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. 

Wonder by RJ Palacio. Choose kind.

When I was in NYC I spent an afternoon with Rick Guidotti By chance he had a parcel arrive, and inside was his copy of Wonder - returned from a friend who'd borrowed it. He passed it onto me.

(source)

Wonder is written by RJ Palacio and I've devoured it in a day. (There may be spoilers in this, so read on with that in mind.)

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.

Like when I read Robert Hoge's Ugly, I felt such great empathy to the point of tears and elation when reading about facial difference.

The things that I identified with the most were:

• the way kids (and even young adults)think it's uncool to hang out with people who look different.
• the impact a visible difference has on those who love us.
• that someone else's appearance is a point of conversation. All the characters talked about Auggie's appearance and they were asked about it by others too.
• the good people outweigh the nasty people thousandfold.
• the way Auggie was adored by his parents. They only ever wanted the best for him and showed him so much love. Just like mine do.

I also realised just how many interactions I've had (and I'm sure my parents and teachers and perhaps managers have had) that have been prefaced with an explanation of my appearance.

Wonder is from a number of characters' perspectives - the other characters all talk about the impact of being around someone with a visible difference. Their honesty made me wonder whether I've ever been a burden to be around. I thought back to a time where a group photo was organised for a farewell. Everybody was called for the photo except me. It may have been an innocent oversight but I genuinely worried that they had excluded me because they didn't want me in the photo, that my face draw questions just like in person.

Auggie (and the other characters) observes the way people react when they first meet him. He's gotten used to it. And he has had to mentally prepare for meeting new people. There's the uncomfortable silence, the focus anywhere but his face, the open questions, the rude shocked reactions and the fear. It's the fearful reactions towards my face that sadden me the most - people gasping, children hiding their faces and yelling that they don't want to look at me. I hate it. I wish the attention could be diverted, because when a child is vocal about not wanting to look at me, the people around us stare at me.

There's a paragraph from Justin, the boyfriend of Auggie's sister Olivia:

"The universe was was not kind to Auggie Pullman. What did that little kid ever do to deserve his sentence?...So doesn't that make the universe a giant lottery then? You purchase a ticket when you're born. And it's all just random whether you get a good ticket or bad ticket. It's all just luck."

The sentence that Auggie has - being treated cruelly because of his appearance for his whole life - made me think about how society places importance on the physical appearance and that outsiders cope with an individual's visible difference worse than the individual. There seems to be so much discomfort, avoidance and exclusion, perhaps because of the sense of value outsiders place on their own appearances. Even the students' parents were uncomfortable by Auggie's appearance.

After Auggie is physically attacked by a group of older students, he asks his Mum:

"Am I always going to have to worry about jerks like that? Like when I grow up, is it always young to be like this?"

His Mum took a while to answer. When she did. She said there will always be jerks in the world but she whole-heartedly believes there are more good people in the world who will look out for and stand up for Auggie. As Auggie (and I) experienced, there is a pack mentality with bullying, there is also fortunately a pack mentality for kindness.

Courtney recently read the book too, and she said the book made her fear for Brenna's future. In a comment, I said to her don't be too disheartened for the future - especially when this is fiction and you've connected with so many real stories of people with Ichthyosis. Life will be difficult but it will be ok :)

Friends have told me how wonderful they thought Wonder is. One friend said it's on her son's curriculum. That Wonder is getting adults and children talking about visible difference is a great thing. It inspires empathy and kindness and gives a really accurate account of what it's like to live with a visible difference. There are some profound precepts in the book - showing how broadly young people think.

(source)

I would have loved Wonder to have been on the school library shelves when I was little. There was no literary role model with a visible difference when I was at school. Kids are very lucky to have Auggie now.

Rick gave me this book in confidence that I'd pass it onto another friend. I sure will. Wonder shares such an important message.

(RJ Palacio has since released a companion book, from the perspective of Julian, Auggie's main bully. It's available as an ebook on Amazon.)

 

Ichthyosis is a big adjustment for a lover.

