flammable nylon) dress with puffed sleeves, and the wicked stepmother had a disfigured face. She was yellow, wrinkled and contorted, with a pronounced nose - complete with a wart on the tip - and long sharpened fingernails. I remember being scared of her - hiding my face when my parents brought her to me, playing with her less than what I did with Snow White, and even speaking badly to and of her. I stored her with her face down, not wanting to scare my other dolls with her face. She was a plastic doll, for goodness sake, but because she looked different, she scared me. She was, after all, the wicked stepmother, and her wickedness was depicted by her appearance. And, ironically, I didn't know any better.

Sometimes when a small child sees me, they are scared, and vocalise or gesticulate their fears. They tell their parents they're scared or hide behind their parents' legs. honestly, this saddens me - I don't want to scare anyone. I think that it's because they've not seen people with visible differences before, but I also believe it's because they have seen masks and screen characters who are depicted as evil. Think Freddy Kruger, Scarface and Two Face. Does this evil come about because the characters are lashing out over the misfortune of looking different and the associated social reactions?

(IMDB lists 31 films featuring people with disfigurements. The film synopses show that some of the characters who are disfigured are perceived as evil (some actually do commit evil acts) - but when others get to know them, they're regarded as normal - intelligent and beautiful even. A few of the story lines see characters' appearance become 'normal' upon finding love. Vomit.

A friend of mine who has a cleft palate said:

"I dislike it when horror movie characters are depicted as having facial abnormalities because of "inbreeding". I've lost count of the amount of times I've seen clefts & other facial anomalies depicted as being something that only happens to inbred weirdos, and that really bothers me because it's not at all true.")

At Halloween - a largely celebrated, primarily American holiday (but is creeping into Australian culture) held annually on 31 October, some people costume up as black face or similar cultural (mis)appropriation and (mis)representation.

There's a campaign started by Ohio University (and run at other American universities) called 'I'm a culture, not a costume' - educating students of the racial stereotyping through dressing up as a person from another culture.

(source)

Ryan Lombardi from the Students Teaching About Racism in Society (STARS) program at Ohio University told CNN:

"I think it's a clean way of raising awareness of how the costumes you choose might be offensive. In many cases, students aren't doing it maliciously, but they might not realize the consequences of their actions on others."

Furthermore, Jelani Cobb, a professor of Africana studies at Rutgers University, told CNN:

"The more we look at people as caricatures, the harder it is to operate as democracy," "What underlies this kind of costuming is the belief that these people aren't quite equal to what we are or aren't as American as we are, or that you as a person who's not a member of that group should be able to dictate how painful the stereotype should be."

Similarly at Halloween, an event steeped in supernatural and superstitious traditions, people don the scary face - they wear scary face masks and characterise themselves as well known evil characters with facial disfigurements. Most of the scary face masks represent depict evil, and are designed to shock. This store sells a huge range of Halloween masks - to change Halloween goers' faces into scarred, burned, contorted, eyeless, skinless characters.

(Skinned face picture source; Hugo the mutant picture source)

But what about the people who have to live with visible differences for their whole life. Our faces are not costumes, and nor should our faces be appropriated in them.

While I might be raining on the candy wrapper littered parade, I am wondering why scary face is still tolerated. Sure Halloween is a bit of fun, with trick or treating and a chance to dress up in a supernatural theme (or a character), but what message is dressing up as scary face giving about people living with facial difference? That people with disfigurements are to be feared, and mocked on this holiday? And why should people with disfigurements be mocked? (As an aside, Asda and Tesco - two English supermarkets - sold costumes mocking mental health. The costumes have since been removed from sale after Mind, an English mental health charity, spoke out about the costumes.) It's sad that some people's perceptions of visible difference may come from scary face at Halloween and on screen.

My friend Roni, whose six year old son Corbin has a prominent visible difference (a lymphatic malformation of the face) told me:

"I haven't seen much like that at Halloween, it's more been ghosts and zombies and the like, but I have always hated that villains from fairy tales were ugly or deformed, or that being ugly was a curse for ugly behaviour that was lifted when the character learned how to be "beautiful" on the inside, whereupon their outsides suddenly match. I do understand that fairy tales are medieval in origin, but still. Slight deviation from question, but I have been approached at comic cons and asked where Corbin got his mask from. I always wondered what they thought he was dressing up as."

Corbin and his family celebrated Halloween early, and I've seen some gorgeous pictures of him getting into the spirit of things - with face paint and zombie poses. Another friend with a visible difference told me seeing people dress up as scary face doesn't bother her too much. And Jack's grandmother said that while little Jack, who has Ichthyosis, loves trick or treating, a few people have asked him whether he's painted his face (a question I sometimes get - "I see you've painted your face tonight, a fancy dress party?", people ask me).

James Partridge, CEO of Changing Faces, who has previously spoken about the impact of disfigured screen characters, writes about Halloween masks on his blog. He's decided that while there is a problem with facial disfigurement depicted as evil, some children with facial disfigurements enjoy celebrating Halloween:

"The ghoulish and scary face masks that are sold in the annual mini retail boom around Hallowe’en – none of them are branded as ‘let’s pick on people with scars, eye patches and asymmetry’. They don’t need to. Everyone accepts – unwittingly perhaps? – that this is the time of year when children dress up to scare the wits out of others… and if the face masks are extreme, they simply reflect the idea that skulls and skeletons are ghostly and scary.

Is this OK?

