Ichthyosis Awareness: Lucy and Chloe. Difference is nothing to be afraid of.

I have come into contact with so many people through writing about Ichthyosis. Many of them are parents of kids with Ichthyosis - and they've all got one thing in common. They're all fighting for their child's rights - both medical and social. I see so many of my own childhood experiences repeated - the exclusion and bullying. 20 years on and things haven't changed. Luckily the support network is bigger and so much more accessible though.

Lucy is a woman I admire - shes a mother to Aubry and Chloe - Chloe has Ichthyosis. Lucy is bold and outspoken and I love her assertiveness. She once said she got tattoos to make people stare at her rather than her daughter Chloe. How amazing is that?

Like many proud parents, Lucy posts pictures of her daughter on Facebook. Recently she wrote of how some of the photos of Chloe were reported as offensive and abusive. How awful. I wish people were not so ignorant to think this way about those with visible differences.

Lucy shares anecdotes of parenting Chloe - and while the encounters they've experienced make me sad, the kick arse way she handles them makes me smile.

A few weeks ago I saw this from Lucy:

"This little boy comes up and starts touching chloe.

Chloe let's him pick off a scale that's been bugging her with her help... boy goes back to his mom with it. She starts freaking out and grabs hand sanitizer that's on the stroller and starts telling him in a stern voice about not wanting to catch anything...

I run over "oh my gosh. You almost caught awesomeness. I can't believe it. Thank god your mom only allows you to catch rudeness and spread that around!"

The little boy looks at his mom and I shit you not says "why was I not suppose to touch her mom, she's not dirty." And there she sat not knowing what to say."

Lucy then commented:

"The best part was this little boy of no more than 4 years old. His approach to Chloe...

The wonder in his eyes. He shared with us the story of how he got this huge scab on his elbow from trying to ride his brothers bike. He was curious, he sympathized his elbow with chloes skin.

He asked if he could touch it, if it hurt to take the skin off. He thought it was the coolest thing to feel her skin and said how brave she was.

All I can hope is this mother sees that in her child and doesn't ruin that for him. He was an awesome kid."

And that there is a great example of how attitudes toward diversity are taught. Quite often children are so accepting of diversity, until their parents encourage them not to be.

Please teach your children that difference is nothing to be afraid of. And if they already show kindness and accept everyone, but you as an adult aren't so sure about interacting with people who look different and still have prejudices, let your children teach you something.

 

For more on teaching children about appearance diversity, click here. For advice for adults on talking to someone who looks different, click here. For more Ichthyosis awareness posts, click here.

 

Why I write.

I write because I love it.

I write to tell the world my story. I write to be published elsewhere.

I write because I love seeing the blank screen turn into something that others enjoy reading. It's like packaging my thoughts and sending them out to the world to help others.

I write to change people's perceptions of what it's like to look different, to influence situations like being abused by a taxi driver and then helping change the driver education, and having my photo misused on Reddit and responding to those trolls.

I write to think things through. And once I've written it, I don't have to answer to anyone. While I may have put an opinion out publicly, it doesn't mean I want to discuss my content on demand. A blog post is as final as I want it to be - though I do enjoy the comment banter and often add to the conversation after my blog has been published

I write to learn about myself. And boy have I learnt about myself since I started this blog. I've learnt my strengths and weaknesses and how to be outspoken and how to take criticism and how to be confident. I've learnt how to be a responsible public servant and social media user. I've learnt to put myself forward and not to get down when I don't get opportunities.

I write for myself but I am mindful that the more readers I have, the more I try to put out consistently quality content. And often I get stage fright, performance anxiety. I procrastinate because I don't think the words will be good enough. Hell, I took ages writing this post, saying out loud "now I will write".

I also write to learn about others. I leave anonymous comments on because I believe there are more good people than bad out there and the anonymous comment option makes people feel safe enough to reveal something about themselves on the internet. I love how me telling my story empowers others to tell theirs. I love how my readers share a piece of themselves in their comments - or identify with what I've written because they have experienced similar. And I'm so thankful.

How does my writing differ from others in it’s genre?

There aren't too many Australian chronic illness blogs that I know of. Those I do read are beautifully written and so powerful. I sometimes feel like we are in an under recognised niche - ignored by brands. But then I realise how much we are helping eachother and our readers with chronic illnesses and disabilities. We've got readers that span across all genres of blogs. And we really make a difference.

I'm doing this amazing course run by Pip Lincolne. It's aimed at newbies but I'm doing it with view to pretty my blog up, learn some new skills and meet a brand new blogging community. And it's fun! In my homework, I did a little task about why I blog. Writing validates our being and written goals keep us accountable. Here's some of my homework task:

What can I bring through blogging?:

I can bring honesty, authenticity, humour, advocacy and activism though my blog.

My ideal readers are:

A new mother with a baby born with Ichthyosis.

A teen or an adult who has felt alone because of their Ichthyosis or visible difference,

A person who had reservations about talking to someone who looks different.

Someone who enjoys good writing.

My readers will feel:

Less alone, relieved they've found someone else experiencing this rare condition, uplifted, educated, informed. A changed perspective about people with visible differences.

Blogging will make me feel:

Less alone. Uplifted. Part of a community. Gathered my thoughts. Blogging is therapy. Excited to do a doctorate in blogging empowering people with disability.

What am I working on?

I am working on blog posts and freelance articles. I'm also working on some speaking points for the MWF and PBEvent plus some other talks I have coming up.

I should be working on my memoir manuscript and getting invoices for writing done.

Why do I write what I do?

