A message to parents on Rare Disease Day.

This post is for Rare Disease Day - 28 February each year.

From the website:

"The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions and millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients."

This is my letter to parents of children with Ichthyosis. Ichthyosis is a very rare condition - affecting 20 people per million. It's no wonder parents are not informed about the condition until their child has it. And subsequently, so often I see their words of desperation, and of guilt. I hope my letter will offer some advice, comfort and reassurance to them. And you can substitute any rare condition for Ichthyosis. This is just the condition I know. 

I have a lot to say about cures, which are often sought for rare diseases - and while I've omitted my thoughts from this letter, I have written about it for Daily Life.

And this letter is as much for my parents as it is to all the other parents out there. Much of the advice I wrote in my letter is based on my parents' positive behaviour.

Dear parents,

I know your world has been turned upside down with this diagnosis - the great unknown. It's a whole new world with ointments, infection risks, weight gain difficulties, pain and skin. So much skin.

Maybe you're grieving a life lost - and that's expected, that's ok. But a life hasn't been lost. That little life you have in your arms is a new challenge, but also a life full of happiness, fun and achievements to be celebrated. As an adult patient with Ichthyosis, I want to tell you that things will be hard. But things will be ok. Good or great in fact. And who knows what life will bring - for any of us - but I recommend taking things one day at a time.

Please never to blame yourself for your child's genetic condition. You don't need that added stress. They don't either. You probably didn't even know you carried the gene. Don't ever blame yourself. I have never blamed or resented my parents for passing on the gene. It's not something they could control. People ask me if I am angry at my parents - and I am always saddened by this question. No. They did the best they could when an unexpectedly unwell baby came into their lives.

Maybe your child's diagnosis was made sometime after birth? I guess life doesn't have to change or get harder with this diagnosis - because you and your children have not known any different, and this diagnosis is just a word. It's not defining or a curse. What it does mean for you is that you can get some treatments specific to the condition, which might be a big help.

People will stare and make comments. Sometimes their comments will be rude. Don't take these as a reflection on your child's appearance or on your parenting. They're a reflection on the person staring and making the comments. You can give them an explanation, but you don't even owe them that. It will be tiring, and you will get frustrated. But sometimes the curious (polite) encounters will spark up an interesting conversation, and maybe even be the start of a wonderful friendship.

If you are struggling with guilt or feeling overwhelmed with the daily treatment regime, see a counsellor - it's good to talk to someone.

And on the topic of talking to someone - emotional support is just as important as medical support for a condition like Ichthyosis. The feelings from isolation and bullying can be as painful as a skin infection. Ensure that you have a team of physical and mental health specialists - for your child and you.

Support groups are fantastic (and something that my parents and I never had until recently). But sometimes they can be overwhelming - full of comparisons of who has it worse, resentment for those who have it 'better', guilting others for their choices to have more children with Ichthyosis (or not),  and all sorts of recommendations. Don't fall into that trap - comparison is the thief of joy. Remember that a treatment that's working for one patient may not work for another, and so don't take treatment recommendations as gospel. Talk to your doctor before trying something new. And listen to other patients with the condition as much as you listen to other parents - after all, we've lived with it and know it firsthand. And never guilt others for our choices or happiness - we're all in this together.

Know that there's more to your child than their condition. They are, or will be, smart and funny and beautiful. I bet your little one is the best thing that happened to you. Encourage them to read widely and talk to lots of different people and to take every opportunity presented to them - even if it means they're (and you're) a little out of their comfort zone. Don't think it will be too hard or impossible because of their skin or the way people may react to it.

Consider the impact of your comments complaints about your child's skin, creams or lengthy care regime. While you might think it's insignificant parental complaining, your child may grow to become very self-conscious of the 'mess' they make because of their skin or creams left on surfaces, or the time you're taking to care for them. Be especially mindful of this if you're complaining online - that's part of their digital footprint too.

Be proud of your child, show them that you're proud, and show others that you're proud of them. That's the best gift that you can give them. When you show your child you're proud, you give them pride.

I wish you and your child all the best. And I thank my Mum and Dad for instilling these values, confidence and pride in me. You are ALL doing a great job.

Much love, 

Carly

Diversity and inclusion in Eurovision

My friend Jason who blogs at Don't Boil the Sauce is a Eurovision fanatic. He has a brilliant series called Chow Down to Eurovision - where he shares recipes from the competing countries in the Eurovision Song Contest. When I saw him on Sunday, he was nursing a brand new tattoo - the Eurovision logo on his forearm.