Every year, Changing Faces has a problem with Hallowe’en. We debate it but always end up concluding that whilst it is tiresome to have facial disfigurement associated with evil (again), we don’t want to be kill-joys – and actually some children with disfigurements find the whole event rather fun too, able to indulge themselves behind a mask without worrying."

Perhaps for some with visible differences, Halloween is a chance to hide behind a mask, to temporarily change our appearances. As a child, I hated wearing a mask because of how it scratched my skin and left me feeling dry. But at times, I did want to have a different face. I wonder if children with visible differences who celebrate Halloween wear masks depicting beauty, rather than scary face? Princesses and princes, and characters they admire and appearances they aspire to have?

Maybe scary face isn't harming anyone - though I see it so similar to black face and cultural misrepresentation, and stereotyping of people with visible differences. STARS believe those who costume up as black face and other cultures aren't intending to cause offence, but aren't aware of the impacts on those affected. I'd like to see scary face ruled out as a Halloween costume, like STARS is aiming to do with it's racial awareness campaign. Maybe we can complain to costume manufacturers and distributors, requesting them to remove such masks from sale, explaining the offensive portrayal. Halloween revellers need to choose their costumes more cautiously. I know - the fun police strikes again - but there are so many ways to dress up at Halloween without being offensive. Personally, if I celebrated Halloween, I'd go a unicorn onesie.

Most of all, I'd like to see facial disfigurements portrayed more positively - as heroes, not villains.

 

Appearance diversity: Living Without Skin - Life with Epidermolysis Bullosa.

I first met Nikki online when she read my blog back in 2011. I think she left me a comment and I contacted her by Facebook. Nikki has a rare, extremely severe skin condition called Epidermolysis Bullosa (EB). Her condition is evidence of just how much skin affects the body's functions - her skin is raw and she's in pain a lot of the time. I can't imagine the pain she's in. The condition can be fatal, and in the time I've known Nikki, she's lost two close friends to EB, and been on the intensive care ward in hospital twice. It must be really hard to lose friends to the same condition you have while you're going through a life threatening experience.

I asked Nikki to tell her story for the appearance diversity series - and she has timed it well because today is the start of EB Awareness Week which runs from 25 - 31 October.

"Skin. The largest organ of the human body. Your body's first line of defence against injury, bacteria and infection from the outside world. The organ that everyone takes for granted...

Well I don't...

My name is Nikki and I'm 27 yrs old. I was born with Epidermolysis Bullosa or EB for short. EB is a genetic skin disorder where by the skin is so fragile that it blisters and tears at the slightest touch. An easy way to imagine it is that our skin is as fragile as a butterfly's wings (which is why EB children are often called Butterfly Children).

EB has been likened to having 2nd degree burns all over the body, except for one difference, while burns eventually heal, EB wounds are constantly coming and going. I have open wounds on most of my body and am therefore wrapped in bandages from head to toe every day of my life.

Daily life with EB can be very painful. Every day I must have my dressings changed which is a long, painful and stressful process to say the least. This involves taking off all the old bandages which can sometimes be stuck, washing the open wounds and then having new dressings applied. This process can take up to 2-4 hours. It is safe to say this is the worst time of day for children and adults with EB. You can always tell when it's getting to 'that time' of day on a person with EB because a little anxious furrow line will appear across their brow. No matter how much of a good day you are having there is always that knowledge in the back of your head that bath time is just around the corner.

(Nikki with Richard Dawkins)

When things are running smoothly I have a 3 monthly EB clinic at the hospital for a full body check for SCC's (Squamous Cell Carcinoma). I am also seen by every medical discipline all in one day as EB can affect every part of the body. I also have monthly renal clinics since having kidney failure.

My subtype of EB can be life threatening as we have about a 50% increased risk of SCC which is a very aggressive skin cancer. There is also the constant risk of infection as well.

While EB may not directly affect other organs, years of constant infections and inflammation can cause damage to other organs such as the kidneys. I have been unlucky enough to have this happen and am now on dialysis. If I have a kidney transplant I will be probably be the first EB person ever to have one which is both scary and....scary. Whether or not I would survive it...that's a whole other question.

Along with the physical pain, comes the emotional pain from constant stares and whispers of strangers. Then there's the innocent but no less hurtful comments from little kids like "Look at that girl!?, Yuck that girl's dirty!" I know they are just curious but well, kids can be cruel sometimes.

Sometimes people can mistakenly believe that EB is contagious but this is definitely not the case. EB is a genetic condition so you can hug me all you want and you won't catch anything! As long as you hug gently though!

I can go out but since I use a wheelchair mobility can be quite an issue. I usually go out with my family and friends to lunch or dinner or have my friends over to my house. During the summer though I tend to stay inside in the air conditioning as I get extremely hot with all my bandages on and cannot control my body temperature.

I studied up till yr 12 and then did 3 years of TAFE studying various Multimedia/IT/Graphic Design courses. After that my health declined and I have not studied any further, however I did teach myself Web Design and HTML and have done a bit of freelance work here and there. Things I enjoy doing to take my mind off EB include having good food with friends, Movies and DVD marathons, cryptic crosswords, building Lego, trying and failing to draw and most recently jigsaws!

I must admit its hard to stay resilient and there are often times I just want to give up. But I can't let that happen so I have to try my best to pick myself up and keep positive.

(Nikki with The Cranberries)

This week is EB awareness week and I want to use this post to educate and bring about awareness of EB to the public. For any parents reading this, teach your kids that if they come across someone with a physical difference like EB that there is nothing to be afraid of and we are just like them.