I write about myself and my condition to remove the sensationalism that surrounds Ichthyosis. Writing is cathartic and it brings me support from readers who are experiencing similar. Writing a blog also means that I can control the level of information I put out there (and that the public isn't misinformed about my condition).

Sometimes I worry that through so much writing and speaking about Ichthyosis, it defines me in a bad way. This has been hinted at by some people. But identity is important, something to be proud of. And writing about my Ichthyosis and appearance so candidly has helped me feel a part of a community and feel more confident than ever. It's also opened up more opportunities than I could ever have imagined.

The more I write about appearance diversity, the more I want to learn about it. It's interesting and diverse and it's my niche.

There will be critics, and perhaps I'm sensitive to them because I love and am proud of what I do. But I try not to let them weigh me down. I just keep on.

Writing a personal memoir in blog form can be viewed as very narcissistic and self indulgent. It is, I admit. It's nice to have the time to write about myself (and even nicer that people read it, and also pay for my words). I really like this article that Todd sent me - confessional writing is not self indulgent.

How does my writing process work?

I sometimes batch write blog posts on a Friday or Saturday night – usually over a glass (bottle!) of wine and by the fourth glass, my writing gets more animated! I schedule my posts for 7am weekdays. I write a lot after I finish my day job – maybe two hours two or three nights a week, and if I haven’t finished something I wake up early and write before work. I try to set aside three hours on the weekend to write too – either freelance articles or blog posts. I write in my day job too – a different type of writing though. I use my iPhone and iPad notes function the most. They are synced so I can pick up where I left off anytime and anywhere. I often write whole blog posts or articles using my phone on the train to work or while I am waiting for a friend. I don’t often use a computer. Sometimes I handwrite notes for myself but most of my writing is electronic. I’ve always got drafts on the go.

If I'm not well (which has been recently) I can usually still write, but I will do less of it because I am worried about the perception - if I'm home from my day job, how can I be well enough to write freelance, or even for my blog? I don't apologise for not blogging - I wrote about that last week. Life gets in the way.

If I'm really tired and think I should blog I will just post some pictures of travel or street art. I will also develop a Facebook status I wrote about something I'm passionate about. Sometimes if I write a FB post that gets a great reaction (conversations and likes) and I quite like the topic I've posted about, I convert it into a blog post and write more about that topic. I did a few of those on holidays where i was too tired to blog but just wanted to get something written about my day. I copied my FB post into my mac notepad and then developed a blog post at a later date. Worked well!

I've also got a lot of guest posts to edit and schedule - these work well when I am busy or sick, but they are usually more work than a blog post I write from scratch because of the editing, writing a lengthy introduction myself and follow up with the guest poster.

-

The Why I Write blog hop was passed to me by Lisa who blogs at Country Gypsies. Lisa is a single Mum of two teenagers, and a primary school teacher, who left Sydney six years ago for a tree change to the Southern Highlands Of NSW. Her family loves to travel, with their aim being reviving an old vintage caravan into a retro style and heading off on a big road trip. A good dream! She likes to say her writing is champagne comedy on a beer budget!!!!

In the spirit of showcasing brand new bloggers, I'm passing this on to two of my Blog With Pip classmates: Tash and Jade.

Tash writes at Stuff From The Suburbs and often posts about all of the imporant things-hair cuts, how she always knew Thomas from Offspring was no good, the awkwardness of going to a singles night-that pops into her head at work when she should be..ahem..working. She also occasionally writes about dealing with depression and anxiety too. She gets told to use her 'indoor voice' quite a bit, and can tell you where the good places are to find a good Iced Coffee in Ballarat, where she currently lives. Tash is also uncomfortable writing about herself in third person.

Jade is a naturopath from Sydney who blogs at Thyme and Me. She has a strong desire to make natural medicine more user friendly for everyone and show just how effective it can be.

Go say hello to Lisa, Tash and Jade! They'll be sharing why they write soon.

And tell me, why do you write? Why do you read blogs?

 

Where I want to be. Melbourne Writers Festival and Problogger.

It takes lots of hard work and a few years to 'make it' in blogging.

People new to the hobby/profession think it will be easy - bang out a few posts and bam! You'll have thousands of followers. It's not like that. It is a steep climb. After four years of having a Facebook page for my blog readers to connect with me, I finally reached 2000 likers last week! Some days I have 250 views, other days I have 2500 views. It's about making friends and professional contacts in the blogging and writing and appearance diversity worlds and nurturing these relationships. And it's about putting in the hours, on top of my day job.

Pleasingly, I have found my niche and am kicking off the little goals I've made for myself. These goals are all about being recognised for my writing and my commitment to appearance diversity. I feel like I'm where I want to be.

And today, I've got a few announcements that I want to share.

I am excited to announce that, after years of being an audience participant at the Melbourne Writers Festival, I am a presenter at this year's event!

I'm talking about modern memoir writing with four other writers. I love how blogging is seen as memoir writing and is taken seriously enough to be discussed on this panel.

Come to my panel - Oversharers Anonymous - at The Toff In Town on 26 August.

Secondly, I'm also excited to announce I'm speaking at the Problogger conference on 29 August. Problogger was so great last year - evangelical even.

It's sold out but there will live tweeting like last year (I think the hashtag will be #PBEvent, so keep an eye out. I'm talking about blogging for social good with Emma Stirling, Eden Riley and Stephen Ellis from World Vision Australia. Here's the session guide. What a panel! If there's anything you'd like me to cover on the day, just ask.

I am thankful to Lisa Dempster from MWF and Darren Rowse from Problogger for having me at their events. And thanks to Emma Stirling for choosing me on the panel. And I'm thankful to my amazing blogging community for helping me get there.