He invited me for a chat about Eurovision, diversity and inclusion. We talked about how this year's selection includes a Finnish band called PKN, whose members have Down Syndrome and Autism, and last year, Conchita Wurst won.

As you can see from our behind the scenes photo, there was a lot of laughing during the filming. Here's our chat.

You can follow Jason on Facebook and Twitter. 

Maya is a seven year old who is excited about the Australian Ichthyosis Meet. "I could do with some more friends like my sister."

The Australian Ichthyosis Meet is now at capacity - with 71 patients and family members registered. Sponsors have come on board (I will announce those soon), and many people have donated money - I am so grateful for everyone’s support. Thank you! I am also excited learning about who is attending the event, and have asked some of the attendees to write about why there looking forward to coming.

Maya is a seven year old who is excited about the Australian Ichthyosis Meet. Her little sister has Ichthyosis. On describing her sister, she said "I could do with some more friends like that."

I met Maya’s little sister Matilda when she was just a snuggly five month old. Matilda and her Mum were at the Royal Children’s Hospital in 2013, and I visited them to offer support.

I am so excited they’re coming to the Australian Ichthyosis Meet in May! Maya will be there too - she’s so excited about the meet. Maya wrote a little message about her excitement - she’s a wonderful big sister. So cute! (Note - unlike all other guest posts published on this blog, I didn’t edit Maya’s for spelling and capital letters. I wanted to leave it pure, and I love that her imagination is captured through words.)

"My Name is Maya , i am 7.

when my Mum told me we were planning a trip to melbourne in May , and i was actually going this time . i was exicited, i like the aquarium in melbourne but my mum is not always able to take me when they go to the hospital, incase they get stuck there.

At first i was unsure what an Itchyosis conference was, i know what Itchyosis is my little sister has that , its apart of her.

So i had some questions to ask my mum and she let me read showed me some of Carly's blog post online. Matilda my little sister met Carly when she was a baby. Carly is matilda's friend.

then i understood , i will be able to meet other big sisters like me , who have little sisters or even big sisters or all grown up ones with Itchyosis. I hope there nice , i'll try to be nice.

i hope they will be able to tell me about some of the inside games they play , matilda is a bit sick of our current inside games and i'm running out of idea's.
i've never seen anyone that looks like my little sister , most of the time she just looks wrinkly and red like you've been in the bath too long , but sometimes shes really sick. Most of the time shes really funny. Smart and runs superfast and she eats all my crusts and vegetables when i dont want to eat them.

i could do with some more friends like that.

i am looking forward to comming to Melbourne in May from Tasmania , to meet new friends from Families like ours."

If you would like to donate to the Australian Ichthyosis Meet, you can do so via Go Fund Me. 

Appearance Diversity: Jess's story. "People still stop on the street to stare at me, and to make comments about my physique."

I used to mentor this amazing young woman at the hospital. Jess is one of the smartest, caring people I've met. She is an incredible writer and I am so glad she's shared her appearance diversity story today. Jess blogs at Kisses from the Fight - you have to go read more of her writing. 

I took her to see Rick Guidotti in 2012. When he took her photo, she just blossomed. What I didn't realise that day was the impact that Rick's presentation had on her. It was a combination of seeing others with her condition and Rick's way of making everyone feel beautiful that made her blossom.

Jess has Marfan Syndrome. February is Marfan Awareness Month  - so it's very timely she shares her story. Meet Jess. 

“In other words, I would be giving in to a myth of sameness which I think can destroy us”
~ Audre Lorde.

"Had you asked me, I would have given in. I would have pleaded with you.

Allow me the gift of sameness. I do not share the sentiments of Lorde; it is difference that will be my undoing.

But that is the uncomfortable truth of my life. The premise of being someone like me is that you must never be granted a choice in the matter. I am but an anomaly, a lack of intention lovingly spat by my parent’s genomes. One in five thousand; these are the chances of being someone like me. And by being someone like me, what I really mean is that I am the person nobody else wants to be.

My name is Jessica Marshall. I am 22 years old and studying Psychological Science. I live in Ballarat and I am Mum to a golden retriever named Willow, the love of my life who is all paws and no common sense. My eyes change colour in the sun, and I cannot sing. 

I also happen to have Marfan Syndrome.

Marfan Syndrome is a genetic disorder which affects the connective tissue. Blood, bone, skin, muscle and organs lay splayed and wanton, teasing for the trauma that is a direct consequence of having faulty Fibrillin. (For those that are not medically minded; Fibrillin is the glue of the body. It’s kind of a big deal).

