If 10 year old me could see my life in 2016.

 

If we measure life's worth by social media reactions, which we shouldn't but we do, 10 year old me feels more loved, valued and visible in the last few days of 2016 than I did when that photo was taken in 1992. I snapped a photo of the 24 year old picture in a frame on my parents' very vintage hifi speaker yesterday. I cropped it and uploaded it to Instagram and Facebook, not foreseeing the impact the response would have on me. I didn't plan to think about it so deeply. As I write this, the picture has received more than 200 likes on each platform, and dozens of compliments. If 10 year old me could see those now, I think life would have been a little easier. At least 10 year old me could see there are people out there who think I'm awesome, just from a photo alone. 

10 year old me didn't know that in 2016 I would be married, kicking career goals and very happy with life. I wish I could 3D print that photo of her in the green, white and grey uniform, press her from the paper and take her by the hand and walk her through everything that happened in 2016. Show her she's surrounded by positive, supportive, smart and accomplished people. Reassure her that what sets her apart will be the very thing that she's using for social good - and an income. See her sigh and smile with wonder, telling her "who would have thought it would be this amazing?!"

On social media likes terms, 10 year old me had no idea that her school photo would be as popular as her wedding photos from 2016. She'd have no idea how hard it was to reduce a list of 100 or more loved ones down to an affordable number of 55 guests, and that her favourite singer would sing at the wedding. 10 year old me couldn't even consider the idea she'd be married to a nice man who believes her skin that falls on him and in his pockets is love, not something disgusting to be feared and brushed away. He loves me and all that I leave behind.

 

Of course, 2016 hasn't been all good - there was some really awful times including some more blatant discrimination, betrayal, conflict, difficult decisions, unpleasant situations, inappropriate behaviour and aggression from someone with Ichthyosis, a horrific wisdom tooth removal that's resulted in a formal complaint to the dental board, the death of several friends and constant soreness. I'm even sore today, dammit. All through the hard times, I've had dear friends checking in and helping me through. 

But there were great moments! I got married! Went on a European honeymoon for four weeks. Spoke at an event before Julia Gillard spoke. Wrote for the ABC  And SBS!  Wrote for News Limited! And Daily Life too! Won an award. Won a scholarship to a health and social media conference. Was featured in an art exhibition. Did lots of media. Went on a few podcasts including Osher Gunsberg's podcast. Started my own podcast  Made some great new friends. Had a constant and comfortable level of money in the bank. Left my safe full time job and started a new career - a part time day job. I also write and speak mostly about what it's like to look different. I've been thinking and writing real critically about disability issues that affect not just me but my friends and colleagues. I met a few more friends with Ichthyosis - in Australia and overseas. Continued to speak up about ableist and discriminatory behaviour, and become less apologetic in doing so. Adam and I are talking about buying a house in 2017. 2016 was the year I grew up. I wish 10 year old me was here to experience the joys and sadness and hard work and fun. 

I look at the photo of that little girl. 10 year old me. Unruly hair. Perfect teeth that I had not yet grown into. A beautiful smile. A red, glistening face - the thick white smears of Sorbolene cream must have recently been replaced with the paraffin-based ointment I still use today. Big skin flakes stuck to my jumper (didn't the photographer think to tell me to brush it off?!). 

I had perfect handwriting and a creative mind. I'd sew clothes for my Barbies on my days off school, and I remember at the end of that year, I received a craft award, which was a book about how to make miniatures for a doll house. I read TV Hits magazine, alphabetising all the song lyrics, and I was a huge fan of the Australian hair band Southern Sons, after my very cool babysitter and her boyfriend introduced me to them via Rage videoclips the summer before. That summer, Mum would buy me an extra large sized tshirt, featuring Southern Sons, as suggested by her then twenty something colleague. It came down to my ankles. I have never worn it out of the house. Sometimes I wear it to bed as an adult. It's down to my knees now. I was still at the age of playing with dolls yet wondering when my period would come (it came in August 1994, when I was 12, and that marked the start of me shutting the bathroom door), and listening to the girls in my class talk about the boys they wanted to get with, knowing that would probably never happen to me. 

I was so self conscious. I just wanted to be normal, whatever that is. Normal in a white bread small town was white skin, long hair and a short pleated netball skirt. It was sport on the weekends - actually enjoying sport. It was friendships and parents who were white too. It was church and farming and liking the outdoors. It was splashing in the pool in the summer, enjoying the heat. Normal wasn't me. 

I didn't identify with having a disability in 1992. (That was only recently.) Ichthyosis was just a skin condition, and the girl in my class who had cerebral palsy was disabled, I certainly wasn't!, I thought with defiance. But I wanted to be a dermatologist - until I found out it would take me until 2017 to qualify as a dermatologist, and was told by my then dermatologist that I would probably be mistaken for a patient in my own consult room too many times. Then I wanted to be a writer. 

10 year old me was lonely. I sat on my own most lunchtimes. I read a lot of books. When the girls in my class braided each other's hair, they avoided mine. They wouldn't  sit where I'd been because of fear of contagion - even though I'd been at the school for five years and in that time, no one had caught Ichthyosis. Duh. I preferred to be in hospital because the patients and nurses knew what it was like to be different and sick, and they liked me more there. A year or so before that photo was taken, I told my Mum that didn't want to live anymore, and I got help from a psychiatrist, but I don't remember any of that time of my life.

 

A man (then boy, of course) whom I went to school with a few years after the 10 year old me photo was taken recently told me he was one of the only boys in my class who would hold my hands during dance class in PE. The other boys covered their sweaty hands and sniggered to their friends when they had to dance with me. They might catch something. But not him. He braved my rough, oily red hands. He feels good about being one of the few to actually hold my hand. He said the other boys gave him shit for it. My heart sank for two reasons - thinking back to the time where people were too immature and repulsed to hold my hand, and for my now friend telling me he took a hit for the boys club. Such a great guy for telling me this. 

As Clem a Ford writes in Fight Like A Girl: 

"We have to resist the urge to respond to basic decency by treating it as if it's some kind of enormously magnanimous gesture. It isn't. There shouldn't be anything astonishing about a man who doesn't degrade women, hurt them or treat them as somehow less than him." 

I was actually revolted at this former classmate's admission of decency when he told me, and my revulsion was confirmed when I heard Clem's words. I wish I had the guts to say them to the people I went to school with at the time. Thanks Clem for making me realise that just because someone says they took one for the team, they're not a good guy, they are still contributing to the bullying.  

There are lots of photos of me at various ages scattered around my family home - mostly milestones like school and university graduations and meeting Darren Hayes. In my early years I wouldn't smile for the camera, I'd just screw my face up because I didn't think I was worthy of having my photo taken when my face was different to most people's anyway. There are a few school photos of me with my sparse hair tied back in different coloured scrunchies and ribbons through the 90s. What a relief/faux pas it was when I found mousse that made my hair curly (yet so crunchy it wasn't nice to touch). I don't have many social photos of me in my teenage years - perhaps I was too self conscious and friendless to take any? Maybe it is just because we didn't yet have digital cameras and social media? 