Currently there is no cure for EB and treatment is mainly based on the provision of very expensive dressings. While these dressings are funded under a very generous scheme from the Government, the EB support charity DEBRA Australia is non-government funded and relies solely on donations from the general public.

Since I was born DEBRA have been a great support to me and the EB community not only providing dressings and other medical equipment, installing air conditioners, but by offering a close knit community of other family members to share stories, tips and advice.

If you would like to help spread awareness and provide dressings and medical equipment for children and adults with EB please follow this link to DEBRA to donate. Your donation WILL make a difference as every little bit counts!"

Read Nikki's blog.

Follow Nikki on Twitter.

Read about Nikki in a Sydney Morning Herald article for Rare Disease Day.

Watch Nikki on ABC's 730.

Keep up to date with DEBRA on Facebook.

For more information about organ donation - so that one day Nikki might get her kidney transplant, visit Donate Life.

 

Chase that feeling

"And I’m a chase that feeling,

Take that pain and replace that feeling,

And I’m a take that healing then,

Stand so tall they’ll have to raise that ceiling man....

It’s got a hold on me, and I’m a chase that feeling,

Chase that feeling"

~ Chase that Feeling, The Hilltop Hoods

Words I thought I'd never utter: I can't wait to go for a run at 6.15 am. Excited about chasing that feeling. True.

I've been going to the gym for almost four weeks now. I've tried to go most days, or every second day. I love it! I'm doing cardio (walking, cycling, elliptical and running) and a weights program (squats, leg lifts, sit ups, chest presses and arm raises). I'm not good at it but I'm doing it!

I can't believe I ran 1.41 km on the treadmill last Friday - it was in around 11 minutes and was quite comfortable up to the 1 km mark. And on Monday, there were no treadmills available and so I ran 2.37 km on the elliptical trainer in 18 minutes. I'd say moving at 8-9 km an hour is running, yes? Yeah!

I didn't think I would love it as much. But once I discovered endorphins, and how regular exercise is changing my body for the better, I love it. I think it's improved my circulation as I feel warmer. I'm standing straighter. And not only am I feeling more toned, but my skin is radiant! Just radiant!

I've got lots of friends who are also posting their exercise adventures online, and this has motivated me even more. Some of them are like me - new to it and on a mission to just get moving to feel better.

Mornings are best for exercising - it gets my day off to a great start and my body is cooler than after work. I've worked out a good routine - to shower, put cream on and rest as soon as I've finished the workout - and this rest time ensures my skin feels comfortable for the day ahead. Also, the endorphins mean that I feel better through the day. Cheerier even.

I also have a veritable collection of gym outfits - leggings, tank tops and jackets, four sports bras, and an extra pair of sneakers (which seem to keep my feet cooler than my others, but don't offer the support I need. They look great though!).

Half an hour, even 45 minutes, is not a huge impost on my day. But I have found that if I'm not enjoying the music in the room, the time drags. I take my iPod and have been listening to Sia's collaborations with David Guetta and Flo Rida, Katy Perry's Roar, and Avicii's Levels - I don't know who I am anymore! The Hilltop Hoods have also been great to pace myself when running.

I'm conscious of what I'm eating - lots of vegetables, eggs, dairy, meat and fruit. And I'm so hungry - all of the time! I have only had one soft drink during this time, and I feel like I'm drinking less alcohol - stopping at two drinks when I do drink (mostly on a Friday and Saturday night).

Even more surprisingly, I decided to go in the swimming pool twice over the past weekend - and I loved it! I did some weight bearing movements standing up at the railing and with a pool noodle. I haven't been in the pool for quite some time. More please!

I'm not wanting to get skinny, I just want to feel strong and healthy. And I'm on my way. Isn't it great what the body can do?

(Source)

Have you made a commitment to exercise recently, after never doing it or enjoying it before? Do you love it?

What are your favourite songs to listen to when exercising?

 

Things I haven't told you about my Ichthyosis.

I was chatting to Pip Lincolne and Alex Brooks (from Kidspot) at the world's best breakfast buffet (QT hotel on the Gold Coast) and somehow the conversation came to the funny things that happen because of my Ichthyosis. I think it was because I couldn't open a bottle or something - I had to ask someone to do it. Alex and Pip asked me what other funny things happen, I mentioned a few, and they wanted to see a blog posts with the real facts about Ichthyosis. So here are the things I haven't told you (aka the things that make me laugh).

1. I can't really open jars or bottles. I'm too slippery. I do have a jar opener which helps a lot. Sometimes I have great trouble opening a wine bottle and I need to pop down to my neighbours to ask them to open it. Usually I am in my pyjamas. Last month none of then neighbours in my block of flats were home and so I popped across the road, in my pyjamas, to ask a neighbour I'd never met before to open the bottle of wine. "Hi, my name is Carly, I live across the road and I'd really like you to help me open this wine please." It makes for a good introduction.

2. I may give a boy pash rash if he is prone to acne. Years ago, mum asked why the boy I'd been kissing's face had so much of my cream on it. He also broke out in acne. We were 18, ok.

3. My finger prints don't work. I had a difficult time scanning my finger prints at LAX (and an equally as difficult time maintaining patience after a long haul flight, being questioned by the Customs officer and my fingerprints not working on the scanner. "Just scan my retinas", I suggested.) I also have trouble with the biometric thumb drive that I use in my day job. I needed to get it changed to a password lock rather than a thumb print lock. I think it's because the skin peels off. Other people with Ichthyosis have said they also have trouble with finger print scans. And don't even get me started on the bomb squad at LAX.