I am the elastic girl, the Gumby, the walking rubber band. Marfan Syndrome affects every person differently. There are different mutations, different severities. It is thought that I have my own mutation, licked and stamped with my own unique fingerprint. I could explain the science behind it, the reduced life expectancy, the aortic dissections, the 6 foot plus heights and bones where fat should rest. But you would be none the wiser as to the reality that is my life. Instead I shall tell you the truth.

When I wake in the morning I spit my lungs into the basin and scrub the mucous down the sink, a consequence of multiple pulmonary nodules (Have you ever heard a more attractive description?). I will place whatever joints have dislocated in the night while I slept into their respective hollows. Tablets will be swallowed in tens, and I shall try to stay awake past ten am. Uni classes will be attended and I will ask someone to open the doors. There will be three rests as I walk to my car and finally when it is time to rest for the day, I will gasp as the blood regurgitates backwards into the valves of my heart.

And so it goes.

When Carly initially asked me to write a piece for her blog about appearance diversity, I sat frozen, fingers hovering above my laptop keys. I did not have the right. What six foot, size six blonde truly did? I imagined you, the reader, shaking your lobes from left to right. You would tell me. Find another story, another piece. This is not yours to own. I told Carly this and she replied “I remember what you said to Rick Guidotti”.

Two or so calendars ago I attended The Other Film Festival with Carly, and during the day I took my seat along with many others to listen to a presentation by Rick Guidotti. As Rick’s slideshow presentation of his work filled the screen, I began to realise that I was watching a slideshow presentation of myself. Of course I wasn’t, not really. But it was the first time that I had ever seen portraits of other people with Marfan Syndrome.

And they were wonderfully and beautifully flawed.

At the conclusion of the presentation Rick encouraged people to speak. Sick and mucous nestled in my mouth in equal measure, and my hands shook as I clasped onto the microphone for a false sense of courage. It had taken me 20 years, but it was time to tell my story.

There was the day that I walked down the street, fourteen years, blue shorts and matching eyes. A group of males wound down their window and for a moment I allowed myself to believe that they would wolf whistle. Instead they threw a milkshake at me and called me Spider Woman. 

High school was a combination of having “Anorexic Slut” shouted at me across the locker rooms and being told by friends not to cross my legs because I looked disgusting.

My proud parents sat through dance concerts (In which I showed minimal talent, but they beamed regardless) and were confronted by other parents wanting to know why they didn’t feed me properly.

There were the doctors who accused my parents of abuse, and threatened 9 year old Jess with a nasogastric tube unless she started eating properly. 

There was the day that Daddy took me to the beach and I wore my first ever bikini with pride. An entire jetty came to a standstill to point at the bones within their midst. As I sobbed, Daddy told me that when I was 18 I would be paid thousands to walk catwalks. Two years later I was in a wheelchair, my catwalk forgotten.

There was the Uni class I walked into to find the entire class discussing my body, too much limb, not enough flesh. I still remember how hot my cheeks felt.

I could go on of course, fixate on all that I was led to believe. But years in an Eating Disorder program have helped me to understand that their thoughts and opinions never mattered quite as much as my own. The irony that their comments about my emaciation led to me developing an Eating Disorder is not lost on me. Much of society encourages the idea that despite being different, we are all the same, and that we are all beautiful. But this is not true. I am different. I am the mutant, the anomaly, the woman who truth be known, was never societies idea of normal, nor beautiful. I do not need to be the same, and if I were to go back and speak to thirteen year old Jess who sobbed in front of her own reflection, I would tell her that she did not need to be beautiful in her sameness, or beautiful at all to make it in this world.

I am in my fourth year of University and have a GPA of 6.8 out of 7. I have founded a not for profit organisation which supports adolescent girls living with Chronic Illness. I date, I make love and I fall out of love in quick succession, not always in that order. People still stop on the street to stare at me, and to make comments about my physique. My condition is progressing, and I may never have children. I will be monitored for the rest of my life to try and predict, and prevent, my aorta tearing in two. I spend Saturday mornings drinking coffee at dog socials, and I do not remember normal.

Perhaps you are 13 year old me. Perhaps you are 40 year old me. Chronology aside, the hot shame of believing that you are somehow less because of appearance diversity feels all the same, regardless of the age of your bones. You may not be sameness and you may not be beautiful.

Look at this photo of me being photographed by Rick Guidotti.