I have seen that photo of 10 year old me countless times. I hadn't really taken notice of it until this week. When I looked closely, I saw a beauty that I hadn't noticed prior. Maybe that was the year I started taking care of my own skin. But I think it's because I see myself now, as a 35 year old woman, in that 10 year old face. A smile, and a twinkle in my eye. Big hair, don't care. There was so much potential for me - but I didn't realise then

Mum always told me to believe in myself and not to worry about what others thought of me. I tried when I was 10. But being proud of myself, and confident, especially when I was made to believe I looked hideous because of how people my age spoke to and shunned me, was seen as being up myself. No one wanted to be that, or liked that. It's so much easier to display that confidence now. No fucks given. 

When I was 10, I needed to meet others with Ichthyosis, like I'm doing now. I needed mentors in my life. I needed to know that life as an adult would be ok. But the few people with Ichthyosis that I met spent their lives looking for cures and that made them really unwell. I knew when I was 10 that I didn't want to be fixed, even though so many said that  I could only succeed if I didn't have red, scaly skin. 

It's 24 years since that photo was taken. I remember the isolation and being told I could do anything as long as I chopped my skin off like it was yesterday. In my 375th argument on the Internet this year, when someone defended and dismissed bullying at my high school  and of course I had something to say, a stranger told me they hope I put my sad school days behind me. Of course I've achieved and found so much happiness and love since then, but I remember the hateful words and the exclusion. 

10 year old me wondered when someone would say I was beautiful or smart or a good writer, instead of calling me "redskin" or dragging their feet because they had to sit with me at lunchtime. I wondered when someone would come to my house on a Saturday to play Sylvaniam Families or My Little Ponies. I wondered when teachers would realise that sitting outside in the heat was just as bad for me as playing sport in the heat, and could I just go to the library and read, please? I wondered for so long when someone would hold my hand, let me touch them, ask me to braid their hair. 

As I began to write this piece in bed this morning, Adam, my husband (my husband!) reached for my hand, sleepy and naked next to me. I brushed it away, briskly. "I'm trying to write", I told him. "I'm trying to love you", he replied, smiling. And then I took his hand and let him kiss mine. 10 year old me would be giggling at the thought of the love she'd have in 2016.

Cheers to 2016, and here's to 2017 - I hope you have a great New Year. Thank you for reading my writing in 2016 - you are so wonderful.

❤️

 

That's 35 year old me doing just what 10 year old me couldn't get away doing - lying on a massive toy shaggy dog in an art gallery a few days ago. I could be myself around a school friend as she took the photo, and that felt good.

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(I've been reading Lindy West's and Clem Ford's memoirs this holiday. They are such great writers and have made me think and laugh. This post is inspired by them - and has given me thought for writing my own memoir soon. Hold me.) 

On guard. I'm aware of the need to manage other people's reactions towards me.

 

The cleaner was due today. Last time they came, they were scared of my face and left. 

There is usually a different cleaner each time. I know this now I work from home, and also because of the varying quality of the cleaning. 

Part of me wanted to stay home, so I could greet them, smiling in a friendly way, and monitor their reaction. 

Most of me wanted not to be home to avoid being on alert, avoid the explaining of why I look the way I do and trying to make a stranger feel comfortable about my appearance. 

I do just want to get on with my day - do a good job of the work I'm required to for my day job. But I know I'm aware of the need to manage other people's reactions towards me. 

This is tiring.

I acknowledge that of course this doesn't happen all the time, and the majority of interactions are positive. 

But when something like the cleaner being afraid of my face and leaving the job happens, or when I'm abused by a taxi driver, or even when I'm surrounded by high pitched children demanding to know what's wrong with me  I can be on guard. I notice sniggers and glances from my peripheral vision. I see the gaping mouths and hear the sudden silence as I enter their space.

I jot down the cab numbers before I've put my seatbelt on, and I put a smile on so as to not scare the children. 

These are the things I've become accustomed to doing because I look different. 

I try to be polite at all times. But I cannot guarantee that I will respond to each microaggression (or outright discrimination) in a chirpy, educative way. But that's often expected of me. Often by people who experience Ichthyosis - as a carer, and sometimes a patient.

"You should have welcomed this opportunity to educate," I read. It's bitterness, they tell me. There's also the idea that I'm not comfortable with my appearance if I see stares and comments and fear as negative experiences. (Wrong.) 

There is the peanut gallery of people who look on the bright side. Usually people who have never been judged by their appearance alone. "They probably didn't mean it." "It's natural to be curious." Even the "Maybe you're taking things too personally?"

And then there's always my own high achieving self telling me that the way I respond will shape a stranger's experience of dealing with a disabled person or someone with a facial difference. I might be the person to make them never want to interact with someone like me again. It's a huge responsibility to get it right. Amd I don't want to be seen to be scary and difficult. That angry red woman. Because I'm not.

 

The cleaner never came today. I will be on guard another day. And I wonder if something came up, or word has got around the agency to avoid the angry red woman who cried discrimation. 

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My face scared my cleaner away today

This is my face up close. It's red, shiny and a bit lopsided because of a dodgy lymph node that flares up because of my inflammation. It's usually very smiley. Sometimes my hair is out of control, and sometimes there's a few bits of wayward skin hanging off my face and hair. This is who I am. 

 

Earlier this year my face scared the post office worker. Today it scared the cleaner. So much so, she ran away without completing the job. 

It's exhausting having a face that can scare people. Even more exhausting worrying I'm seeming like a victim as I recall events like these. 

I work from home now. Every second Monday a cleaner comes. I usually leave the house to go to the library when they come, but today I needed to stay home until I finished something. 

I greeted the cleaner, saying hello. She jumped, visibly shocked at my face. I let that one go. 

A few minutes later I went out again to tell her to let me know when she needs to vacuum the room I'm in, and I'll move for her. I spoke before I was in the room. As she turned around to look at me, she jumped again. 

I told her "please don't be scared of my face", and said this is just how I look. I returned to the other room. 

20 minutes later, I finished the task at hand, and realised I couldn't hear or smell any cleaning being done. I looked through the house. It's not very big. She wasn't here.

She just left. Didn't lock the door. Didn't let me know. She left because she was scared of how I looked. 

After a couple of calls and texts, I eventually spoke to the cleaning agency manager - angry and upset. The manager told me the cleaner did not know how to react to my face so she left. She was scared of my face and so she left. 

The manager tried to placate me, saying this is a misunderstanding. She said this wasn't cruel or unprofessional, nor is this discriminatory. 