4. Skin renewal leads to a breast lift. My skin renews very fast - while this sounds a little gross, it forms big patches over my body through the day and night, and the can get a little uncomfortable until I wash it off in the shower. Sometimes, when I take my bra off at the end of the day, my boobs are just a little perkier - they're being supported by that extra layer of skin. Ha!

5. You can tell when I get embarrassed, get a fright or tell a lie. I go white. The colour drains from my face - it's really obvious that I'm embarrassed, frightened or lying. One time when I worked at the department store, there was a thief, and I was asked - over the phone - to keep an eye on him in my department until the police came. A customer asked me if I was ok, he could see I'd gone white - and while I said yes, my face said otherwise. "Is there a thief in the store?", he asked. "No", I told him, but my face screamed yes!

6. I have little to no body hair. There's a tiny amount of hair on my legs - like less than half a centimetre - and when I was 13 and not supposed to be reading Dolly Magazine, I stole a new razor out of my Dad's collection in the bathroom and shaved this tiny bit off. It didn't hurt me, but there was really no need. And there's no body hair anywhere else. This is money saving and painless and I have avoided a beautician looking at my vagina. My friends have tried to explain what happens during a Brazilian wax, and I cant even. Related: I don't ever need a spray tan. I would really like some eyelashes though. Eyelashes are my dream body part.

7. Sleep heals. And pales my skin. I was quite sore recently and had the day off my day job to get some rest. Sleep really does help. My body felt far less sore (the throbbing had subsided) after a three hour sleep, and my face was very clear, paler even. Here's an image of my face that you'll rarely see. Bed head! (Note: there is an Instagram filter on that photo but it was the one that best matched the colour of my skin in the daylight own that day.)

There's always a funny side to this condition. And some positives too! Rachel and Jennifer over at Confetti Skin also wrote about the nice things about Ichthyosis recently.

What strange/funny/interesting things happen to your body because of your chronic illness or disability?

Do you have any superhero skills because of your chronic illness or disability?

 

Conversations with a Creative - Rulitos

This is the first of my Conversations with a Creative series. I'm a big fan of handmade, especially jewellery, and I wanted to explore the creative process with the artist and showcase their products on my blog. Today is my friend Nerea Li Santi, who has a jewellery brand called Rulitos. I came to know Nerea through her Mum. Nerea made me a rabbit brooch that I love to wear on my winter coat. We met in person for the first time a couple of weeks ago - see picture at the end of the post! She's also got a little giveaway for a lucky reader. Meet Nerea.

Carly: What’s your name?

Nerea: "Nerea Li Santi."

What’s your business name?

"Rulitos."

Who works with you?

"I work on my lonesome, however my awesome folks live very near my workshop so they often bring me cups of tea (very important part of the biz) and dad’s on hand for things that require brute force (like moving my rolling mill or hydraulic press)"

What do you make?

"Predominantly sterling silver jewellery and accessories for guys and girls."

How long have you been making your art?

"I have been making jewellery and accessories for at least half of my life, however I took my first little silversmithing course and settled on silver as a favourite medium 5 years ago."

Tell me about your creative process? Where do you get ideas from? Where do you source materials?

"Many of my creations come from trying to teach myself a new skill or to use a new tool. Because I haven’t studied the craft formally (apart from a few CAE courses), I like to challenge myself and work new techniques into my pieces. I was obsessed with rivets for a while, then moved on to hinges, then vitreous enamel, right now it’s all about my new (old) rolling mill. I also have a couple of muses whose style I love, I often find myself creating pieces to fit in with their particular panache.

Like a lot of silversmiths I know of, I mostly source my metal from a fab company in NSW whose silver is all recycled (“refine, don’t mine!”), for other bits and pieces I try to stick to local bricks & mortar shops (or the online presence of said bricks & mortar!) The first time I walked into the Aladdin’s cave of jewellers supplies that is Koodak (up the lifts in the Century Building in Melbs) I felt like a kid in a candy store."

Do you balance a day job with your creative pursuit? Is this hard? If your artmaking is your day job, did you have to consider making a jump from a day job?

"I am very lucky to have a great day job. As soon as I log off my computer at the end of the day my work is done, unlike previous jobs I’ve had where I’ve been switched on, or on call, or stressing about work at night or in my dreams, this job allows me the brain space to use my free time as I please.

When I’m not marathoning Breaking Bad, I find I have enough time for a good work/creativity balance, don’t ask me about my social life though!"

What drives you to create?

"Quite simply, I love what I do, so that drives me to do it! I can’t imagine a world where I wasn’t creating *something* anything. Any of my colleagues could attest to the fact that I cannot keep my hands still for a second; every scrap of paper within my reach is full of scribbles."

Are there any other creative things you do?

In my past life I studied performance art (the Stelarc/Laurie Anderson style, not the Shakespeare/Westside Story style); that was fun! I’ve also been known to make: plushies, clothes, leather goods, doodles of bunny-heads on the back of every envelope and obnoxious noises from my melodica, stylophone, cello, quena traversa, kalimba and duck-ocarina but I unfortunately have little/no skill in any of those things.

What’s the hardest thing about being a creative?