Now tell me that you still want sameness."

Click here for more information about Marfan Syndrome. 

Educating doctors about patients' disabilities creates greater compassion.

Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.

I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).

I grew up in a small town with one dermatologist. He had very poor bedside manner and made some terrible assumptions of the way my parents looked after me. Needless to say, I was transferred to a paediatrician very quickly!

And like many parents of children with disabilities, mine were told to prepare for the worst. I was diagnosed correctly with Ichthyosis at birth. At first they were told I would be ‘better’ in a few weeks. And then when it was apparent my condition was worsening, they were told that they were not looking after me. At seven months, I was bundled into my parents’ arms - they were told to take me home to prepare for my death. There didn’t seem to be much talk of what I could achieve with the right medical treatments and support.

And so I lived past seven months, reaching milestones in my own time. Then I surpassed seventeen months, seven years, seventeen and twenty seven. I am still here today.

That doctor did not see potential. He saw a diagnosis, a prognosis, possibly an outcast and a life to grieve over. I proved him wrong.

Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts. These friends are university educated, in relationships and some have children. And a friend who’s a parent was told that they should be preparing for the worst after their child was born with Ichthyosis - even advised to start preparing for a funeral service. Her little girl is now six.

At Stella Young’s memorial, her close friend Bryce spoke about how the doctors told her parents to start grieving for the child that she wasn’t when she was born. They never grieved, they had not lost anything. Like my parents, they gave her the best possible life, instilling pride through being proud, never doubting her abilities. Bryce said Stella's parents "didn't see disaster when people around them could see little else", and "She was the eldest daughter and sister of a family that would get on with the job of living." They gave her the resources to succeed, a name that means star, and she outshone those doctors’ expectations.

The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient. Perhaps because of the medical model of disability, (where disability is viewed as a problem that belongs to the person with a disability), doctors only see a diagnosis, and not a person. They may not believe a patient with a disability is capable of being educated or empowered about their own healthcare. Yet if doctors studied the social model of disability (that the physical and attitudinal barriers are a a cause of society and can be removed), they’d have greater training and compassion for patients with disabilities.

As I’ve mentioned previously, the Washington Post featured a great piece about the low expectations of doctors on patients with disabilities.

Leana S Wren writes: 

"While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.”

NPR raises the same issue:

"More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.

Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity."

And the New York Times cites how little training doctors had in managing patients with disabilities. Pauline W Chen MD writes of doctors being unaware of how to manoeuvre patients in and out of wheelchairs safely and with dignity, lack of physical access to medical buildings, and the lack of disability training doctors receive. In some cases, doctors didn’t complete the medical exam on the patient because they didn’t have the correct supportive equipment nor a care plan to safely assist them.

It’s this extra care - the physical care and the social care - that is needed to empower patients. Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences. 

(On a side note, sometimes I go to hospital with a non-skin related ailment. A sore throat, for example. And the doctor is so focused on my skin, sometimes marvelling at the medical miracle sitting before them, that I feel like I am a rare patient coming to life from their textbooks. Really, I just want a doctor's certificate and a script for antibiotics.)

I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet. She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.

And she told this junior doctor how lucky they are to have me as their educator. What a compliment.

I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.

Follow me on Facebook, Twitter and Instagram.

This post is for 1000 Voices Speak for Compassion. On 20 February, 1000 bloggers and video-makers from all around the world come together to speak for compassion. 

Why I post photos of my every day style

I’ve been making a big effort to take photos of what I wear these past six months or so. Usually the photos are snapped on the run. Adam takes a couple of photos of me and he’s done, but if a girlfriend takes the photos, she’ll take quite a few (a recent lunchtime photoshoot saw my friend take 30 photos of my outfit!). And then I choose the best ones and upload them to Instagram, adding the #everydaystyle hashtag.

Nikki from Styling You started the #everydaystyle hashtag over a year ago - it’s for people to share what they wear every day in a supportive community. It started as a request from a reader to show us what she wears while working from home. Nikki says the challenge helps her get out of a style rut.

Nikki told me:

"What started as a reader request to see more of what I wore every day – not just for special occasions or for blog posts – evolved into a personal challenge for me.

I might blog and advise people about fashion and even published a book where I help others – Unlock Your Style – but I have wardrobe crises and fall into ruts just like the next woman.

What has saved me from falling into those ruts over the past 15 months has been Styling You readers. They've made me accountable. Just the knowledge that I’m going to be photographing and uploading what I’m wearing each day has made me really think about what it is I’m going to wear.