I told her that I'm quite familiar with people's reactions towards me, and I don't need a service provider reacting like this in my own home. She apologised and she will come to clean my unit herself. 

About 15 minutes after the phone call, the cleaning agency manager came and she was extremely apologetic. And empathetic. She did say it's understandable because the cleaner had not encountered someone like me before, and that it's not often I'm home. I said it is not justifiable, and as someone on the receiving end of curiosity and fear, it's exhausting to deal with stuff like this. 

I had specifically chosen this cleaning agency because they gave me a chance to be up front about my skin, and I didn't have to explain it to each cleaner.. I am also really nervous about my skin, so I didn't want to freak a cleaner out about the skin on the floor.  

I asked the cleaning agency manager if I can deliver training to her staff, so they might understand the firsthand impact of such ignorance and unprofessionalism. I said that although the cleaning agent has already spoken to this cleaner, it might help if the cleaners learn the impact of this behaviour from a person who's been on the receiving end of it. 

As I got in the car to go to library, the cleaner was outside my block of units. She was there to give back my keys, which the cleaning agency manager now had. But why was the cleaner still there? I asked if she was ok, you know, just hanging around. No apology. She just looked away.

There might have been more to the story, as a friend asked on my Facebook today. But cultural background and working visas should not have played into whether someone is too scared to do their job they're getting paid for. Would it be acceptable for a waitress not to serve me because they were scared? Or a doctor not to treat me, because of this cultural perceptions of people with facial differences? No.

This is what I envisage will happen. The cleaner will get a talking to. She will giggle to her friends about seeing me. She won't be rostered on to work with someone "different" again. And her small-mindedness and reluctance to see anyone who looks different as human will continue.

Some people who don't get it will say "it's understandable that people are scared" or "of course they'll be startled if they haven't seen someone like you before..." But they will never say "this must be tiring." There's an expectation to be polite, to educate, to take it because my face is unexpected. But I'm angry. And upset.

These are the microaggressions I face - about my face - on a regular basis. It is not up to me to make someone else comfortable about the way I look.

Here's a simple guide for encountering someone who looks different: 

• Say hello. Smile at us. 
• Apologise if you showed you are visibly startled. 
• If we provide you an explanation like "I was born like this", accept it and get on with what you're doing. 
• Ask polite questions, only if you feel it will add to your day. Preface them with "I hope you don't mind me asking.."
• Don't just leave a job we've hired you for because you're scared of our faces. 

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This is how two different types of Ichthyosis look, feel and are treated.

 

I got to hang out with Kyri just before I went overseas. We were in Sydney for an award ceremony . It was so much fun, and we realised how much we have in common. We could not stop talking. 

Kyri and I both have Ichthyosis - but different types. It seemed that our commonalities were more social than medical, though. We thought it would be fun to do a comparison blog post - to show how vastly different two types of Ichthyosis are, and also to show that one treatment does not work for all. Enjoy! 

Kyri has Lamellar Ichthyosis.

I have Netherton's Syndrome. 

Her skin is white. 

My skin is red.

Her skin is more resilient than mine. She tells me "my feet are very thick and tough and I can walk barefoot easily, but my skin can be fragile elsewhere."

My skin is fragile, especially on the bottoms of my legs. It's susceptible to infection. 

Her ichthyosis is most obvious on her back and torso. 

My ichthyosis is most obvious on my face - but most painful on my legs and arms.

I use medically prescribed paraffin to moisturise, all over my body twice a day, and more on my face as needed.

Kyri uses Lush Dream Cream on her body and Lush Celestial Cream on her face, and lots of lip balm because her lips crack.

 

Her body has a big skin shed regularly and this makes her feel better. "My skin sheds constantly, and I have four big sheds a year as the seasons change which make me feel tired and a bit cranky temporarily then better after. 

When my body has a big peel (usually about once every 18 months, but now more frequently), it's so painful.

Kyri takes accutane which is really helping her. She says accutane is wonderful because it makes life a lot less painful. She says "Accutane reduces the thickness of the scales a lot and stops the skin drying out so quickly, but makes my skin much more fragile (grazes become cuts) and susceptible to sunburn."

I'm not on any regular drugs. I take antibiotics and painkillers occasionally. 

We both feel pain. 

I am susceptible to infections.

Kyri used to get infections more often than she does now, again accutane - pre accutane my skin would split open along the scale lines regularly. 

 

She doesn't feel the cold as much as me.

Kyri's feet soles are thick with skin. 

My feet aren't as thick with skin. 

Kyri has very long, thick hair on her head. She also has body hair. 

Mine doesn't grow long, is thin and slow at growing. I have no body hair. 

My scalp has obvious scales.

Kyri's scalp doesn't have many scales. She told me "my scales in my scalp were much more common pre-accutane, by the way. I'd shed everywhere a lot more, too."

She told me she doesn't shower frequently, because water makes her skin too sore. "My skin dries out and shrinks together causing splits, and it's also much much more itchy for about 24 hours", she says.

Meanwhile, in the time we spent together (3.30 pm Wednesday -

12.30 pm Thursday, I'd had two showers. My skin body would feel so uncomfortable without a shower.

Kyri woke up with her face looking like it did before she went to sleep. 

I woke up with my face scaly and unable to move it.

 

Kyri'a hair is so long and silky. "My hair also grows very fast. I have less body hair than most women, but I have more than you", Kyri says.

My hair is short, and breaks off. It doesn't grow much. I have almost no body hair. 

I find it it more comfortable to wear tights and long sleeves every day. This keeps me warm and protected from the elements and scratches. 

Kyri can't cover up as much as me or she would overheat. She is fine wearing short sleeves. 

We both get tired easily - Kyri probably more so than me. 

Kyri sweats a little.

I don't sweat. 

I don't have eyelashes and only sparse eyebrows. 

Kyri has both eyelashes and eyebrows! So envious! 

We are both shorter than average. 

We have both felt self conscious about our skin and have covered up to avoid embarrassment. We have become less self conscious as we've aged. 

 

 

We are both very outgoing, and we talk and laugh a lot. We both love fashion and taking selfies. 

Our treatments vary. What suits me doesn't work for Kyri. When you suggest a product that you love, don't assume it will work for everyone with ichthyosis. See my medical shaming post for more on that. 

We don't look the same but we both have Ichthyosis. 

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Seven books to help kids with Ichthyosis (and help kids learn about Ichthyosis).

 

Last week, a mum in one of the Ichthyosis groups I belong to asked about books to teach kids about Ichthyosis (and visible difference). The thread was soon filled with suggestions - and I asked if I could collate them and others I've found useful into one blog post. They said yes, of course. It's a great community.