 

In sickness and in health

After I came out of hospital earlier this month, Adam would sit on our bed and tuck me in, making sure I was warm. He brought me my antibiotics on time, and breakfast in bed too. He carefully pushed the hair out of my eyes, cupped my face in his hands and kissed me. He would let me sleep in so that my shower was warm and bring me breakfast in bed. The love in his eyes was so sparkly. He's with me in sickness and in health.

Getting used to my skin has been a challenge for him - and for me. I wrote about the adjustment here. I've never been more aware of my skin than when someone else tells me how it looks and feels from their perspective. It's been snowflakes on undress and the bearded lady in the morning. It's been confused temperatures and surprises at my voracious appetite. He's held my hand through blood tests and cannulas and seen my legs bloody and raw during infection. Still, he's stuck by me.

The reality of Ichthyosis is that it's complex and needs explaining to new people. Just googling it is Russian roulette - there could be an image of a deceased foetus or an alarming statistic. And so this is why I tell my own story here, on my own terms - so people understand it better and don't take sensationalism as gospel. I never want to create fear around Ichthyosis. That fear creates assumptions and prejudice.

Friends with disabilities tell me the times when their partners have been praised for being brave.

Courageous for supposedly giving up an ideal life to be with them.

Saints for looking after them.

Confident for holding their lover's hand in the street.

It's a shame they're settling.

Fortunately none of those things have been said to me, yet. But I wonder if people are thinking that?

The last thing I want is to be a burden on my love. That's one of the biggest insults a person with a disability can receive. A burden. A liability. Dependent. A leaner. Like Graeme Innes (former Disability Discrimination Commisioner) writes, the concept of leaners and lifters is one that I don't accept.

While there's a certain amount of time he will spend caring for me when I'm out of action, the majority of time I'm very active - managing my own self care, working at my day job and writing and social media to pay the bills and for luxuries like clothes and travel, and enjoying life. I've built independence and resilience and budget for my medication and have chosen an employer with adequate conditions to cover my needs. I have managed. And we will manage together.

Of course there will be times when the roles will be reversed and I will be visiting him in hospital and cooking him chicken soup when he's congested. I'm with him in sickness and in health too.

Maybe I wasn't the girl he imagined he'd spend his life with. Perhaps I'm a little more high maintenance than he expected. But every day he tells me I'm beautiful and he loves me. And I love him. Together we will make it through.

As I wrote earlier this year, it will be hard but it will be worth it.

-

Adam writes cute poems for me, and this is one of his latest. I prettied it up through an app to treasure it forever. I am so lucky to have found this beautiful man to love!

 

 

MasterChef inspired mystery box challenge for my love.

Firstly, how cute is this?! Oh the romance.

Adam and I watch MasterChef together. He started off being openly bored about watching cooking shows - read: yawning - but now he's more eager than me. If I'm not home he will give me an update the next day. He is so tense watching the contestants stress, and tells me what he'd do if he had those ingredients or that pressure. He's also critical of the food or cooking methods - a sign that he's getting better at cooking.

He's taken to cooking too. I love seeing him go from unenthusiastic to enjoying pottering in the kitchen, buying ingredients and thinking of new ideas. One night at around 9.00 I said I felt like dessert and he went to the kitchen, shut the door and googled. He came out after two segments of When Love Comes to Town (the only night I watched it), waving his arms in the air, saying "it has to cool, it has to cool"! He made bread and butter pudding in a cup. It was surprisingly good, if a little eggy. Since then he's cooked two bread and butter puddings, some rum balls and brownies. He's also made a lot of delicious omelettes and pastas. And he experiments with hot chocolate flavours. He's so proud. And while I still cook the majority of meals, he helps me prepare. He's good to have around the house! When I was overseas, he said he was so thankful I taught him to cook for himself.

We are such a foodie couple. We eat out regularly (though have cut down due to wedding planning). And we talk about and dream about food a lot. He says to me often, "thank god you like eating cheese. I couldn't handle a girl who didn't". At home we like simple, fresh foods. Right now we eat a slow cooker meal a week - a curry or stew or a soup. We love a midweek pasta. And it's fun to make a pizza on the weekends.

Last night there was a MasterChef challenge where the contestants were given a mystery box of ingredients and a letter from their loved ones. So heartfelt. Some received ingredients they loved to cook with, others received ingredients that their loved ones wanted cooking for them.

Adam asked me what I'd include in his mystery box. I didn't tell him, I said I needed to think about it, and it would also be a fun blog post. And so it is.

Here are the ingredients I've chosen for Adam's MasterChef Mystery Box. Because food is love. And of course he'd have access to my well stocked pantry. I'm keeping the ingredients simple because I am playing to his strengths and that's how we eat, but he can cook as complicated as he can manage.

Wanton wrappers.

Because we love going out for dumplings and I think it'd be such fun to make them at home on a Saturday night. A few drinks, some music and us making dumplings. I'd love to make some tasty vegetarian ones - mushroom and tofu maybe. This would be a great starter.

Rib eye steak.

I hope he'd make a sweet and spicy dry rub to recreate that amazing steak we had from the Northcote butchers - we won the meat raffle at Bob Evans' concert in December.

Salad ingredients (greens, capsicum, beetroot, tomato etc).

He's great at salads. I hope he'd make a warm salad and season it with some interesting toppings like feta, toasted seeds and nuts and some fruit like cranberries or peaches.

Basic cake mix ingredients - butter, sugar, milk, flour, vanilla.

He loves to experiment with different flavours and I think he'd have fun creating a cake with extra ingredients like chocolate or spices or fruits.