Since starting this relationship, I've had to see Ichthyosis, chronic illness and visible difference in layman's terms. From the perspective of someone who has been raised with good values and has a polite demeanour, yet never encountered such visible difference or chronic illness.

When we first started talking online, he told me he was hesitant about getting to know me because of how I looked. Perhaps I overreacted, but this did sadden me, to the point that I wrote a blog post about it - or the wider issue of not wanting to be a heroic choice out of pity. Fortunately, even after reading my words, he still wanted to meet me. And lucky for that. I'm so glad I gave him a chance and not let my perhaps unfair expectation of everyone needing to be knowledgable about visible difference and how to react cloud my judgement (of course, I still expect politeness from people when they first talk to someone who looks different...). I've had to lower my expectations. Not in a bad way. Until he met me, he knew nothing about ichthyosis or appearance diversity - I have to be reasonable about this. I can't expect him to fully understand everything yet. I keep reminding myself that not everyone I meet has had an education or experience of visible difference, and why should I expect them to?

But I commend him. He's doing an amazing job with such a high maintenance girlfriend. He asks a lot of questions, is never rude and very patient. And he's so gentle with me. He wants to spend every moment with me, Ichthyosis and all. I ask him often, "are we real?". He pinches me gently and says yes, we are.

One thing that I've noticed since being with him is that this skin condition is deceiving. While I look the same most days - and while my face looks relatively calm at the moment, there's the painful skin that is not so obvious. Oh the pain, there's been a few very sore weeks lately. While I say I'm sore, he might not have been able to see the difference, except perhaps in the way I walk or my need for rest. And at times I felt like he just didn't understand that I can't just bounce back from a day of regular activities. I need to lie down after a shower to calm the pain, I need to do nothing for a while, I'm not lazy. I didn't want to be seen as a burden on him.

I've had to explain that Ichthyosis isn't just about appearance but a physical chronic illness. My dermatology team has invited him to my next appointment so they can talk to him a little more about the medical side of Ichthyosis and also to give him hope. He's accepted this invitation keenly. The head derm, who has been seeing me since I was six, joked that while my Dad may have approved of my boyfriend, the dermatology team will need to, too.

My boy has observed and commented on the things I take for granted - which are reasonably and understandably freakish to someone who has never encountered Ichthyosis before. There's how hot I get. I forget unless I'm touching someone else, and that had been rare - so much skin hunger. I'm hot in two ways, he compliments me, then moves away to keep his own body cool. There's the need to be careful with what's on his skin. Chemicals and chilli are to be washed off before he comes near me. He's not kissing me after eating the hottest chilli sauce on the menu. (He's a man that likes his chilli dares...). I also eat a lot due to the rapid skin renewal, and this has been something that's surprised him in the first couple of weeks.

And there's my skin. I shed so much skin. Initially I would brush it off his clothes, embarrassed I'd leave my mark on him. I'd worry about the skin in my bed. I'd worry about my peeling face in the morning or how my skin would fall onto him. I'd worry about my cream and how oily it made his clothes. He's said countless times that it doesn't bother him. He finds my skin flakes in his pocket and smiles that he's carrying me with him wherever he goes.

These little things my skin does I take for granted amaze him. And his acceptance of them - the aspects of the condition that so many have found yucky - amazes me. I feel so, so lucky to have found him.

He holds my hand right, pulling me closer while we are waiting to cross the road, and steering me away from those who stare. I don't see them staring - I don't much anymore, but I know he's trying to stop me seeing. He looks back at those staring, angry for me. I see that. I don't want him to be angry and I hope that one day he can shake off those stares like I can.

It's an adjustment for both of us. This isn't just adjusting to space, music tastes or bad habits. It is an uncompromisable adjustment. It's adjusting to a medical reality that can often be severe, unpredictable and embarrassing for me. My Ichthyosis can be frustrating, upsetting and an inconvenience, and for so long, my skin's nuances have been private. But we're doing ok. I guess it's a unique challenge like every relationship has. I've said to him...

On the weekend we were laughing about something. I told him to "just be normal". And then I apologised. "Sorry, here I am telling you to be normal when I hate that term". And I joked again that I am not normal enough. He told me to stop using that word, because I hate it. He gets it.