For me, the admin part. I’m not the best at pimping my wares! I’m also not a great writer or photographer or social-media-er. Writing descriptions or artist statements for my pieces and product photography I find daunting and sometimes stressful. I know I’m not the first maker to be surrounded by bits of white fabric, lights and tripods to be saying to themselves “I JUST WANNA MAKE STUFF!”

What’s the best thing about being a creative?

"Not much beats the thrill of kind feedback. An Instagram of something I’ve made in its new home, or bumping into someone wearing something I’ve made equals serious internal happy-dancing. I also get a thrill from seeing how far and wide my wares go, US, Netherlands, New Zealand, Austria, UK, Spain, Canada, all over OZ a start. A recent customer apologised for delayed feedback, he had no internet on account of being out in the Ukrainian woods HA! If I can’t travel at least a little piece of me can.

Oh and the other best thing, turning a rough little piece of metal into something that someone could treasure, that’s a best. After 5 years of doing this, I still get pleased and surprised at how gorgeous, smooth and shiny silver gets after losing my fingertips to 5 billion grits of emery."

Tell me about the creative community? Are you a part of it? Online/offline/markets/classes?

"At the moment I am a little bit of a recluse, I’ve not this year gotten out and about in the community as much as I’d like. Instagram however has been really fab lately; I’m blown away constantly by the gorgeous community of Aussie makers (and their pets and rugrats) on there and what they get up to every day. I love seeing snaps of their process from inception sketches to the finished product and it’s quite wild for example seeing a picture on Insty of a ceramic cup about to go into the kiln, and then tootling off to a market and buying a cup from that very same batch, it makes the world seem so small! I went to Finders Keepers two weeks ago and felt like running up to half the stall holders and shouting “I LOVE YOUR WORK, I FOLLOW YOU ON INSTAGRAM”, I managed restrained myself (for the most part)."

What advice would you give to up and coming creatives?

"If you’re in Victoria, I cannot recommend Craft Vic highly enough. They have so many helpful workshops and inspiring events.

Connect with creative people wherever you are, you’d be surprised how much you have in common and can learn from each other even if they’re a basket-weaver and you’re a soap-carver.

Try to do a little something creative 6 days a week, even if it’s not your main craft or biz, different interests and mediums can feed each other nicely.

This will probably sound foreign in these go-go-go times we live in but I strongly believe in one day off a week. My Sundays are sacred and untouchable. No work, no cleaning tools, no checking sales (as tempting as it is when I hear the Etsy 'CA-CHING!' on my phone), no answering Rulitos email full stop. My weekly break does wonders for my sanity, spirit and body too and because I made the decision long ago to set that day aside, I don't feel guilty about not doing the things I 'should be doing'. Also, without that day off, my family would forget my name and I would never have clean clothes or dishes."

How can we reach you? What’s your website, store, social media platforms?

You can find me on my website: www.rulitos.com.au or facebook or Instagram & Twitter.

You can buy my wares on Etsy or madeit.

What are you giving away to a lucky blog reader?

"I would like to give away a ‘Chirpy’ sterling silver bird pendant:

Chirpy the sweet bird is lovingly hand crafted out of .925 sterling silver.

He is about 3cm long from beak-tip to tail feather and at his tallest point is about 1.5cm tall.

Chirpy features fetching textured feathery wings and comes strung on a fine 45cm sterling silver chain."

If you'd like to win Chirpy, tell Nerea and I what creative pursuit you do in a comment below! Entries close 5.00 pm Friday 25 October 2013. Nerea will choose the winner!

 

Educating girls: Malala Yousafzai, I Am A Girl and Girl Rising.

I'm in awe at how passionate activist, 2013 Nobel Prize nominee and survivor, Malala Yousafzai is about educating herself and ensuring all children are educated. She believes education is the key to peace - the key to changing the world. Shot in the face by the Taliban in 2012, she said "I don't want revenge on the Taliban, I want education for sons and daughters of the Taliban.”

She believes education is a human right.

"Let us pick up our books and pens. They are our most powerful weapons. One child, one teacher, one pen and one book can change the world. Education is the only solution," Malala said.

Read more and listen to her only Austràlian interview.

Watch her full interview with Jon Stewart below.

 

I watched two films about girls rights this past month - I Am a Girl and Girl Rising. Both films told the true stories of girls (mostly living in developing countries) around the world. The films covered issues of child slavery, child marriage, slavery, sexual violence, young motherhood, education, embedded poverty cycles and cultural oppression.

Despite the difficult topics, both films showed courage and hope - and the important role of education to change these girls' situations. Education can not only change their individual situations, but their families' and the wider world. Just like Malala. These girls are so passionate about learning. They know their future depends on an education.

"We cannot reach the sun with wings crafted from feathers and wax and desperation." - Girl Rising.

Education gives people the strength and knowledge to reach the sun.

This post is for Blog Action Day - bringing together bloggers from different countries, interests and languages to blog about one important global topic on the same day - today, 16 October. This year's theme is human rights.

 

I don't want to be someone's heroic choice or the person they were too afraid of getting to know.

A friend told me that looking different is a pretty good dickhead filter. I've also found that barriers for people who look different or with disabilities are as much about other people's attitudes as a lack of ramps, captioning and sign language.

Last week I got a message via my online dating profile. I never actively seek out men on OkCupid, because I'm never quite what they expect ("you didn't tell me you were THAT red"), and there were those hideous experiences a couple of years ago, and the men who find me are always a little too unemployed or anti-social for my liking. But occasionally I get a message from someone. Very occasionally.