I going to give him some of the ingredients and see what he does with them!

Bon appetite!

What MasterChef mystery box challenge would you give your loved ones?

Why do you choose these ingredients?

How big is food in your relationship?

PS: thank you for the love you showed me on my post about the big peel over the weekend. I'm still sore, but I'm slowly getting better. Your lovely words have buoyed me.

 

The big peel

I am never well when I get out of hospital. Well for my standards anyway. It's a place for treatment and discussions with doctors and educating nurses about a condition they've never heard of. But it's not a place for rest. Sleep is interrupted by peeling my legs off a plastic mattress after the sheet gets crumpled (I'm never taking a fitted sheet for granted again!) and the nurse wakes me up in the middle of the night to take my blood pressure. Hospital this time around showed me just how needle phobic I am - thrashing and shaking and cryperventilating over a tiny butterfly needle inserted in my wrist to insert the cannula. Ironically, the site that was treating my infection hurt more than my infected legs because of the cannula. I couldn't even look at the cannula site in the shower, I needed to keep it bandaged. I don't know how this phobia got so bad.

Right now my body's undergoing the big peel. It happens every two years or so, fortunately. Big pieces of skin fall off - first my legs then my torso and my hands and my feet peel last. They're the worst parts - my palms and soles are left without a protective layer of skin which makes it hard to touch things and walk. Already my shoes hurt my feet and I wish it was ok to wear sheepskin boots in public. And I spend five minutes gently taking my stockings off before a shower - they stick to my legs, pulling at the weepy bits, taking skin with them. So much of me is left behind.

I don't know why it happens - I guess it's about my body recovering from some sort of shock or trauma or stress or even busyness. So a big action packed international trip, hospital, grieving over a job lost, worrying about other things - that could be mild shock and massive busyness. Luck hasn't been on my side lately. But then again, it has, and I've got so many amazing things coming up.

It feels like my skin is too small for my body. There are little bloody cracks on my feet where they're trying to burst through the scaly layer of skin. My legs are The worst - throbbing and thin skinned, bleeding when I scratch them. I get bumped by people's grocery bags whew I travel on the train and I am too embarrassed to ask people to be careful with their bags. What kind of person bleeds because they've been bumped by someone's dinner ingredients in a plastic bag? I feel cold but my skin is too hot for my boy to snuggle me. It's quite difficult. I'm just sick of being sore.

Peeling every day makes me look youthful. Who needs microdermabrasion when you've got Ichthyosis? But the big peel is tiring and raw. I've asked for a few concessions this week. I've been picked up from work because it's been too cold and I'm too sore to walk to the station. And I had to forgo standing at Lorde because I could not last two hours.

I know that one day soon I will feel like my usual self. But it's hard to remember what no pain is like when there's so much pain. I try to see the positives in everything. Maybe my skin is shedding for new life. Is this what being a butterfly is like?

 

Facing my own prejudice about disability - Leisa's story. (And some Peter Dinklage and Hugh Jackman fangirling.)

Earlier this week I shared the story of facing my own prejudices. My friend Leisa, a short statured woman, wrote this piece inspired by me telling her that story. She read it out at the Emerging a Writers Festival Literary Salon in June, and I was wowed. (Leisa is pictured below, rocking a red dress.)

(Photo c/- Emerging Writers Festival.)

Leisa describes herself as a forty-something years young Australian woman with achondroplasia – the most common form of dwarfism – meaning that I do life at the height of the average seven year old.

She is the eldest of seven – no, not seven dwarfs – I was born into a family of average statured people and grew up in South Gippsland. Leisa is a mother of four adult children, a fitness fanatic who enjoys swimming and discovered running three years ago.

She blogs over at Life At My Level which chronicles her life with achondroplasia….but she says it's is also like personal therapy of some sorts. Her Facebook page is here.

Leisa is a roving reporter for Arts Access Victoria - recently interviewing Peter Dinklage and Hugh Jackman at the X-Men premiere! So amazing!

Meet Leisa.

"Recently I have become good friends with an amazing woman named Carly. Carly has a genetic condition called Ichthyosis which, in layman’s terms, means that she has red, scaly skin. This affects her appearance. She is such a dear person, strong, intelligent, kind and a wonderful self-advocate in educating others about appearance diversity. I am so pleased that we have become friends. Not long ago I learned that my new friend was once the target of some pretty hefty bullying by a group of people who, like me, had dwarfism.

Hearing Carly’s story prompted me to write my own piece about bullying – from the perspective of a bully.

I don't ever want anyone to think I was all sweetness and nice growing up.

The mindfulness that is now mine in adulthood did not always exist and sometimes, despite parental guidance and encouragement, I too engaged in the teasing and ridicule of other children who were deemed different...or who may not have been as clean as me, or those my peers saw as weird, or strange or annoying...or...worthy of being picked on just because...

Why do children do that? How do they start doing that? Why do they follow a pack mentality? Why do they engage in such behaviour even though their parents may model and encourage acceptance and love?

I don't know. I can cast my mind back and see it all happening but I cannot understand the mindset.

I remember a little girl called X who was part of a friendship circle we were in. All was well and fine until one day...we decided it wasn't. No rhyme, no reason. We decided to let her know that we hated her by writing her a note telling her she was as yucky and smelly and ugly as cow poo - complete with pictures. I remember contributing to that note by drawing the pictures with such glee! No thought to the potential consequences of such a note - just the pure enjoyment of writing such venom.

I believe the average age of the girls in our group was ten.

It was all fun and games until someone got hurt. I don't remember who delivered the terrible note...but I do remember that sweet little girls face crumple with grief and the way she sobbed and sobbed and showed the teacher.