He has a nickname for me - born while watching The Great British Bakeoff. It's Flakey Strudel. "I love you, my flakey strudel", he says. And I said that as long as we have each other we will alway have heat. Cue bursts of laughter.

And that's it. It's about being comfortable enough to have a big laugh about my situation. Our situation. Because that's how we will rise above that hard stuff.

These are some quick tips I've thought of to help your partner adjust to your chronic illness. Have you got any more?

 

On 'normal' and cures and pride.

Sometimes people compliment me when my skin looks paler than usual. It's as though I'm five shades closer to a white complexion. (Ichthyosis-less, my South African heritage would probably mean that I'd have pale brown skin.) What they're not seeing (or feeling) is the pain on other parts of my body and the itching. And while these compliments are well meaning - and who doesn't want to be told they look great? - I can't help wondering whether looking paler is the path to being normal.

Normal. What's that?

It's as though the path to 'normal' is the expected path I should want to take. When people tell me that I'm normal just like everyone else or that I'm doing things that normal people do, they don't understand their good intentions are quite othering. 'Looking past' my face or coming to some sort of epiphany that I'm really quite 'normal' is naive and shallow. It's as though someone thinks they've done a good deed for not lumping me in the other category - the one where people are not 'normal'.

My blogging acquaintance Roni - a proud woman of colour - writes about the phrase "I don't see your colour". She writes: "When you tell me you don’t see my color, you are basically telling me that you don’t see a huge part of who I am and that doesn’t help me. What I want you to say is, 'I see your color. And it’s beautiful'." I identified with her post from a visible difference perspective. By someone saying they don't see colour they're saying they don't see your identity. They're not wanting to associate you with belonging to the other category that they are not comfortable with.

Earlier this year someone I had dinner with asked whether I'd want a cure, even just a treatment, to look more normal I guess? The conversation was uncomfortable; telling of their perceptions of a life lived looking different. They went on to say that by changing my appearance, it would be so much easier for me - fewer questions, comments and stares. I'd be being kinder on myself, they said. Their rationale, while not considering the pain aspect of Ichthyosis, was partly compassionate, and partly because they admitted not being able to cope looking like me. "I'd do myself in", were their exact words to me.

This conversation was full of beliefs and personal insecurities being pushed onto me. My dining partner may as well have been asking "wouldn't it easier to be straight?", or "use a little face whitening cream, it'd be kinder on yourself in this white society?".

Once I picked my jaw up off the floor after realising they'd alluded to the idea that a life like mine isn't worth living, I answered no. I wouldn't take a pill to cure or drastically treat my Ichthyosis. I have written a little about this before - during Ichthyosis Awareness Month and also my rant about pyramid selling - but since that question I have thought about it more deeply.

There's currently no cure for Ichthyosis. There are treatments to lessen the redness, scale, and pain. There have been since I've been alive. Retinoids, topical and oral steroids and infusions are the main ones that my doctors have recommended - treatments that will severely impair the quality of life that I currently have.

I see two sides to a cure: a medical cure and an appearance cure. I don't want either. A medical cure (or treatment, as things stand now) may hold worse side effects than Ichthyosis itself. And I think that an appearance cure is conforming to what society expects of me - the expectation that I would want to look 'normal' and de-identify with a condition that I've become accustomed to and accept. I see it as a bit vain, even.

This isn't to say I don't believe in cures, nor do I think striving for one is a bad thing. I can understand the yearning for a cure, especially if your life has been changed significantly by an acquired disability. You'd want a cure to get your previous life back, to be free of pain, to be ambulant, to live life 'normally'. I have a friend who is undergoing stem cell therapy to one day walk again - the work he puts into his rehab is admirable - and it's working for him.

When I was young, my family and I were in search of a cure. This was tiring - going to various skin specialists and herbal practitioners, the side effects were awful (not being able to go out into the sun, giant pieces of skin peeling off, lots of time off school, fatigue, weight gain, lack of sleep, the prospect of foetal defects...). I also met a number of adults with skin conditions who were also in search of a cure - they were tired too, and their conditions had not improved from the treatments they'd tried. And so of course I wondered why I had to visit another naturopath when these new acquaintances were not cured. In fact, they told me stories of how their skin was a little better, but their lives were impacted significantly, in a negative way.