I've put together this guide to books suitable for young children, older children and parents, and also some school resources for parents and teachers. They are relevant for kids and adults with all sorts of visible differences too. Among them, three of them have been written by parents or grandparents of children with Ichthyosis, and four are by Australian authors. Perfect! I've read them all!

If you are parents of children with or without visible differences, I'd love it if you could take some time to read this, to help teach your kids about what it's like to look different. Reading just one of these books to them might just make the difference to a little one who is excluded because of the way they look. 

I hope you find these useful. 

(There are no affiliate links here, and ice tried to source Australian retailers to support local. A quick Google of each will take you to international retailers.)

Books for younger kids:

Maddy and Ma - Barbara Jarvis

 

Maddy and Ma, by Perth-based Barbara Jarvis, is based on a true story - the bond between a little girl and her brother (who both have Ichthyosis) and her grandmother. 

Barbara told me: 

"Maddy and Toby have learnt there are certain things they can’t do because of their skin condition but their family have always focussed on what they can do rather than what they can’t do. I think it’s so important that we instil in our children a sense of self-worth and a positive approach to life, whatever their situation.

Maddy and Toby have grown up used to regular visits to the “skin doctors” and daily “creaming” to ease their skin’s dryness and itchiness because they “have a skin condition”. I once saw a TV documentary on dolphins and learnt about the rare pink dolphin. It struck me that Maddy is like that rare and very special pink dolphin. She loved the analogy."

Buy Maddy and Ma here. (Proceeds go to the Perth Children's Hospital Foundation.) 

True Blue Hand - Ainsley Kyder-Gould

 

Written by my friend Ainsley Kyder-Gould, whose young daughter has Ichthyosis, True Blue Hand helps to start a conversation about appearance diversity. 

Ainsley wrote about the book on my blog earlier this year.   

Ainsley and her beautiful family live in Melbourne and I love catching up with them.

The website's blurb: 

"True Blue Hand is a sweet tale of a little girl who happened to be born with a unique blue hand. Through a children’s conversation at the park the story promotes a positive example of how to be curiously kind when dealing with uniqueness."

Download the free eBook here.

Elmer - David McKee

 

 

I was recommended Elmer by Random House, who provided books for the kids at the Australian Ichthyosis Meet in 2015. I used some of the crowd funding to ensure all the little ones had this book. Some mums have told me the book has really helped their kids. 

From the Elmer website: 

"The stories are suitable for early exploration of the themes and issues relating to the concept of diversity, as Elmer discovers that when he tries to change his appearance in order to 'blend in' with the other elephants, they no longer recognise him, or accept him as one of their own. This makes Elmer sad, and he experiences how it feels to be treated like an outcast, after being ostracised by his old friends. It's only when it begins to rain, and the grey paint that Elmer has covered himself with starts to disappear, that Elmer's 'true colours' are revealed, much to the surprise and delight of his friends, who preferred his multicoloured and fun loving persona. Following their happy reunion, the elephants reassure Elmer that they love him because of his differences, and not in spite of them, and they celebrate by painting themselves in multi-coloured paint, in recognition of Elmer's unique appearance and personality."

Buy Elmer here.

Books for older kids 

Ugly - Robert Hoge

 

Ugly, by Robert Hoge (from Brisbane), is an adaptation of his 2013 memoir - especially for young readers. I did an interview with Robert here.

From Booktopia: 

"Robert Hoge was born with a tumour in the middle of his face, and legs that weren't much use. There wasn't another baby like him in the whole of Australia, let alone Brisbane. But the rest of his life wasn't so unusual: he had a mum and a dad, brothers and sisters, friends at school and in his street. He had childhood scrapes and days at the beach; fights with his family and trouble with his teachers. 

He had doctors, too: lots of doctors who, when he was still very young, removed that tumour from his face and operated on his legs, then stitched him back together. He still looked different, though. He still looked ... ugly. 

Ugly is the true story of how an extraordinary boy grew up to have an ordinary life, and how that became his greatest achievement of all."

Buy Ugly here.

Wonder - RJ Palacio

 

Wonder is written by RJ Palacio and I've devoured it in a day. 

Wonder is a fictional children's book about August (Auggie) Pullman, a young boy born with a facial difference. He's got a genetic condition which affects his facial structure and his hearing. RJ Palacio was inspired to write this book after an encounter she had with her sons and a little girl with a visible difference. As a reader with a visible difference, I will say that it's very well researched. It could well be an account from an actual person.

On the first page, Auggie says:

"I won't describe what I look like. Whatever you're thinking is probably worse."

We never know what Auggie looks like but we get an idea from how he's treated.

Wonder documents his first year in mainstream school - the challenges of making new friends and fitting in. The descriptions of being a primary school student who looks different brought back many memories for me - it's interesting reading it from a young character's perspective when I've experienced similar. Auggie is teased, excluded (some of the other students invented a game called The Plague, where they believe if they touch Auggie they'll catch something), and physically bullied. He has a few genuine close friends but it takes a while to feel accepted.

My review is here.

This has been one one of my favourite books of all time. Again, I gave all of the older children and adults with Ichthyosis a copy at last year's meet. One of the tweens who attended told me she treasures the book. 

Buy Wonder here.

Ride High Pineapple - Jenny Woolsey

 

A blog reader turned friend wrote to me to tell me she has penned a booked called Ride High Pineapple. Jenny Woolsey, also from Queensland, has Crouzon syndrome, and her daughter does too - so she has firsthand knowledge of what it's like to live with a visible difference. 

It's the story of Issy, who has a facial difference, getting bullied and then developing a strong sense of resilience through finding a hobby and having an adult mentor to show Issy her worth . It's a great book for young teens. 

I enjoyed this book and wish I had it when I was a teen. 

Buy Ride High Pineapple here.

Books for parents and teachers 

A Different Beautiful - Courtney Weatlake

 

Written by Courtney Westlake  mum of Brenna, who has Ichthyosis, A Different Beautiful is a journey of raising a child with Ichthyosis. I found it to focus on religion more than Ichthyosis, but it has some good messages about how to talk to children about visible difference. 

This passage was my favourite of the book. 

"More times than I can count, I have been thrilled when a family has approached us who has recognized us from social media, wanting to say hello… only to be dismayed when that family’s children stand back and furrow their brows at Brenna’s appearance. It is clear that although the mother has apparently enjoyed reading about our daughter and seeing our family’s photos online, she never took the time to share with her children. Often mothers will share with me how Brenna’s story has helped changed their perspective regarding special-needs parenting and differences, but then, it is obvious by the confused reactions of their kids that they haven’t yet thought to pass those lessons on to their children. If we allow stories and experiences to inspire us for a moment, or even to begin changing our hearts, but we don’t take the time to show our children and teach our children about these new perspectives, we are missing the point. If it starts and stops with us, we will never see real and lasting change in the hearts of those around us and in the way our children see themselves and treat others."