I was mortified, ashamed, grief stricken. In my gleeful involvement I had not had the foresight to think of the consequences for this dear, sweet little girl; what it would feel like to be singled out and have your friendship group turn against you like that - with no warning! But I saw her face...and I knew...and I was ashamed.

The next morning we surrounded the girl of our own volition and told her how sorry we were. We asked forgiveness. I think there was an element of punishment avoidance behind our apology but I cannot forget how horrible I felt watching that little girl sob.

Obviously the teacher saw that there was a heartfelt resolution to the whole incident because she never got involved. I think she saw us all happily playing together and let us be.

Even though I never forgot that incident it didn't serve as enough of a lesson to stop me engaging in other forms of subtle bullying. In Year 9 at High School (why is Year 9 such a feral year?) my best friend and I made up nicknames for other students and teachers - those who were different, others with mental illnesses or disabilities or those we just didn't like and teachers with odd quirks. Blockhead, Spoon, Dude, Mr Jellylegs, Fräulein Lizardface. We never called them those names to their faces but I find myself wondering if they ever knew and sometimes I see their faces even now and wish I could turn back time and be less of a minion and more of an understanding individual.

Sometimes I fool myself into thinking that maybe the victim forgets these incidents, but logic says to me that if I, the bully, hasn’t forgotten, chances are the victim hasn’t either.

Time marches on and thankfully I left immature childhood behind. The faces of the past still flit through my mind sometimes and I remember them and send out good wishes to them in the hope that they are having a happy life. I’ve learned from incidents where I have been the target of bullying, rejection and cruelty – sometimes because of my dwarfism and sometimes for no reason at all. Life has been kind and has offered me opportunities to meet with people from the past and make amends, developing genuine friendships as a result. Adulthood and maturity is a great leveller.

Still, it saddens me to learn that sometimes even those of us with physical differences may not learn from our own experiences; that there are those who will target others with different quirks or an appearance diversity or even another disability and subject them to ridicule and bullying. I cannot understand or comprehend that mindset. I can't understand how those of us who know what it's like to be the target and recipient of bullying and ridicule can then turn around and inflict that kind of behaviour on another human being, simply because they may be different.

One of the truths that I try and remember when faced with discrimination and hurtful comments directed towards me is that I too, am capable of such darkness and in this, I try and journey forward with a clearer understanding of what it is like on both sides of the fence."

 

Facing my own prejudice about disability.

I follow a wonderful blog called This Little Miggy - she writes of her little girl who has a disability, and celebrates other children who have disabilities.

It struck me when I read this post where Miggy comes to terms with her own prejudices.

Miggy writes:

"I met a woman a few months ago who also has a limb difference. Just one arm affected. As we stood there talking, about limb differences--about her and my daughter--I realized I was a little uncomfortable.... with her difference. While I no longer feel this way about her difference--in fact I think she's a wonderful person and I look forward to each and every time I see her--that slight discomfort was there. Even if just for a few minutes."

I admired Miggy for being so public about it. It does take courage to openly write about your own prejudices when the purpose of your blog is to break down prejudices.

And I remembered that I filed away a piece I'd written about my own prejudices. Initially I submitted it to a website but it was not published. I got some feedback and rewrote it, unsure of where next I'd submit it. My fear was that I'd get a barrage of criticism, and I thought it'd be easier to deal with if I got paid for the article than if I put it up on my own blog for free. But then I read Miggy's post and Reddit happened. I can deal with critics. Toughen up princess, I told myself. Let them see your vulnerability. And so here's my own prejudice.

As a disability advocate and activist, I believe that I should be always championing diversity. I do my best to value diversity in all its forms. When I realised I may be indeed harbouring some prejudice, I resolved to change my beliefs. I wondered, does having a disability mean we should not harbour any prejudice to any marginalised groups?

I cringe when my able bodied friends and acquaintances make a homophobic, racist or disablist comment. I often speak up to say that's not right. And in the rare instance that I have heard a disabled friend or acquaintance make such a comment, I have been disappointed. Because I think they want acceptance and inclusion yet may not give members of our diverse community the same respect.

I wonder whether there is an expectation that our circumstance of having a disability should make us more compassionate and less prejudice, or whether some disabled people are, excuse the cliche, just like everyone else - racist, homophobic and disablist if a situation presents? In an ideal world, I believe having a disability should shape a person's values and attitudes in a positive way. But in the real world, I think we are just like everyone, prone to some sort of prejudice.

Six years ago I was harassed by a group of five short statured people. They were gathered, talking among themselves. They saw me walk past them and started pointing, shouting out how sunburnt I looked. I ignored it like I often do, continuing to walk on. Then they swore at me and made comments that I am ugly and that because I look like the way I do, I should be dead.

I couldn't believe that people who may also experience similar prejudice to me, because of their looks, could make such comments about mine. So I said something along the lines of "I thought you might think twice about making those comments, given your own appearance". They continued to harass me.

I was shaken, and couldn't quite believe the double standard that seemed to exist. I am aware that short statured people are often ridiculed because of their appearance, so how could they possibly do the same to me?

When I got home, I wrote about the experience on Facebook. Though I was factual about the situation, I was also emotional, and from memory, I may have written some derogatory things about their height. I'm not proud of this now, but at the time I was angry and shocked.

This was my first experience of prejudice and harassment from within the disability community. And turning it around, it was the first time I felt prejudiced toward a particular group of people with a disability, because of this one experience. I developed a fear of short statured people. I wasn't fearful of their disability, like some people are of mine. I was fearful of their attitude and behaviour. And perhaps because they had a disability, it was easy for me to place a negative label on short statured people.