Living with Ichthyosis has been tough. The pain is the worst. And then people's reactions. Those are two things I could do without. But it's also brought many good people and opportunities into my life, which I am very grateful for. And I'd be weighing up the impact on my capacity to live my life now versus the time spent and side effects of treatments.

Leah Hobson writes about being comfortable with her disability - not wanting to escape it. She mentioned the "faux compliments" people give her, telling her they could almost forget she's disabled. She doesn't want a cure for her blindness either - it has shaped her. There's an idea lurking behind them that everyone with a disability has the need to appear as non-disabled as possible." Leah writes that out of niceness, she's thanked people for their faux compliments. "I've actually thanked people for saying something that made me feel at best unintentionally devalued." She makes no apology for being comfortable of her disability.

Jax Brown also writes about the disempowerment that comes with de-normalising: "I am also routinely disempowered and disabled by a society which views my non-normative body as less than the ideal, the less then the so called normal." But like me she has pride. As Jenny Morris writes in Pride Against Prejudice, physical characteristics of disability or visible difference are seen as "not right and not admirable" and there's an expectation that "we wish to be normal or treated as we were".

But it's ok not to want a cure. and it's ok to be proud of having a visible difference or disability. This is who I am and this is what it is. It's not a life worth doing in, or a face to look past. I'm proud. This is my normal.

 

Appearance diversity: Andy Jackson - a body shaped like a question mark.

I've known Andy Jackson for around nine years now. I used to perform poetry in cafes and pubs in Melbourne and he was either organising the event or performing poetry, or both. He's an accomplished and celebrated poet - published in Australian and international publications, his book of poems was shortlisted for the 2010 NSW Premier’s Prize for Poetry, and has performed locally and overseas including The Age Melbourne Writers Festival, Prakriti Poetry Festival [in Chennai, India], Goa Literary & Arts Festival, Australian Poetry Festival, Queensland Poetry Festival, Newcastle Young Writers Festival and Overload Poetry Festival. Andy also runs writing workshops.

Andy and I reconnected in February this year when I read out a piece at Quippings - a disability arts event at Hares and Hyenas in Fitzroy. Andy was in the audience. We've been emailing back and forth and met up again recently before he went off overseas for the second time in a month (lucky guy!).

I've always been curious about the curvature of his spine, but never asked him.

He tells his story here today.

"In the last twelve years, I've had the pleasure of quitting four positions – the Commonwealth public service(Child Support Agency, would you believe?), a cafe-venue-bar I co-owned called “Good Morning Captain” in Collingwood Melbourne, Medicare Australia (yes, in a call centre), and a claustrophobic admin job for a micro-managing tax lawyer. And I've lived in eight different houses in the last twenty-five years (though, yes, all of them in Melbourne). But there are two things that I could never leave, even if I wanted to. They define me. I'm as inseparable from them as wings from sky, pith from fruit, thought from words.

Those two things are Marfan Syndrome and poetry. Marfan is a genetic condition that affects the functioning of connective tissue – it can affect the heart, the eyes and joints, but each person with it is affected in very different ways. The most critical of course can be the aorta, which can tear suddenly if put under too much pressure. Quite a few people who didn't know they had the condition have died from an aortic dissection. Being one myself, I'm beginning to feel I can recognise someone with Marfan – they're usually quite tall, very long-limbed, with fingers you'd expect from a pianist. Many of us have some kind of skeletal irregularity. For me, it's a very noticeable spinal curvature. I have what you might call a stareable body.