These resources I've collared are so needed because, as parents tell me, their children with Ichthyosis are still being teased and excluded at school. It might well be because parents aren't talking to their kids about appearance diversity. 

Buy A Different Beautiful here.

School resources 

The Ichthyosis support group in the UK has an excellent pre-school and primary school resource - for teachers and students. Download that here.  The Ichthyosis Support Group also has a story booklet that you can get here.

Changing Faces school resources  features information for teachers and students at all stages of the education system. View those resources here. 

It also features a kit on teaching Wonder. 

Of course, I have also written a lot of information about coping with Ichthyosis on this blog - including:

• a letter to little me  
• dear parents of kids with rare diseases, and 
• how to prepare children for meeting someone with a visible difference. 

Are there any more resources you recommend?

Has this post helped you in some way? Perhaps you'd like to buy me a drink for my efforts in writing this blog. 

Ichthyosis and medical shaming.

I've seen body shaming, food shaming and now medical shaming - where people are made to feel guilty or fearful for their medical treatment choices. It is also where people are recommended non prescribed treatments from the unqualified. It fits into the category of unsolicited advice, doesn’t it? The most amusing is when people tell me petroleum based products will kill me - while they’re smoking a cigarette.

I use a mix of paraffin - which are petroleum products. I try to avoid harsh chemicals like sodium laurel sulphate where I can - not because of poison but because they feel better on my skin and hair. And occasionally I have bleach baths. That’s right. Bleach baths. The bleach is very diluted - half a cup to a full bath. These baths help with infection. And people are aghast. Sales people are pitching their bleach-alternatives. What a moneymaker.

A few years ago, I was washing my lunch dishes in the tearoom at work. A colleague I’ve known for years was staring at me and I asked them what was wrong. They told me that she cannot bear the thought of me using petroleum products, and they wished that I didn’t have to use them. I thanked them for their concern, explaining that I have tried a range of medically certified and natural based products and paraffin works the best for me. They went on, saying there must be something else. I explained to them that without the level of moisture paraffin provides, my skin would be very sore - cracked and prone to infections and my movement would be restricted. I later heard she couldn't bear to touch things after I had. We’ve not spoken much since.

Rosalind Robertson writes about the pesky, unqualified people who tell us to stop taking our prescribed meds. She gives some great advice: "If the person telling you to stop them isn’t your doctor, tell them to fuck off." I've been too polite all these years.

Medical shaming feels harder when it come from within your own community. And it concerns me when much of this medical shaming comes from people relatively new to Ichthyosis. Newish parents. New spouses, hoping to cure their partner, because love. Many have no scientific knowledge or qualifications - jumping on science cosmetic and sales jargon, making unfounded claims about products' success.

A year ago, I came into contact with a woman spruiking some ‘natural skincare products over medically prescribed ones. She stated that the products for treating Ichthyosis have not been formulated for a market yet. She claimed that petroleum was dirty, and banned in some countries. She also claimed it was cancer causing. I told her she was putting guilt and fear into the patients and parents who choose to use petroleum based products.

I was also contacted by a woman who told new parents their babies' Ichthyosis was caused by "unclean" Europeans who ate dirty meat and were involved in the sex industry in the 1500s-1700s. Talk about fear mongering
.
Recently I was accosted by a sales woman, "accidentally" trying to sell me an expensive bath product (an actual bath) when I said I've been so unwell with skin pain. She subtly left a link to the product on my Facebook status. I told her while I appreciate she cares, I felt she was being opportunistic. We aren't friends anymore.

There's nothing like opportunistic pyramid sellers providing false hope to people with skin conditions by spruiking their "miracle cures".

And these people doing the medical shaming aren't medically qualified. They might have been to The Beauty School, or a pyramid selling course. They might even dabble in making herbal creams for their partner's skin. But they haven't done 18 years at university to become a dermatologist. And so few of them actually live with the condition. Sadly, they're pitching their products by making people (mostly parents) feel bad about using prescribed products - scaring them with unfounded scientific claims. And laughably, they suggest products that cost thousands of dollars above basic treatments for underprivileged families.

I trust my dermatologists with my life. I’ve asked them several times what the long term impacts of using paraffin is. They told me it’s a very low risk of getting sick from it. I’ve been using this ointment since I was about 10 - so 24 years - and it works fine. It’s the best moisturiser I have. It saves my life.

I will never take an unknown trestment from an unknown person. Here's why.

About 10 years ago, a pharmacist - who I trust - recommended me a treatment for sore ears after a flight. It was an antihistamine. I hadn't used it before but I heard it helped. My skin peeled off my hands and feet. I couldn't walk. I couldn't touch things or use my hands. I was off work for a week. I cannot risk a reaction like this again. If this is the reaction I get from a tested, regulated product from a qualified specialist, I shudder to think what might happen from an untested, unregulated one.

Consider these things before you medical shame:

• There are many forms and severities of ichthyosis.
• Treatment types and treatment success varies between patients. A single product might work wonders for me, but make my friend with Ichthyosis very unwell.
• No one knows their body and treatment like the patient.
• With grief comes desperation. Some parents are so desperate to find treatment for their children that advice like I've mentioned scares them into thinking they aren't doing a good enough job using prescribed products.
• Many of these recommended products are unaffordable, not covered on pharmaceutical or medical assistance schemes. (A couple of parents told me they can't afford the alternative treatments due to this.)
• Please don't think that patients, especially adults, haven't tried many different treatments already, and aren't happy with the one they're using.
• Just because skin "looks good" with a certain treatment doesn't mean it feels good. Ichthyosis is not solely a cosmetic condition.
• While natural products might work well for some patients, they might not work well for others. It's fine to use natural products - but understand they might not work for everyone. Just as prescribed medical products might not work for everyone.
• Some of the products being suggested haven't even been formulated for market yet.
• Just like I don’t want to be told that my food is ‘dirty’, I don’t want to be told by someone other than a doctor (and a specialist at that) that the medical products I use are harming me.

Please consider the impact of providing "research" and "facts" about alternative treatment products, especially when the products we are using are keeping us alive. People tell me petroleum based ointments will kill me, but they don't consider that me not using them will do more damage while I'm alive. The risk of me dying through any means - including cancer - is low.

Just as you ask me to respect your religion, please respect my medical choices. This sort of advice, fear mongering and guilting is not compassionate. It is divisive and dangerous. It's bullying. I worry about the impact it will have on new parents looking for information. I won't tolerate medical shaming from a well meaning, yet unqualified and opportunistic stranger.

(Image description: flowers, herbs and pills. Text: 'Medicine shaming, plus my blog link.)

Did you like this post? Did it help you or make you think? Please consider buying me a drink!

The time I felt silenced by a person in power. (And why it's taken me two years to speak up.)