The incident stayed with me for some time. When I saw short statured people in the area of that incident, I would lock my car, worried the group of short statured people would see me and strike again. I would often avoid walking past short statured people in the supermarket, just in case it was one of the people who harassed me.

Since that incident, I have done a lot of work within the disability community, writing, speaking and presenting on community TV. I often worry I don't know enough about disability to be an advocate, but every day I learn new things about disability, and always try to be accepting, aware and promoting of our diverse community. I have made many friends and professional contacts in the disability community too. So it's because of this advocacy role that I began to feel incredibly guilty of the fear I had toward short statured people because of this single experience.

It's cliched but I knew that I really needed to see the person, not the disability. Specifically, I needed to put this silly prejudice that all short statured people may harass me out of my mind. The harassment could come from any group of people. I needed to to take some of the advice that I'd been giving everyone else - to get to know the person before I judged what they look like, and not to make assumptions about their attitude and intelligence.

And so I did. I met a few short statured people at an event two years ago. They were so friendly, and we didn't ever mention our appearance. I've since become friends with Leisa, a wonderful short-statured woman who blogs at Life at My Level. We met at the Love Your Sister launch - Sam Johnson's send off, and our friendship blossomed. We recently spoke at an event together. She will be telling her own story here later this week.

I forgot my prejudices and realised that the behaviour of some people with a particular disability shouldn't shape the way I feel about the whole community. While I had a right to feel upset and offended, I should never have been that narrow minded.

 

A Mighty Girl

Oh wow!

I woke up to being featured on A Mighty Girl again! The post was a recap of what happened when I took on the trolls on Reddit.

I adore the A Mighty Girl Facebook page - it features pioneers and role models of all ages, and so it's an honour to be featured. Thanks team! (The link to the AMG feature is here.)

The A Mighty Girl audience is so supportive and I've been reading lovely comments this morning. I'm still quite sore and tired from my short hospital stay so these kind words have buoyed me.

Thank you to all of the new people who have visited my blog and liked my Facebook page so far. I hope you'll enjoy what I post.

If you're looking to find out more about Ichthyosis, visit this tab. If you're looking for some appearance diversity and Ichthyosis related resources, click here.

Thank you everyone and have a great Saturday!

 

Appearance diversity: Boob in a Box.

I came across Boob in a Box when the blogger, Julie, sent me a tweet telling me she'd mentioned me in a blog post about what it felt to look different because of cancer. I loved her post so much - it was another perspective on appearance diversity. And Julie is a great writer - so funny! Julie writes about her experience with breast cancer. She keeps her fake boob in a box. "If only the real one was still this pert", she says.

Meet Julie. She gave me permission to republish that amazing blog post.

"If there’s ever a nuclear disaster, there will be two things remaining once the mushroom cloud has settled – cockroaches and eyebrow hair. After my second chemotherapy treatment, all my body hair fell out pretty much instantaneously, except for about half my eyebrow hairs which held on through a further 12 weeks of chemotherapy. It was only those few hairs that stopped me from having to draw on my eyebrows. I have limited skills in the make-up application department, and was fearful that if left alone with an eyebrow pencil long enough, I would end up looking like a bald Joan Crawford.

I am an avid reader of a blog called Tune into Radio Carly, which is written by Carly Findlay who is an appearance activist, writer, speaker and tv presenter. Carly has a genetic skin condition called ichthyosis which causes her skin to be red and scaly, and therefore her appearance to be visibly different. I’ve learned so much from reading Carly’s blog over the past few years, and when I was bald, I got a tiny, brief insight into what it’s like being physically different.

I’ve certainly never been hot stuff or even remotely close, but have ‘average’ looks and fit into the standard white anglo mould, which has allowed me get through life in a pretty steady fashion. Then, in a matter of two months I had my right breast cut off and lost all the hair off my body (apart from the aforementioned eyebrow hairs). I was suddenly dropped bald head-first into the world of stares, double-takes and backward glances, which when you are already feeling very fragile, is not a nice place to be.

For the five weeks after I had the mastectomy, I had to get about with a very dodgy pretend boob which used to try to sit on my shoulder like a pillowy parrot. I suspect that nobody else in the supermarket was looking at me closely enough to actually notice, but it made me really self-conscious and I was so, so happy when I got my real fake boob. It was amazing how much impact feeling like I looked like I did before had on my mental state. That lasted only a couple of weeks until, just days after my second chemo treatment, the majority of my hair fell out one morning in the shower. I quite literally went into the shower with a full head of short hair (I’d had it cut in preparation), and came out looking like a mutant peach with patches of fuzz mixed with sections of completely bald noggin. My husband then set about using his Bic razor to even things up. I’m pretty sure our marriage vows did not include any mention of shaving your wife’s partially bald head, but I guess things like that fall into the general categories of love and honour.

I had mixed feelings about being bald. On the upside, it is really freeing not to have to wash or comb or dry or colour or cut your hair, and the feeling of showering when you have a bald head is absolutely amazing – I would often stand under the flow in a blissful trance until the hot water ran out. On the downside, I certainly did not have the confidence to get about bald in public, so my choices were pretty limited – wigs, scarves or hats. In the very early days I tried a couple of wigs, but the combination of my very large head and the fact that it was Queensland in summer, meant that after about 45 seconds of wig-wearing I looked like a sweaty, itchy lady with bad Lego hair.

 

This fan ain’t for decoration.