I’m all good when it comes to dressing for certain events and occasions but the everyday stuff? That’s where I can easily fall into a rut.

The main reason for this is that I work from home. By myself.

I could easily and happily stay in my pyjamas, disguised as loungewear. Ugg boots on, no makeup, no accessories, hair pulled back and not attended to.

And that would be ok if I felt ok doing it.

The first couple of days are usually fun but then I find that my mood starts to drop in line with the amount of effort I haven’t taken in prioritising myself.

When I do prioritise myself – getting to yoga, going for walks, eating well, drinking less AND making and effort with how I present myself to the world – I feel good.

That feeling of good might not take away a crappy day or a help you forget a nasty comment but it sure does help."

It's so great that Nikki has fostered an inclusive community too - the #everydaystyle movement includes women of all colours, sizes, abilities, occupations, nationalities and fashion tastes.

I love fashion. I always have. But I have never been as confident showing off my outfits as I have in my 30s. I hardly have any photos of me as a teenager - maybe that’s because of the pre-digtal age, but I think it was that I just didn’t feel confident enough to be in front of the camera. I worried what people thought, and I just didn’t think people like me were allowed to show that they enjoyed fashion or took pride in themselves.

And then, with blogging and Instagram, my confidence grew. Because people did enjoy what I wore. I don’t take part in #everydaystyle every day, but I do try to put one or two posts up a week. Sometimes it’s what I wore to work, other times it what I wore to dinner. My every day style is colours and layers and dresses and affordability.

While it might seem narcissistic to take photos of what I wear, it’s given me lots of confidence. People are seeing the style, they’re liking my style. Generally they’re not asking why I look the way I do. Instead they’re asking where I got my dress or shoes from. People’s comments lift me up.

And I get lots of inspo from other fashionistas participating in #everydaystyle. Two of my favourites are Vanessa from Style and Shenanigans and Mama Stylista.

Dressing well makes me feel good about myself. Sometimes when I am feeling really sore and not wanting to face the world. putting on my favourite dress helps me just get through the day. It really is amazing how something so simple can help me feel a little better.

Look out for an upcoming blog post about the clothes that make me most comfortable with Ichthyosis - and there’ll be lots of suggestions from others with the condition too.

Check out my #everydaystyle on Instagram.

Accessible fashion means showcasing disability on the catwalk AND providing disability access and awareness in stores.

Last week, 30 year old American Horror Story actor Jamie Brewer walked the catwalk at New York Fashion Week. Jamie is the first model with Down Syndrome to feature in NYFW. As Daily Life reported, Jamie said she hoped to show other young women that they can do anything in life. Just look at her smile!

It’s important that children and young people with disabilities see themselves represented on the catwalk. And Jamie's goal also demonstrates that it’s important that children – and adults - with disabilities see themselves represented in a wide range of occupations – operational, leadership, academic, public service, and retail roles.

Jamie modelled Carrie Hammer’s clothing line - which has the tagline ‘role models, not runway models'. Hammer aims to “empower women everywhere”.

(image credit: Marc Hall)

Carrie says "Where our beauty lies is in our accomplishments and our differences- it’s time to celebrate them!” She told me that she wants all women of all abilities to feel like they're beautiful. Her website features a diverse range of women modelling her workwear - including women of colour, curvy women and a woman with a disability. A person with a disability modelling workwear validates aspirations to be a part of the workforce.

By Jamie having her moment in the fashion spotlight, it shows others with Down Syndrome and all kinds of disabilities that they are important, they are worthy of designer fashion and they have permission to take pride in how they look.

Katie Driscoll, founder of Changing the Face of Beauty – a campaign to see retailers include diverse models in their advertising, welcomes Jamie’s modelling debut. She and her daughter are pictured with Jamie, below.

“I think it is important that everyone see themselves represented in the media all the time”, Katie says.

“My daughter is part of the largest minority in the world yet the least represented in the media. The more representation there is the more confident she will feel. I want her to know that she is seen and she matters because she does.”

(source)

This is a celebration of diversity.

I love fashion and I want it to be accessible. Jamie - and other models with disabilities is a wonderful start. But accessible fashion extends to access into the store, spacious and supported changerooms, and equality and non patronising treatment from sales assistants.

Stella Young and Madeleine Sobb appeared in the Australian Human Rights Commission’s video about clothing store accessibility in 2013. They spoke of how it’s assumed that people with disabilities aren’t into fashion, and they explained the difficulties of access into stores, and also the difficulty of using change rooms. Madeleine lodged a complaint with the Human Rights Commission after sales assistants denied her from taking the clothes home to try on, and return them if they didn’t fit.