Over the weekend, a story came out about Jennifer Hawkins not speaking up about Donald Trump's derogatory comments towards her on stage at an event. I have to be honest and admit I haven't been following the US Presidential Election closely, other than the odd headline revealing what a dangerous man Donald Trump is.     

My editor put a call out in our Facebook writer's group, asking if anyone wanted to cover the Jennifer Hawkins and Donald Trump story. A colleague pitched an angle, and it inspired me to share my own experience of being silenced because I was afraid of someone in power. I sent off my experience to my editor, and Jenna Price wrote this article for Daily Life with a few of my quotes.
 

I think it might be pretty common for women to experience harassment or uncomfortable comments from a manager or senior member in the organisation and not speak up because of the ramifications to their career. It's happened to me, a number of times. I wanted to share the whole story with you, so here it is.     

I put so much of myself into my writing, and so readers - and editors - come to know me very well. Perhaps they feel my candid writing about my disability gives them permission to enquire, or joke about it, more than a stranger.     

I was at a conference, hanging out with fellow writers. I always love seeing my writing friends in person - they just get the industry, and we talk so much online it's nice to see them in real life. It had been quite a successful time for me - winning several writing awards and being published across many networks.    

One editor, who, along with their team, gave me such a great opportunity, made a few comments about my skin.     

"I wanted to slap you on the bum but I didn't know if it would hurt you", they said as they greeted me while I checked into the hotel. I laughed it off, air kissing them back.  Did I hear right?

I dropped my bags in my room, and then headed down to the hotel bar. A number of us chatted over cocktails and snacks, talking a mile a minute. It was truly great to see everyone at this annual conference.     

An hour, one cocktail and lots of selfies later, I got up to leave, saying I wanted to have a shower and get some rest before that evening's event. "Don't leave your skin in the shower", my editor laughed.     
I waved everyone off, cheeks burning. When I got to my room, I told my friend who was sharing with me what was said. My roommate agreed it was strange, but we agreed it was just a joke, not meant with malice.    

It was such a personal, odd thing to say. My editor hadn't commented on anyone else's personal attributes as they had mine, not that my writer friends had any obvious disabilities that I knew of.

A few months earlier, I had written a long post on Facebook (later inserted into a blog) about how my fears of staying in shared accommodation while traveling were conquered when I was forced to shower in a hostel. Fellow travelers had to see me first thing in the morning - face unwashed, dry skin - and I came to be comfortable with that. Perhaps my editor had read it? Of course, I was - and still am - conscious of leaving my skin behind, so my editor's comment made be burn up in front of my colleagues and friends. What if I did gross out my roommate by leaving skin behind in the shower? (I later vowed not to apologise about my skin.)    

We glammed up for the evening. My friend and I were five minutes fashionably late - she looked so fabulous by the time she put on her makeup and curled her hair.  The lift to the bar was full - and my editor was in there. We squeezed in. My editor spoke up: "what took you so long ladies? Did Carly spend ages getting the skin on her face ready?", they asked.     

I was mortified, but quick. I said  "No, Liz* spent ages putting her makeup on. I don't need makeup."    
The lift was silent. I got no apology. This third time frustrated me.     

My writer friends drank and chatted the night away. Of course my editor's comments were not enough to make me worry about my appearance, but I did worry I was giving so much about myself in my writing that it made readers comfortable to say really awkward things.    

When we returned to our hotel room after the event, my roommate and I discussed what happened in the lift, at the bar and at reception. We couldn't quite believe it. (When I called her about mentioning her in this article, two years on, she still agreed it was weird.) I said those things have stuck with me for years and I didn't want to speak up. I worried about my career.     

While perhaps my editor was so familiar with my work, and sees me comfortably making jokes about my skin, they felt it gave them  permission to make a joke too.     

But here's the thing. They were in power of me - at the time I had a writing contract with that publication. It was good money and I didn't want to jeopardise the contract or my reputation with my editor and their team.     

But as an employee and contractor with a disability, insensitive or discriminatory comments about my disability from my superiors can be difficult to manage. Who do I tell when the person making them is the boss? What if, by being assertive and saying these comments make me feel uncomfortable, I am breaking a code of conduct.     

Perhaps this is why Jennifer Hawkins didn't speak up about Donald Trump's belittling comments. He publicly made comments about lying about her intelligence, and suggested Jennifer "came and came and came". She avoided his kiss on the lips by turning her head.    

On the weekend. Jennifer Hawkins said "I've said it before, he has treated me with respect, and so has his family. Beyond that, what else am I going to comment on," she said. She said she didn't want to get involved in making a political comment."    

He has given her many opportunities as Miss Universe. At one stage he was her boss. My editor gave me many opportunities too. But it's comments made from people in power who stop us speaking up. And it shouldn't.     

These sorts of comments because of familiarity would never happen in my regular day job as I don't "put myself out there" as much as in my writing. But how does that excuse the comments from my editor? It was really easy to blame myself because as online writers, we are constantly on the receiving end of justifications for negative and abusive comments. And perhaps Jennifer Hawkins (and the public) felt like she should have just laughed Donald Trump off because she's in an industry that focuses on physical beauty. It still doesn't make it right, though.     

I've never spoken to anyone other than my hotel roommate about how I felt when my editor made comments about my skin. I excused them because I felt I invited them by making readers comfortable enough to feel they can have a joke with me. Just like readers ask how sore I am, because I wrote about it. But I never asked for it. My editor held the payment and writing opportunities over me - but they also made me feel more self conscious than I needed to. All for a byline.     

Writing this piece felt cathartic. I might be risking my reputation in the media industry by speaking out (just as I've been told that I might be overreacting or too sensitive when I've spoken up about bullying in my day job), but I don't want my silence to be complicit anymore.   

(*Name has been changed.) Did you like this post? Did it help you or make you think? Please consider buying me a drink!

Ichthyosis in developing countries: the stigma experienced in Africa.

 

In July I was alerted to some children in Wajir, Kenya who are suffering terribly from Ichthyosis. I rarely use the term 'suffering' but these children really are. My heart breaks for them.

The children haven't received adequate medical treatment and are hidden from their community. I've been told that children with disabilities are killed or left to suffer. Their families and communities believe it's witchcraft that caused Ichthyosis, and bear great shame in having a child that looks different.

I was told differing information about the children – I don’t know how many children are affected by Ichthyosis, and when trying to get in touch with one boy’s immediate family (Baby Abashir, below), two men initially claimed to be his uncle, and later told me they are just part of the campaign to save these children.

An aid worker contacted me on Twitter and then by email. She said the children have a dermatologist and creams. But she couldn’t give me exact information about how I could help – where to send creams to, how to get information about care plans and emotional support to them.

And the Foundation for Skin and Related Types (FIRST) tweeted at this aid worker offering only a teleconference between the Kenyan dermatologist and FIRST, but the infrastructure in the town of Wajir doesn’t allow this.