So I moved on to scarves. I love scarves as a fashion accessory, but prefer them wrapped around my neck in winter, and not my head in summer. I bought about a dozen in a vain (and I mean that both ways) attempt to find something that didn’t make me look like a middle-aged female pirate. I soon found out that even if my scarf didn’t have a skull and cross-bone pattern and I wasn’t wearing a single hoop earring and an eye patch, being an obviously bald woman wearing a scarf brought me lots of unwanted attention in public. The first time I ventured out after I’d lost my hair was to a local shopping centre. I immediately noticed people staring as I walked past them, and there were several people who did the classic double-take, as well as a few who actually stopped in their tracks to watch me as I made my way through Target. I felt incredibly uncomfortable, but when I got home my husband reassured me that people wouldn’t be so rude as to stare and I was just being overly sensitive. However the next time I was in public and he was with me, he realised that it was not my imagination and in fact people were actually as rude as I had first thought.

When you’re dealing with cancer, you’re faced with many uncomfortable situations, such as conversations with doctors about what chance you have (expressed as a percentage) of still being alive in five years. But those situations and the way you deal with the outcomes of them are thankfully done in private, whereas losing your hair makes your cancer conspicuous to the world, which apparently causes some people turn into thoughtless shopping centre rubber-neckers and others to feel the need to ask the most impertinent of personal questions. While I was bald I was asked by a check-out operator what sort of cancer I have, by another customer in a bank if I’d had a mastectomy or just a lumpectomy, and by someone who I’d met two minutes earlier outside our kids’ classroom if I was planning to have more children once I got over the cancer.

The bald head and thinning eyebrows seemed to cause all social norms to go out the window, and honestly I would have just hidden away at home for the duration if I’d had any choice in the matter. But we still needed food to eat and Christmas and birthday presents had to be bought, and my boy still needed to be taken to school every day, so I just learned to steel myself with a few deep breaths and push through the world pretending not to notice or care about what others were thinking or saying. It pains me to think about people who live every day with visible difference and the rudeness that they are subjected to as a matter of course.

Today, I have a lovely crop of hair and eyebrows that could actually do with a wax. People don’t look twice at me in shopping centres and I am just as nondescript and zombie-like as every other poor person in a long lunch-time bank queue. I look like a stock standard middle-aged woman, and with every passing day I feel a tiny little bit less like I have the word cancer stamped all over my psyche. All I’m waiting for now is an invitation to a fancy dress party because I have a shitload of options in my wardrobe … as long as the theme is ‘adventure on the high seas’."

 

New touch. Life after skin hunger.

I've been experiencing new touch. I realise I'm far from experiencing skin hunger now. I can't even remember what it's like to yearn for touch after doing so for years. It's like this frequent touch has erased all loneliness.

He holds me so tight I might burst. My love is so willing and eager to touch me - day and night. Sometimes I've pushed him away, because I'm not in the mood - and then I feel guilty because of just how unreserved he is, and remember how much I wanted this touch.

My boy has been touching my face. He makes my ear tickle - I only know what it feels like to have skin removed from outside and in my ear. That's clinical touch, never pleasurable touch. (Except for the surgical removal of skin - that feels amazing! I joked to him that having my ears cleaned out at the hospital feels so good that we might have to introduce a surgical ear vacuum into the bedroom.)

He feels the contrast of an oily face in the day and a dry rough and flaky face in the morning. There are a few hours in the evening when my face is at an equilibrium - relaxed enough to be paler and supple, and the cream is soaked in.He caresses my face with the same tenderness - no matter how my skin feels or looks. He says I'm most beautiful in the morning before a shower. I still don't believe him.

If only we could see ourselves as our partners do, hey?

-

Abu Dhabi airport was a caring experience. I had a brief stop there on my flight home from London.

After going through security upon arrival, I was ushered silently to a seating area where I was gestured to wait. I was so worried, not sure why I placed in a holding area, and really wanted to have a shower in the two hour stop between flights. Finally a senior security officer called the doctor for me, to see if I was ok after the flight from London. I told him I didn't need one and that I'm always red. He thanked me and smiled and let me go. While it was initially a little scary and I envisaged all sorts of tabloid border security TV show type situations happening to me.

I had a shower. The lovely cleaner attending the bathroom said she had a 12 hour shift ahead of her. She works 12 hour days in that toilet block with only one day off a month. We chatted and she told me she was from Uganda, working at the airport and thinks of her family back home every minute of the day. She asked me if I was going to dry my hair, and then ushered me to sit on her chair under the hand dryer. She then - without hesitation - dried my hair with her hands, so gently and thoroughly. What a wonderful woman. I hope she gets home to see her family soon.

It was so nice. I know that I must seem to always be banging on about how people perceive my skin/appearance, but when something like this happens - when a stranger touches me with no hesitation or questions or fear, it is amazing.

-

I've had two manicures while on holiday. One in Earls Court - just because I wanted to rest and be pampered, and one in Melbourne. While a couple of questions were asked - "is that eczema?" - the makeup artists provided the same level of service to me as they did to the other clients. That sounds like a silly, paranoid statement I know, but hesitation and a low quality haircut and interaction has been my experience at hairdressers.

I never wanted anyone else to touch my hands. While my hands and nails are beautifully shaped like my mother's, and quite soft and not very lizardy, I never want people to be put off by loose skin or the oiliness. I don't want someone to think that I'm contagious, and I don't know how to tell them that I'm not if there's a language barrier.

These two manicures were lovely - relaxing and pampering - and my nails looked great. I feel like I've gotten over my fear of rejection and recoiling of hand holding by nail technicians. And now I'm addicted to manicures - off to have another very soon! I might make it a regular thing. I've also had some consultations with hairdressers and makeup artists at a wedding fair - and they were so amazing! I said to Cheryl that I was so happy with the consultation that I felt 'normal'. Normal you know!