Stella Young often tweeted about venues and chain stores having poor wheelchair access.

The new @MACcosmetics store on Chapel St has an in-store DJ, but no wheelchair access. #fail #everydayableism pic.twitter.com/4XAuHcIbal
— Stella Young (@stellajyoung) October 10, 2014

Through her online activism, she managed to change accessibility standards at TopShop, which included disability training for staff. I believe that Mac Cosmetics didn’t heed her request.

While I have very few accessibility needs, I do sometimes find I am looked down on by sales assistants - perhaps assuming I don’t want to or shouldn’t dress well because I look different. And I also find trying on clothes very hard - because the constant scraping of them against my skin hurts, and I worry I will soil them by leaving flakes behind. There’s been times when I’ve just bought the garment because I left skin on it!

My friends have told me about their challenges with fashion - explaining the physical and attitudinal barriers.

Leisa Prowd, who has achondroplasia (dwarfism) says “they just don't make stunning women's evening wear - or anything women's fashion for that matter - in a children's size 10!”

She laments stores hanging clothing so high that only people over 6 foot can reach them (me too!). And she’d like to see more sales assistants around to provide help with reaching clothing. She also said the door gap on change rooms is too big. "Whilst they may expose the average person from the knee down you can see all I've got from the navel down sometimes!", she says.

The patronising comments and assumptions about people with disabilities loving fashion is another access barrier. Phineas Meere tells me he is often embarrassed to ask for help from sales assistants. “ I’m far from a fashion plate, and a big guy, so shop assistants look down at me.”

Fashionista Michelle Roger, who has dysautonomia, recalls similar experiences around sales assistants’ attitudes toward people with disabilities.

"Its also the attitude of what a person in a chair or with a stick should wear:, Michelle says. "People seem taken aback that I should wear a mini-skirt and high heels in my chair, or that I frock up at all. Or I get the patronising "aw isn't that cute" type of comments.”

Michelle has to wear compression stockings - and she opts for brights over beige. "For me fashion has always been part of my self expression. Just because I am sick I shouldn't have to put up with bland aides”, she says.

"In the end I am a person who loves fashion who just happens to be chronically ill and disabled. Damned if I'm going to live my life in beige and grey, sick or not. It's colour and pattern all the way!"

However, the accessibility barriers are removed with online shopping. Online shopping makes purchasing clothing easier for people with disabilities who are unable to leave the house - with retailers delivering straight to their door, and there’s the option to return the clothing if it doesn’t fit. Friends have told me what a big help this is.

Fashion has come such a long way with respect to diversity. Seeing models like Jamie Brewer on the catwalk is progress. Carrie Hammer has it right with her view for inclusivity in fashion. Seeing mannequins depicting disabilities in stores, and clothes to accommodate non-normative bodies and movement restrictions will be further progress. The fashion world can’t get complacent by thinking one model with a disability in one fashion show is enough. More designers and retailers need to include people with disabilities. And this needs to translate from the catwalk to the shopping strip - with proper access to stores and disability awareness training for staff.

Let's shake things up and normalise disability. Let's ensure this access and inclusion is on the ready to wear rack in all stores.

Valentines Day. Contentment.

I marvel at the compassion my love has for me. He never complains about how needy I must seem, and is a beautiful companion - nursing me when I am sore. He lets me sleep the pain off, and cooks dinner when I need to elevate my legs. He doesn’t complain when my clothes make his oily or when I ask him to shave because his bristles hurt my face. My favourite place is inside his hug.

I was reading Michelle’s post about love and illness. She writes of how her husband cares for her in the height of illness. She describes love as "a steady, gentle presence in the midst of pain and illness.” And that is so true. While Michelle’s illness and mine differ in symptoms and severity, I understand what she writes. Adam shows his love through the occasional present, but it’s the supportive gestures that mean the most. When he hugs me gently asking if I am sore, when he holds my hand during a blood test, or kissing me on the face before I’ve put my face on. They are the best times.

We held hands as we walked through a regional city today - a Valentine’s Day escape. A man yelled at me, asking if I got too much sun. When I didn’t answer him, he yelled at me again, and then Adam - trying to get his attention by calling him “hey young man”. Like me, Adam kept walking and didn’t look back. He said he never knew that sort of thing happened until he met me.