It was a nice first message, with many xs and os. He's a bit younger than me, and for a minute I felt very Samantha from Sex and the City. I made small talk with this guy - telling him I like writing, eating, seeing live music and travel. He asked me what I like to write - I sent him the link to my blog. And so he could read all about me, including why I look the way I do.

He replied: "I liked learning about your genetic disease, he told me. I still want to meet you."

Two things crossed my mind. I've been given a hesitant chance, and god, well meaning people can be condescending. He went on to say:

"I was hesistant but since i've gotten to know you, you seem like a very nice person. I can see why some people would be turned away but not me, i see your inner beauty. Well i was hesitant about sending you that first message. It took me a while to send the first message but i'm glad i did as i can see that you are a wonderful person inside and out."

While some parts of his message are very complimentary, it feels like a backhanded compliment. Having someone tell me they were hesitant of contacting me because of the way I look, that's not unexpected, but is quite confronting. And "I can see why someone would be turned away" by how I look - that is too. I experience this sort of stuff all the time, and while I'm used to it, doesn't mean it gets easier.

It felt as though he put his big girl panties on, and plucked up the courage to click on my profile, and then felt good about doing it. When he's realised I'm normal, just like everyone else (god I hate that phrase) he seemed to change his mind about what's worthy of love. And he didn't even understand why this comversation was hurtful.

While I dont think he meant to cause upset or offence, the conversation I had with this guy proved, once again, the limited awareness and poor perception of people who look different. And perhaps overall, a person who says this is a good person. But if they hesitate to say hello because of appearance, then maybe they're not the person for me.

Friends have experienced similar. Lauren, a friend who was overweight for a long time and has recently lost a considerable amount of weight, told me:

"When I lost weight I had a guy I used to see contact me and tell me 'gee I am spewing I dated you whilst you were fat especially now you are hot'" - adding "seriously do people have a filter between their pea brains and their mouths?".

Gina, who wrote for Ichthyosis Awareness Month, said:

"It's really weird to be made to feel like that. It's like, "Thanks but... No thanks." I have spent the better part of my life telling myself I am not much different in appearence from everyone else but that I am accepting of the fact that I do actually have drier skin than everyone else. And to have someone tell me that they basically had to look past my appearence to see how 'beautiful' I am is a not just a backhanded compliment, but a backhanded compliment that feels like a backhand in the face!"

I don't have a problem with talking about my condition - as you know I'm quite comfortable with it. What I do have a problem with is people being hesitant to start up a conversation with me because I look different, and when they do, feeling almost heroic for doing a good deed. I'm not keen on the "but you're normal like everyone else", nor people being curious enough to launch into a conversation about my appearance without the basic courtesy of saying hello.

Regarding the "looking past appearance" expression - this guy said to me that he was hesitant about my appearance but now he's looked past it, as though it's something that shouldn't be a part of my identity. As though it is something to actually look past - like you look past bad table manners and the price of airport food.

And on inner beauty - I'm a believer in inner beauty. It's about being a good person. But I don't think it should be a substitute for outer appearances when people don't quite know what to make of visible differences. Inner beauty is like normal is like just like everybody else.

It's ok for me to be proud of my identity and not to want to change how I look, and it's safe for others to come to get to know me. Tolerance and looking past disability seems like other expressions of not quite being comfortable with people with disabilities. (For more on "looking past", read Stella Young's wonderful letter to her younger self.) It's even ok for someone else to be proud of how I look, and not worry what others might think of them if they were to find someone who looks different attractive.

I don't want to be someone's second best, someone's heroic choice or the person they were too afraid of getting to know. Clicking on my online dating profile is not brave or doing a good deed.

 

The Step Changer panel at the Problogger Event - "Going beyond what everyone else is doing is what brings success."

(Pic via Mrs CeeCee)

My favourite session at the Problogger Event (pbevent) was the discussion between three of the nicest ladies in the blogging business - Andrea from Fox in Flats, Caz from yTravel Blog and Christina from Hair Romance. Their session was called 'The Step Changers' and covered the steps (read: HARD WORK) that have led these bloggers to success. Christina said, "everyone thinks you're lucky because they don't see the hard work behind your success. It's not one big success. It's a series of small successes. Celebrate those." Amen to this!

These three bloggers are blogging as their full time day job. While blogging and writing (and speaking) isn't my full time day job, it is my secondary career, and it has taken me a long time to do this. I work my full time job and dedicate a lot of hours to writing when I'm at home. I hope some brand new bloggers were in that audience to hear that making money blogging doesn't happen overnight. The session covered a number of themes: revealing yourself, collaboration, courage and self belief, guest posting and not giving up. Like most of the sessions at pbevent, the lessons that came out of this session can be implemented in many other careers and aspects of our lives.