-

Through reading others' experiences about Ichthyosis and also writing my own, I've delved into some difficult times of my past. I've been thinking about how my oily cream has been an inconvenience to some people in my life. I've constantly felt guilty about getting my cream on other people when hugging them and touching them. This was probably because of how people have reacted to it - people close to me even - complaining about my cream staining their clothes and cleaning up immediately after I have touched something in their home. This really hurt. I'm not sure whether people realise the impact of this 'inconvenience' on them.

While I know that getting things oily is something that is just a part of me, the reaction and complaints from others is the reason I feel guilty today. It's the reason I'm hesitant about giving hugs. I always rub my cream off Adam's face, and brush my skin from his clothes. He tells me never to apologise about me getting my cream on him, because that's the way it is. But I will always remember how those around me used to react and feel annoyed about my cream, so I will always apologise.

-

I've realised that while I'm not a fan of the term 'normal' and feel proud confident in my own skin (and every piece I leave behind), I still have to build my confidence when it comes to touch. I'm so glad Adam has taken my hand and helped me overcome my own reservations of being touched.

 

Sore.

While I maintain that I don't suffer, there are times when the pain of my Ichthyosis is unbearable. The pain seems to drill down the depth of my skin - from the epidermis on my chubby calves down to the very core of my hyperdermis. It's burning and throbbing and hurts to touch.

Right now my legs are pounding and weepy, and have bloody spots on them from where the sheets moved against them in the night. This is hospital grade sore, though I'm hanging out for a miracle - I hope I don't have to go to hospital. Dermatologists aren't at hospital on the weekend, so I will need to wait til Monday anyway. I hope a few salt baths and the warmth of a quilt heals me.

I haven't really felt right in my skin since I returned from overseas almost two months ago. There's been some throbbing, my stocking sticking to a weepy part of my leg, tearing off the fragile skin and making me wince. It's been scraping under my boots and waking up tired. I am onto my third dose of antibiotics and my patience is wearing thin. I put it down to some stress and worry - mental health definitely plays a big part in physical health.

I was talking to my day job manager about self accountability and the perception of being sick. This is something I struggle with a lot. If I was well enough to go to a protest on Monday, how can I be too sore to do a full day at work? I don't think I will ever stop worrying about that, no matter how understanding those around me are. Sometimes I wish that I had more of a lasseiz faire attitude and didn't put so much pressure on myself to do everything well.

Today I wanted to do some writing and planning. All I've done is doze while listening to podcasts. Tomorrow I see Bob Evans at the National Gallery of Victoria. That's about all I can manage. There are times when productivity equals resting.

Skin hey? It's complex.

How's your weekend?

 

Appearance diversity: Turia Pitt tells her story.

Last week Australian Women's Weekly released their July issue featuring Turia Pitt, burns survivor, on the cover. I wrote about that here, and it was republished on Daily Life.

Since then, Turia and I have been in touch on Twitter and she agreed to share her story here as part of the Appearance Diversity series. I know how busy she is with surgery, speaking, charity and media commitments, so I'm so appreciative of her for writing this guest post.

She's an amazing woman - successful, confident and physically fit. She told me that the excercise she does now doesn't hurt her any more than it did before her accident. She also has a message for young people struggling with their facial difference:

"If you don’t have a problem with it, they won’t."

Turia works tirelessly raising money and awareness for Interplast - a charity that provides reconstructive surgery to underprivileged people. She recently climbed the Great Wall of China, and she's written a little about that here.

Meet Turia Pitt.

"At the start, my self esteem was significantly affected. Before my accident I used to walk around with confidence and a lot of self-belief. All of that was ripped away from me when I was trapped in a grass fire during the 2011 Kimberly Ultra Marathon – receiving burns to 65% of my total body surface area. It’s taken years (this September will mark the third anniversary) but I’m finally at the point where I was before the fire.

My life has changed dramatically. Before the fire my partner and I lived up north and I was an engineer working on the mines. Now we live on the South Coast and I am a motivational speaker. I’ve lost independence, most of my fingers and my appearance is completely altered. Some things have stayed constant though: my wonderful partner, my beautiful family and my incredible mates.

Beauty is: standing up straight, having confidence, looking people in the eye and having the ability to look in the mirror and think, “Yep, I look damn fine today”.

It’s an absolute honour to be asked to be the cover girl for Australia’s highest circulating magazine. For that, I’m incredibly grateful.

Interplast provides free reconstructive surgery to people in developing countries. So they could perform surgery on people with cleft palate, women who are victims of an acid attack or even other burn survivors. My plastic surgeon also volunteers for Interplast on an annual basis, so you can understand why I feel so close to the cause!

I’ve just returned from trekking the Great Wall of China with a group of 20 extraordinary women. Our group raised close to $200,000 which is a phenomenal effort for this inaugural event. Next year we will be taking on the Inca Trek and we hope to raise even more for this worthy organisation.

While I was in hospital I couldn’t do anything for myself. I couldn’t feed myself, I couldn’t brush my hair and I couldn’t even take myself to the bathroom. Depression sunk in because I was an ultra-athlete and now I couldn’t even walk a single step. I realised that to get through this I would have to readjust my goals – I would have to be content with achieving the little things. Taking a single step. Climbing a stair. Raising my arms."

Turia signed off her email to me with such an appropriate quote:

“When you work on the little things big things happen”

― Rodger Halston

Visit Turia Pitt's website.

Follow her on Instagram.