‪Every night before bed, I bang the pillow on the mattress, shaking the skin out of the bed and telling my fiancé, "I bet you never thought loving someone could be so complicated”. Some people affected by Ichthyosis say their loved ones call it fairy or angel dust. Such a nice thought.

We are at a hotel now. I’ve changed into new pyjamas and am under the luxury covers of the hotel bed - my skin very sore after a day out and a shower. He doesn’t seem to mind that we are just resting tonight, reading magazines, eating cheese and wandering down to the cafe later. It’s lovely being this content. 

Happy Valentine’s Day, my love. I am so glad we met.

Ichthyosis awareness: everyone’s an expert - Tara’s story. "I don't think anyone has any idea unless you live it."

As mentioned last week, it seems that when you are a writer or have a rare condition/different appearance, everyone’s an expert - strangers force their opinions and ‘remedies’ onto you. I’ve been chatting online to a wonderful Canadian woman called Tara for the past three years or so - her son Myles has Lamellar Ichthyosis. Last year, Tara wrote about the intrusion she faces, asking an online support group about what she should do. She's given me permission to republish conversations about what happened and how she responded, and of course, permission to share some photos. I really wanted to share Tara's experience, because as she's written, "I don't think anyone has any idea unless you live it."

When I tell people about some of the things said to me about my skin, I either get horrified reactions or ones trying to see the good in the situation, like saying "they just meant well" or "you should be prepared for the questions" or "you should just educate them". But they have NO idea of the intrusion faced. I really hate it when people project their beliefs onto us. People need to accept Ichthyosis is genetic - not the work of god or the devil or past life or any other higher power.

Sadly, the intrusion and ‘expert’ opinions dished out isn’t limited to me. So many others are on the receiving end. And I imagine it must be so hurtful for parents, as often it’s a subtle comment on their parenting skills. Another friend told me that when she was a young mum to her daughter with Ichthyosis, rumours circulated in her family that she had used drugs during pregnancy, and she sometimes encountered people yelling at her about burning her baby. People need to mind their own business. 

So back to Tara. I love how she sees the world, how she sees through the bullshit, and won’t accept this sort of intrusive behaviour towards her or her son. 

Last year, Tara, her husband and son went out with some friends on a pirate ship adventure. She posted some fun photos on her Facebook, tagging her friend in the photos. And then a friend of her friend decided to write to Tara with some ‘expert’ advice. Absolutely shocking advice, really.

Here’s her story. 

"Ok are you ready for this one???? I posted some pics of us from the Pirate Ship adventure and tagged a friend of mine as his Mom was in some of my pics - this is what a "friend" of his felt compelled to Private Message me. I am still in shock and don't quite know how to reply. I must reply, I know, but aside from a few profanities and insults, I am at a loss as to what else to say. HELP!!!"

"Hello There, my name is Jody. We have a couple mutual friends in common so your son's picture popped up on my feed and well it was so exciting to see. I know this may sound crazy and if it is too much you can erase this and move on…….but your son was a reptile in his last life. Funny how those things show up in this lifetime but it does. 

The reason I know this is because my stepson was a lizard in his last life and it was showing up in this life. Creams, doctor visits, exclusion, uncomfortable in his own skin he was finally willing to allow me to perform the healing modality that I am certified in called Matrix Energetics. Our session lasted about 5 minutes and in that time I had a vision of a lizard on the beach which meant nothing to me but then I could feel that the lizard was my step son. So I told him that he was and we laughed a lot which was a great release in itself and then I told him he could let it go now in this life. I explained that it is part of his DNA and it will always be apart of him…..often reptiles don't want to give up their armour because it was their protection at one time. That was the end of the session. 

The next morning after years of pain and suffering his skin was clear, soft and comfortable……and it is to this day. I bet your son loves bedtimes stories so maybe you could tell it like a story about a boy who no loner needed his armour….something like that. 

This is only a suggestions and by no means am I saying that there is anything about your beautiful child that needs to change at all. I have just been very guided lately to share info for the fun and playfulness of a happy life. Jody"

After some input from the Ichthyosis community, Tara gave a kick arse response:

"Hi Jody, 

Well you are right about ONE thing. You do sound Crazy and not just Crazy, rather BAT-SHIT crazy. 

While I appreciate that some people believe in reincarnation, I take complete offence to the fact that you have taken time out of your day to tell me that my one and only son was a reptile in his past life. 