Most of the time, of course, I live my life and people relate to me as they would anyone else. There is certainly a lot of typically-Australian furtive staring, along with the open-mouthed curious children (and their uncomfortable parents). But now and then, something memorably bizarre or unsettling happens. At a Job Network (which shall remain nameless), I was called in to attend a mock interview – there was a position going and they might refer me for it. I thought it all went well, until I was called back afterwards and told that it probably wasn't a good idea to wear a backpack underneath my shirt. I was too stunned at the time to realise what she was talking about, but I did send off an assertive and educational email afterwards. I've had fundamentalist Christians and New Agers say they can heal me, who keep persisting with their offers even when I say I'm fine as I am. A few people have wanted to touch my back (as if it will feel any different to their own). I've had words and bottles thrown at me from cars.

When I step onto a stage to perform poetry and dozens of expectant eyes are on me, I can't say it's uncomplicated. I suspect I got involved in reading poetry because, subconsciously, I wanted to be in control of how I was seen. I made myself visible on my terms, and spoke words that complicated people's experience of me. One of my early poems begins “I have a hunch” (long pause) “that curvature can be aperture”.

After performing and publishing poetry for over fifteen years now, I know it's not actually about me. It's communal. And poetry holds an incredible power, regardless of its low public profile (perhaps even because of it). Poems have their roots in intensely subjective and often private experience – the inarticulate and compelling bodily reverberations. Like trees, these stirrings reach for the light, for the nourishment and transformation of language. So, we write and publish and recite. And in that public space, the audience or reader's empathy or affinity is activated – the poems cross over from the self to the other, from “I” to “us”, shining the light of language on the bridges that connect us. I have no doubt that poetry and Marfan will continue to lead me into some amazing territory, to meet familiar strangers, new confidants and friends.

Oh, and just so you know, my heart is regularly monitored and is fine. Perhaps for that I can credit poetry, or my other “inseparable”, my partner Rachael, with whom I travelled with to Ireland to perform our puppetry-poetry collaboration “Ambiguous Mirrors”. Which is another (poetic) story..."

Andy Jackson blogs at Among the Regulars.

 

The Undateables - creating awareness or stigma around disability and relationships?

When you have a visible difference or a disability, you may spend a lot of time noticing how society reacts to you looking different to the masses. There's curiosity, exclusion, horror, patronisation, encouragement, inclusion, rudeness, surprise, honesty, fear, ridicule, and great compassion and kindness. I think I've experienced the full range of human reaction living with my visible difference.

While it is so important for awareness about disabilities to be raised, the media often doesn't present visible difference and disability in a positive way. We are the villains (think Two Face in Batman or Freddy Kruger), a person to be ridiculed (remember the short statured person, repeatedly described as a dwarf by the media, who was hired for entertainment then set alight by a footballer on Mad Monday?) or described as 'wheelchair bound'. People without disabilities play us on TV - there's Artie on Glee and Dustin Hoffman on Rain Man, and prime ministers have been known to pat people with disabilities on the head - maybe through condescension or misplaced kindness?

Social media can be just as bad as the mainstream media - with the heroifying and ridicule of people with disabilities. I can think of a lot of social media memes that picture people with disabilities playing sport, and an accompanying caption "the only disability is a bad attitude". There is also the audience reaction that is no longer limited to discussion in the privacy of one's own home - I cringe when I see people clicking and commenting on photos of sick babies on Facebook - there's a sense of nativity that a click for a prayer will donate money for a cure, and also the cruel reactions to the pictures.

I have a great problem with not being in control of my story. That's why I write and speak my own. I want it told in a respectful, non sensationalised, non patronising way. And I don't want my condition to be labeled exploitatively by the media just to draw in readers. Since I've had my blog, it's given me more confidence to tell my story across a range of publications and on a community TV program called No Limits, and also for me to consider approaches from the media to tell my story. In July 2013 I was verbally abused by a taxi driver - and I wrote about this on my blog and for Daily Life. It was also reported (very fairly and sensitively by a journalist on News.com.au. I found it interesting that when I have told my own story, the readers' responses have been far more empathetic than when a story was written about me.

And that brings me to participation in disability related media when you're not in control of your own story.