Andrea writes Fox in Flats - a blog about practical and stylish fashion for busy mums. She's interviewed Peter Morrissey, Dannii Minogue and Sarah Murdoch. She's also created an ebook in conjunction with Ecco Shoes, and went to Copenhagen Fashion Week as an Ecco blogger. I first met Andrea in 2011, three weeks after she started her blog, and I am SO proud of what she's achieved since. Caz (and her husband Craig, the other half of yTravel Blog) are travellers - and their blog has enabled them to showcase and see many parts of Australia and the world. Caz and Craig have worked with Tourism Australia, Qantas, Canon, New Zealand Tourism and Cathay Pacific, to name a few. And Christina, blogging at Hair Romance and Nail Romance, does hair and nail styling tutorials, and has worked with Schwarzkopf and developed several ebooks

So many people ask me (and the bloggers I know) "How do you go from starting a blog with no readers to making it into a sustainable business?" All new bloggers start with no readers. I remember the day that my blog hit 1,000 views, and then 10,000 and then 1 Million! It didn't just happen. It took a lot of time writing, even when I thought (knew) no one was reading and a lot of self promotion. And gradually I got better at crafting blog posts. It still takes a lot of time! (If i told non-bloggers how much time I spend on the Internet and social media, theyd tell me I have lost touch with the real world!) The paid writing on publications away from my blog takes a lot of work too - as Clementine Ford said at the Melbourne Writers Festival, my blog has been my apprenticeship - it's got me noticed by editors, and blogging has got the ladies on pbevent step changer panel noticed too.

The reveal

The ladies said that success came to them when they dared to be honest and reveal something about themselves. For a long time Christina only revealed the back of her head, but when she put her face on her blog, readership and engagement increased. Andrea wrote a heartfelt piece about her mother who passed away from cancer for Witchery's White Shirt Day, and this resonated with many of her readers. And Craig from yTravel Blog wrote an epic post about how his and Caz's journey has not always been smooth, and it's taken many years and lots of struggle to get where they are today - and the readers' response was hugely positive. I related to all of these anecdotes - for when I first plucked up the courage to write candidly about my skin, on a particularly bad day of infection on my face when I didn't want to look in the mirror, my readers showed me the support I needed to keep writing about it. They wanted to know more and they wanted to support me. And since then, lots of people with visible differences have identified withmy story. And so my blog took the clear direction of focusing on what it's like to look different.

Collaboration

"Anyone who has success is because they're standing on the shoulders of giants", said Caz. Reach out. Work together. And Christina added "asking for help with blogging can lead to a strong friendship." Andrea said that Dannii Minogue told her she was a fan of Fox in Flats, and they'd been messaging each other on Twitter for a little while. She got the guts to ask Dannii, who is a mother to a toddler, if she would be keen being interviewed on the blog. Dannii said yes! Andrea went on to say "every time I don't feel like going to an event, that event is the time when something good, exciting, important will happen". I absolutely agree with asking someone to work with you. I pitch myself to editors all the time - sometimes it's fruitful, other times I get a no, but I know that these editors are now aware of my work and something may be a better fit in the future. Also, when Sam Johnson was talking about creating Love Your Sister at an event I went to in June 2012, I said to him that I'd love to offer him some alternative media in the form of a spot on my blog. He was keen, telling me they wanted to work with bloggers, and that he trusts me and my work. I sent him an email in November of last year asking if there was any news for the LYS launch date. We emailed back and forth and chatted on the phone to plan the interview for my blog before the launch. I made it happen - I am proud to be the first blogger who announced Love Your Sister. (Sam was a guest speaker at pbevent, and it's so great that as a result, more people are aware and wanting to get involved in his cause.) The ladies also spoke about bloggers collaborating with readers: Involve your readers. Ask them questions. Use their answers as blog content. "Make your readers the hero." They suggested asking their readers questions and turning them into blog posts.

"When you find someone you want to work with, pitch yourself", recommended Christina. Caz spoke about being persistent. "Don't take a no personally when you get a no. Learn from it. Don't give up", she said. She spoke of how persistent she and Craig were with finding a contact at a tourism company - finding ways to get to the person they needed to speak to by building relationships with others in the company. "Being persistent with your requests means you're building a relationship with more people in a company", she said.

Courage to believe in yourself

"Make an investment in yourself do a course, travel, pick up the phone rather than email. Make the change. Have the guts to try new things!", Christina said. Pitch to publishers, take a leap, invest in face to face meetings, travel, spend. Christina told us how she invested in a trip to New York to go to BlogHer and to meet potential clients face to face. It paid off. "It's often the gutsiest decisions that bring the best results. Learn new stuff, push yourself, move forward", Andrea said. She added: 'No matter how you feel, get up, dress up, show up and never give up!' Don't quit. At the quitting moments, amazing things happen." Caz affirmed: "Draw upon the strength of what you've previously achieved. Back yourself. Think about where you were a few years ago & be in awe of what you've been able to achieve. You're making a difference."

Guest posts

Guest posts were encouraged. Caz recommended "using guest posts to get yourself out there. Don't forget to include your Google authorship profile." Andrea added her advice: "try guest posting on a blog/site that has different content to yours, but a similar demographic." And Christina sugggested "carrying your brand over to the places you guest blog on." And so after this session, I pitched a guest post to yTravel blog who said yes! (I've still got to write it yet!)

Don't give up!

I think it is really easy for new bloggers, or even established ones, to want to quit. They feel like they're not being read. They find blogging a chore. They aren't sure what to blog about. Don't quit! You never know who might be reading your blog. "Every time I've wanted to quit, I get a message from a reader about the big difference I've made to their lives", Caz said. I've never felt like I have wanted to quit, but sometimes I feel there's nothing more to write about. And then, like Caz, I get an email or comment from a reader telling me I've made a difference, and I want to keep blogging forever. And I know there will always be an opportunity to blog about something, or for my blog to lead me to a bigger opportunity, and so I keep going. "Opportunity comes every single day. If you're not prepared, you're not going to respond to these opportunities", Caz finished with.