There has been a social media campaign (#savewajirkids) which has raised a lot of awareness that these kids exist and need help. But sadly, a lot of it is clicktivism - sharing tweets and expressing sadness, without offering tangible help.

I worry about the speculation created in the #savewajirkids social media hashtag. A lot of misinformation has been spread - including how Ichthyosis might have been caused by nuclear waste. And there are tweets expressing horror about the image of these kids. I don't agree with these kids' photos being used for speculation if there are no facts to back them up. Yes, awareness needs to be raised, but the kids need their dignity, respect and tangible help. A tweet will raise awareness, but won't help these kids. A treatment plan and ongoing support will.

And I didn't see many people in the Ichthyosis community talk about these kids. (I wanted to help them like I helped Baby Julius - but I could not do it alone.)

The same week I was alerted to the Wajir children via the hashtag, I was contacted by an ABC journalist based in Kenya, who is committed to telling the kids' story sensitively - to educate the community and to reduce stigma. He wanted to cover this story, but I am not sure whether it’s been published yet. In a lengthy email, I told him about my treatment and the support I receive, and what might help these children. I only hope he has passed the information onto the children’s families and dermatologist, even if the article has not been written.

So with the futility of contacting the aid worker, the men claiming to be family, a brief response from FIRST, and the cessation of the journalist's emails, I don’t know how else to help these children, which is why I am writing this blog post.

I felt a terrible sense of privilege explaining my situation to the journalist, because I know just how little these children have - in terms of medical aid and understanding. And I’m reminded of the life-lottery – I believe my life would have been a lot different if I was born elsewhere. There would be a different healthcare access, and also different attitudes towards appearance diversity and disability.

In reading about the Wajir kids and answering the journalist’s questions, I've realised how lucky I have it. How lucky so many of us with Ichthyosis who are born or adopted into the first world are. While I have access to medical treatments such as ointments and antibiotics, sadly these children do not. Their skin has deteriorated so much. And I've never faced this type of stigma and discrimination faced in Africa. (I know others in Asia who have experienced similar stigma.)

I don't know whether my advice to the journalist was useful because there's still so much more to be done in terms of rigorous treatment to get the kids' skin to a manageable state before commencing routine ongoing treatment, and of course, encouraging acceptance and inclusion in these communities. Additionally, good health is helped along with good nutrition, and families might simply not have enough money and access to nutritious food to ensure their children with Ichthyosis are eating well. I know how painful the condition is and I can't imagine the pain these kids ensure when it's gone untreated for so long. I am very sad for them.

In 2014, Jennifer See wrote about Ichthyosis in Ghana on her blog Confetti Skin. Jennifer wrote:

"The youngest child is Amotalé. Michelle told me that while Amotalé is 10 years old, she is only the size of a healthy 4-year-old. Her name means, "Has it gotten to this?

She has scurvy from vitamin C deficiency and walks with a stick because her legs won’t straighten around the thick scales on her joints. She has severe malnutrition and her belly is distended. Her poor head is so thick with scale that it is like a cap. Michelle told me that two days ago, when she gave Amotalé a bath and removed some of the scale from her head, she saw the skin underneath was leaking pus and was infected. A separate Facebook post from the same day even says there were maggots underneath her scalp. Michelle said that Amotalé hated the bath, but once she was done with lotions, the little girl started dancing."

There are others living with Ichthyosis in similar conditions across the world (Nepal and India). The stigma and lack of knowledge about the condition and access to treatment is very similar to what the children in Africa experience.

I have an online friend with Ichthyosis who lives in Kenya. Esther, in her 30s, wrote to me outlining some of the experiences she has had, as well as some advice. She has just got married! I wanted to get a sense of what it’s like to live with such a rare, stigmatising condition there, and she has given me so much insight. Esther has met with Baby Abashir and his family to provide them with advice and support. (I have edited her words a little for punctuation and grammar.)

 

"I have lived with the EHK Ichthyosis all my life. It was very difficult for doctors here to understand it know what was wrong with my skin so it was such a hard time for my parents. In those young years nobody gave them the right diagnosis so I was grouped with all others who have the common skin diseases. I saw my dermatologists with no success.

I am happy with my skin, it had improved so much I no longer itch or get blisters which were so bad in my years. I am now on creams that a doctor who is good on alternative medicines. I also exfoliate my skin which makes it smooth. I am also on whole grain diets which has helped my skin.

What baby Abashir us going through with his family is what we went [through too]. I have faced isolation, stigma and discrimination in different aspects of my life since not many know or understand what Ichthyosis is. And doctors too, I have faced difficulties with them too when I try to explain to them.

I do work am self employed in informal sector - I sell handbags which I love. That's how I manage. I can say that am fortunate my family loves and accepts me, so I am confident.

But I am sad to say kids with Ichthyosis are hidden, not educated and even are abandoned by their families. The culture here contributes to this because they believe it's witchcraft.

So children and adults in the most remote parts of Kenya continue to suffer in silence.

My dream and hope is to reach them and offer them hope and support so a fundraiser us great so that the money we get [can] help baby Abshir and other in Wajir. This part of Kenya is most affected with my children suffering. It’s a very hot place so heat intolerance is so great.

I don't know what we can do any suggestion in this is great so basically we would need help with creams, eyedrops, and even monetary so we can be able to achieve the goal of reaching out to this other kids. Mostly I need to travel there to create awareness in this community and connect and give them moral support."

The journalist told me that when the Wajir children’s parents were told Ichthyosis is a genetic condition, they blamed themselves, believing they caused it.

Oh my heart.

Parents, please don't blame yourself. Many parents don't know they carry the gene until their child is born with Ichthyosis, though it can be screened for during pregnancy. (My parents didn't know, and they've since been genetically tested and both carry the gene. It was passed to me recessively.)

The children have been hidden away from their communities – because disabilities carry a lot of stigma and shame in third world countries. Again, tears.

These kids need to be shown love and compassion and that they're a valuable part of the community. It starts at home and with medical staff. Communities need to be made aware of disabilities - that they aren't caused by witchcraft and that people with disabilities aren't to be hidden away and ashamed about.

The stigma is as painful as the skin condition.

In a paper titled Reducing Stigma and Discrimination to Improve Child Health and Survival in Low- and Middle-Income Countries: Promising Approaches and Implications for Future Research (Nayar et al, Journal of Health Communication, September 2014), academics discuss the impacts of stigma on the development of children with chronic illnesses and disabilities.

"The manifestations of stigma can lead to a number of stigma outcomes, such as delayed treatment seeking or poor medication adherence, that ultimately lead to longer term stigma impacts, including poorer quality of life and increased morbidity and mortality. For children under 5 years of age, stigma and discrimination experienced by parents—for example, as a result of having a stigmatized disease such as HIV or belonging to a stigmatized group such as the scheduled caste in India—can impede access to or uptake of available health care services, leading to poor health outcomes for children."