Last year my blogging colleague and friend Carly Jacobs, who blogs at Smaggle, discussed how the TV program The Undateables had moved her and restored her faith in humanity. At that stage I had not watched it - I was reluctant to do so because of the way I feel about Embarrassing Bodies (I have a big problem with the title and viewers' gross out reactions to Embarrassing Bodies - see my commentary here and here - and I also get frustrated when people defend the show, the contestants who take part, and the viewers who ridicule the show and contestants), but after reading Carly's thoughts on it and asking me what I thought. I watched The Undateables on iView.

(source)

The Undateables shows the stories of people with visible differences and disabilities trying to find love. The participants have many disabilities and visible differences - Tourette's, OCD, short stature, facial differences, Down's syndrome, autism and Aspergers, learning disabilities, brittle bones and paraplegia (in season 2 alone). They sign up to a dating agency and are matched with potentially compatible dates. The program highlights the struggle people with visible differences and disabilities face with self esteem, being accepted and also the discomfort that society sometimes has around being in the company of a person who looks different.

I found it very similar to Beauty and the Beast - The Ugly Face of Prejudice which pairs up self obsessed, vain beauties with people born with disabilities or acquired disfigurements, and helps the 'beauty' do away with the importance placed on image. (I wrote about it in detail here). The premise of both The Undateables and Beauty and the Beast is to showcase the reality (if a reality TV show can be deemed a reality) of the prejudices faced by people with disabilities and disfigurements, and change peoples' perceptions and value of appearance. Both programs were very sensitive, allowing the viewer to feel empathy with the participants (I think anyone could relate to the situations of the participants - both those with visible difference and disabilities and those without), and I felt like they invited less ridicule than Embarrassing Bodies.

(source)

However, I completely disagree with the term 'beast' or 'undateable' used about someone's appearance. It is these labels that create negative perceptions and exclusion towards people with visible differences and disabilities. And I believe the titles create a sense of othering - a divide between people with disabilities or visible difference and those without. The TV shows become curious case studies of how the different live.

Twenty one complaints were made to the British Advertising Standards Board after the ad for The Undateables was aired. Complainants said the title was offensive and derogatory towards people with disabilities, suggesting they were "inevitably dateless and incapable of having a personal relationship".

Raymond Johnson, a participant in The Undateables, told The Guardian that he has received a great response from strangers since appearing on the program (he feels like a celebrity!), and he believes the program has helped change attitudes towards people with disabilities. "It was done really impressively, apart from the title", Raymond said. "If there is going to be a third series, they should change the title", he told The Guardian. A friend of mine, Nelly, also with Ichthyosis, has written on my blog about the positive experience she had on Beauty and the Beast. "[Beauty and the Beast] helped me to get more confidence and I wanted to show people what I had to do keep my self healthy and alive", Nelly said.

It is a relief to me that both Raymond and Nelly have had positive experiences participating in these TV programs. Their experience and watching the programs also shown me that just like with meeting people with a visible difference or disability and forming an initial judgement based on appearance or a label, I need to get to know the program by watching it rather than judging it by title alone. And I encourage people without visible differences and disabilities to watch these shows with an open mind too.

The UK's Channel 4 has made a commitment to disability programming - and these programs have filtered to the ABC in Australia. I hope the Australian media has the same level of commitment to disability programming in the not too distant future.

This post was originally published on Smaggle.

Edit: since I wrote this post for Smaggle, I've been watching season two of The Undateables on iView and have enjoyed most stories featured. At times I do think that the relationships shown developing have been very simplified, and there is a strong tone of "just like everyone else" throughout, but overall, I'm more impressed than I expected to be.

 

Appearance diversity: Scary face at Halloween

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

 

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

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

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

A friend of mine who has a cleft palate said:

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

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

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

(source)

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

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

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

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

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

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

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

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

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

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

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

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

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

Is this OK?

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

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

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

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

 

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

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

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

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

Well I don't...

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

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

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

(Nikki with Richard Dawkins)

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

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

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

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

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

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

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

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

(Nikki with The Cranberries)

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

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

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

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

Read Nikki's blog.

Follow Nikki on Twitter.

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

Watch Nikki on ABC's 730.

Keep up to date with DEBRA on Facebook.

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

 

Things I haven't told you about my Ichthyosis.

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

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

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

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

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

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

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

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

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

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

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