I caught up with an old friend for a drink the other night. She's a paediatric bone doctor (osteopath) and told me about her practice - Growing Bones. She's got a website and she was excited to tell me about her blog that she has, covering osteopathy for babies and children. She said that she loves researching and writing down what she's learnt and spoken to her clients about, and is confident her advice will help parents searching for a solution. My friend was also excited to receive comments from around the world - she can't believe the reach that a blog has. My friend admitted not knowing too much about blogging and social media but said the blogging and social media work she has been doing for her practice is something she really enjoys. She had no idea bloggers can make money from their blogs, nor about blog conferences or that you can meet bloggers in real life. I loved her enthusiasm about her blogging - an add on to her practice - and I knew that while she's only fresh and her blog is not well known yet, she doesn't want to give up anytime soon.

Success can be anything you want it to be

All three ladies on the step changers panel at pbevent belong to the Remarkables Group - Australia's first blogging agency. Belonging to a blogging agency seems to be a marker of success in the Australian blogging industry - but blogging markers of success can be anything you want them to be. For me my marker of successful blogging is being published in a publication that I admire, or being asked to speak at an event after someone read my blog, and especially receiving an email from a reader saying I helped them in some way. (Andrea said she thinks she's doing blogging right when she receives a beautiful email, tweet or card from a blog reader.) Your marker of blogging success might be that your comments have doubled in a year, or your post was shared by a reader or blogger that you respect, or that you've made some new friends.

Christina said "Going beyond what everyone else is doing is what brings success", and I think that is so true. Run your own blogging race, work hard and success, in whatever form you want, will come.

Thanks for a wonderful session, ladies. Yours was truly so worthwhile attending. And Christina, you have enviable hair.

You can read more of my experience at the Problogger Event here.

 

A letter to little ones born with Ichthyosis or a visible difference. A letter to little Me.

 

Dear all the little ones born with Ichthyosis or a visible difference, and dear little Me:

I want you to know that it will be ok. Life will be ok. Wonderful even.

There's a long journey ahead of you, with your daily care regime, specialist appointments and therapy. It will be hard - people will stare, say mean things and exclude you. I hope the children you grow up with are a little more aware and tolerant of diversity compared to when I was at school.

As you get a little older, it will get a lot easier. You find your tribe. It might be at school, or it might be in after school sports or a club. Or it might take a little more time - like when you get a part time job after school or start college. You'll find friends who will love you for your entire being. The way you look won't matter to them, but they'll also be so considerate of it. When you're in the trenches, they'll be by your side, just like your family.

Your family will always have your back. Sometimes it will be hard for them to see you in pain - medically and emotionally - but that's because they love you. They'll be the ones to see the real you - how much skin you shed, how much cream you get on every single thing you touch, and praise you like you've just won a gold medal at the Olympics when you reach every milestone. They'll love and fight for you.

The love that you're surrounded with is so powerful. Take that love and show others the same. If you see someone who hasn't got many friends or looks a little different, bring them into your life.

Work hard at school and then at college, if that's what you choose to do after school. Sometimes we feel the need to prove ourselves when we look different. Don't put too much pressure on yourself - stress might make your skin sore.

You can be anything you want to be. I wanted to be a writer and speaker, and now I am. My ichthyosis hasn't stopped me, in fact, it's got me places. Looking different will get you noticed.

Try not to compare yourself to others too much. You're who you are - an amazing person human being with so much to offer the world - and they are who they are. You may take a little more time to do things - and that's ok. The gold medal will be waiting for you. Sometimes it will he hard not being able to do things that same as others are doing - like going out in the heat, wearing sleeveless dresses and playing a lot of sports (those are the things I couldn't do - you may be able to do them!). Try modifying some of these activities - like going to play outside when the sun goes down, wear layers, and choosing a sport that doesn't hurt your skin too much.

My top two tips for daily care are: eat a good diet with plenty of fresh fruit, vegetables and protein. Ichthyosis means our bodies need lots of nutrients to grow new skin. I've also found that using sulfate-free shampoos and bath products are gentler on the skin and make my hair grow better.

Have a laugh at yourself. There are lots of funny moments having Ichthyosis. And seeing the funny side can help you through the dark days.

You don't have to explain the way you look to everyone who asks. It's none of their business. Just because you're used to being asked, doesn't mean you're going to be ok with being asked. You have the right to educate people on your own terms.

But when you do explain yourself, be polite (unless they aren't, and

even so, be polite because it will make them feel worse!). Explain your needs to those who need to know and will help you. Your teachers and your future employers. It makes life a little easier for everyone.

Medical technology is advancing all the time. You may be asked to be involved in treatment trials or new creams. While actively seeking a cure hasn't been something that has interested or fulfilled me, I encourage you to try new things that may make your life a little easier. But don't push yourself too much - sometimes seeking a cure can tire you out and compromise the great life you're already living.

Join a support group, like FIRST or ChIPS. Go on camps. No one will get you like others with similar conditions get you. And find a mentor that you can look up to and who can guide you. They'll benefit from this relationship as much as you will.

When you are upset, talk to someone. Tell your parents or your family, a teacher or adult friend you trust. Write your feelings down, or draw them in a picture. If things get really bad for you, talk to a professional counsellor. Don't keep your sad or angry feelings inside. You don't have to be alone.

There's beauty in difference. You're beautiful inside and out. Be proud of who you are. Look the world in the eye and smile.

Carly

This post was originally published on Blessed By Brenna for Celebrate Visual Difference Month.

I did a similar post a while ago, on wanting to travel back to 1985 - 1999, if you're interested.