The paper suggests stigma and discrimination reduction methods should be implemented into infant and child health programs:

"Increased investment in stigma and discrimination reduction interventions and program evaluations is also needed to overcome the evidence gap regarding stigma and discrimination reduction interventions. Program implementers should prioritize regular inclusion of measures that assess stigma and discrimination in evaluations of all interventions targeting neonatal and child health and healthy early childhood development, including interventions addressing integrated care of mother and child. The field would also benefit from improved, more detailed reporting about the content of community engagement, communication and counseling…"

I am concerned that the stigma around these children has prevented them from receiving adequate education opportunities, thus preventing them from entering the workplace, and perpetuating a cycle of poverty. Esther’s story is proof that the stigma can be broken.

Another academic paper I read (The Stigmatization of Disabilities in Africa and the Developmental Effects - Digital Collection, 2013) states:

"It is widely believed in areas like Africa where stigmatization creates negative connotations that the employment of persons with disabilities would cause a less productive workplace, due to special needs and slower production rates." The paper provides examples of terrible human rights abuses, but also provides suggestions of the benefits of inclusive education, as well as inclusive advocacy efforts to help shift attitudes of governments, policy makers and financial institutions. "One example of how this can be accomplished is in the case of AbleChildAfrica http://www.ablechildafrica.org/, where children have a say in everything they do. The Board meets with the communities two to three times per year and consults with their local partners regularly. These partners work with children everyday so they see what works and what does not in terms of program implementation. The partner organizations also work with the families of the disabled children in order to move away from the idea of just leaving the child to be taken care of by someone else and not included."

Ethan, who is 10, wrote some advice for these children. He wants these children to see they're not alone. I love his wisdom.

"Having different skin is nothing to be ashamed about. I have Ichthyosis just like you😀. Even though you have different skin you should know that you are the same as anyone else on the inside. I know it must be hard to stay cool in the hot weather in Kenya. We're all the same, if I had went with my mom she would have treated me as well as she could in that environment for even a week or two. It can be hard even here in North Carolina where it's cool some of the time. Even now my skin has been through a lot more than most people. Even with lotion and a cooling vest I still can get really hot and uncomfortable here. I can only imagine how much more challenging it could be with so few resources.

My mother told me that you are having a lot of trouble getting the supplies you need. I was glad to see you were more comfortable with the lotions that you got in Nairobi."

Here's a photo of Ethan and his Mum Erin. Erin is incredibly proud of her son.

So here’s what I’d like the parents of the Wajir kids, and the wider community, to know about Ichthyosis. It seems so simplistic, with the complexities of the treatment and perception of disabilities in the third world, but it's all I can do.

• Ichthyosis is a genetic condition.
• It's genetic and not contagious.
• There are many types of Ichthyosis with varying symptoms, appearances and treatments.
• Regular showers and baths in clean warm water, and applying ointments such as Vaseline can help.
• Adequate nutrition helps - fresh fruit and vegetables, meat, dairy, plenty of water.
• Once the children's skin is managed, they should be encouraged to get an education, form relationships and get jobs.
• You are not alone.

Here are some other resources from medical experts about treatment:

From the Royal Children's Hospital, Melbourne,

From Dermnet, New Zealand.

I can only hope that now these children in Wajir have been "found" and received some media attention, an education program can be provided to their parents, medical staff and the wider community. As well as reducing stigma, they could get the medical treatment they need, as well as being included and valued members of their community. I also hope their doctors can look to adults and young people with ichthyosis to see how we’ve managed, and also to show these children and their families that a good life is possible. While it has been hard for me to connect with this community, I hope that this blog reaches them somehow, and they can see they aren’t alone.

If you live in Africa and want to tell your story of life with Ichthyosis, you are most welcome to leave a comment below.

This is the second post in my series "Ichthyosis in developing countries". You can read the post about Ichthyosis in India here.

 

Australian Centre for Leadership for Women Diversity Awards

On Wednesday night I had the pleasure of attending the Australian Centre for Leadership for Women Diversity Awards in Sydney.

From the website:

"ACLW’s Awards Program commenced in 2006, culminating so far in three national awards for women’s advancement, with more than 60 national recipients being recognised and awarded, including women, men and organisations. This year is ACLW's 10th Anniversary of its Awards Program for women's empowerment. The 2016 Diversity Award refines the spirit of ACLW's Award Program as it seeks to platform in a mainstream forum, recognition for community and organisational initiatives in Australia that value and empower women in Australia who come from diverse backgrounds, and particularly from groups that are marginalised."

Dr Diann Healey Rodgers runs the Australian Centre for Leadership for Women voluntarily and entirely on her own.

We were treated to performances by the Sydney Gay and Lesbian Choir and a troupe of Greek dancers. The presenters included Prue Goward, Christine Forster and the speaker of NSW Parliament House Shelley Hancock who was hilarious.

I was a second place winner in the Disability category. I won because of my work organising the Australian Ichthyosis Meet. The category winner was Women with Disabilities Victoria (who I am doing some work for next week) and the third place winner was South East Centre Against Sexual Assault. Here are the two other category winners - Keran and Dagmar.

Every first place winner made a speech and they wowed the room. From domestic violence support and refugee welcoming to providing child care for women in medical research and climate change research and prevention, the work these women do is so important.

I am so honoured to be recognised in a room full of amazing, accomplished and diverse women truly making a difference In Australia.

A big congratulations to Kyri Fuss for being a co-recipient - one of the 75 beneficiaries of the Australian Ichthyosis Meet. And thanks to the Australian Centre for Leadership for Women for the award, Professor Ingrid Winship for the reference and ongoing support, the Ichthyosis community especially the attendees, the supporters of the Ichthyosis meet who made it happen, my wonderful Adam and parents, Layne Beachley and the Aim for the Stars Foundation, the Awesome Foundation, FIRST and UK Ichthyosis Support Group and my wonderful blog readers and social media followers for helping me along the way. ❤️

In my entry, which Kyri (above) provided a supporting statement for, we both said the meet was something we could have done with when we were young.

Oh and if you think my life is all pretty dresses, fancy meals and glamourous award ceremonies - you'll be pleased to know that I am grounded (literally).

After the awards ceremony at Parliament House, Kyri and I got back to the hotel, I bought some cheese and crackers, and then got changed for bed. As I came out of the bathroom, the heavy door closed on me, making me slip on the carpet and pushing me over. I hit my head, knee, shoulder and bottom. Ouch but laughing. A bit bruised now!

We stayed up til 11 pm raging to This American Life podcast (I fell asleep halfway through the first act).

Ha!

You can read about all the winners here.