You are insensitive and obviously a healer of NOTHING. If you were a "healer" you would know that it is wrong for you to give unsolicited advice to anyone. You are not fun, nor playful and I am certainly not feeling "happy" right now either. Rather your comments, beliefs and approach has left me feeling quite the opposite. 

My son was born with a rare genetic skin disease called Lamellar Ichthyosis and if you care to educate your self and stop being a lunatic for one moment, you should really read this.  

After much thought and consulting my Ichthyosis family (for a good laugh and to share how utterly off your rocker you are) I decided to reply to you in hopes that if you EVER see a child or person with Ichthyosis that you will stop your ignorant self from ever saying such a horrible thing to any one again. I will not be continuing this conversation and have exercised my right to Block you from further contact. Oh and I do hope that in your next life you come back as a kinder gentler human being, because you blew it in this life. Blessings and prayers. Cuz you're going to need it."

Tara then thanked the Ichthyosis community for their help:

"Thanks peeps and I really appreciate all your comments. It helped me breathe a little and not fly off the handle (which I would have done in a past life- ha ha ha). It was my gut reaction and there is something to be said for letting your emotions quell before you open your mouth. Something Dear Jody obviously has never thought to do. I want to sincerely thank you all from the bottom of my heart. I did not share this story with any of my non-Ichthyosis family as I just don't want people to pity us. I hate pity. But now I am tempted to, just to show them the absolute extreme of what we put up with from the ignoramus of the world and maybe, just maybe open their eyes to what we have to endure daily. Not for pity but perhaps to make them think. I don't think anyone has any idea unless you live it. blessings and hugs to you all."

And she told me this:

"I am aware that the world is not filled with geniuses but I did believe that it was filled with people that were a little more compassionate because people sure do pretend to be. In the past 7 years, I have heard a lot of strange theories, diagnosis, advice and downright intrusive behaviour that would never be mistaken for compassion. People for the most part are stupid and this woman certainly proves that without a doubt.

Now that may be a little harsh, but I hate that people say "oh well their just curious" bla bla bla - well I am curious about how the whole transgender thing works to, but you don't see me walking up to a transgender or sending them PM's asking about it. There are some things that are just no others business.

I think what bothered me the most about her post is that it wasn't a gut reaction from seeing Myles in person as in she spoke before she thought. Rather she wrote out a whole message to me, had time to reread it, think "hmmmm maybe I shouldn't do this, or perhaps this is just not my business".....but nope - she read it and thought "Oh perfect, this is great, I am going to send this complete stranger this message and I am going to feel good about it." that's where the ignorance and just plain stupid comes it. As you can see, I am not forgiving toward stupid. If she was an inbreed, I would understand, but based on her photos and credentials she seemed highly schooled. therefore no excuse.

I don't want to offend anyone, but I am a little tired of being offended."

If you'd like to learn more about Ichthyosis including my story and and stories from other people affected by Ichthyosis, click here.

Six+ podcasts I love.

I’ve been listening to podcasts for years. Maybe since 2005? I love them. I listen while I am writing, before sleep, and sometimes if I am doing a repetitive task like spreadsheets or transposing minutes. I learn so much, and hear about a lot of interesting people doing interesting things. (Also, I'm sitting in a giant gumnut pod up there!)

What is a podcast?

A podcast is a portable, on demand (POD) show. It might be a recording of a radio show, or a show recorded only as a podcast for download, or a playlist of music (like running podcasts).

How to listen to podcasts

Some podcasts can be downloaded (saved and/or streamed) from program websites. Many are linked to radio programs and can be streamed through their websites.
You can also download podcasts through apps on your computer, tablet or phone. I listen to mine on my iPad and iPhone. You can download through iTunes (this is how I listen to them) or other apps such as Stitcher. A list of 10 great podcasting apps for many operating systems can be found at Tom's Guide.

It seems podcasts are becoming more popular now - SO many friends got into Serial - they perhaps didn’t listen to podcasts before? I might have been the only person who didn’t get into Serial. I drifted off every time I listened.

But here are some I enjoy.

This American Life

This American Life features two or three true stories narrated or discussed. It’s enthralling. My two favourite recent stories were the Batman episode (which is also on Invisiblia - a TAL spinoff) and an episode about trolling.

Batman was about the low expectations people place on those with disabilities, and how if we give the disabled a chance, they can achieve.

From the episode:

"[He] began to wonder if maybe, just maybe...low expectations for what blind people could do was in some way actually limiting the blind people..."

And the trolling episode featured one of my favourite writers Lindy West who talked about how she confronted her most horrible troll. So interesting. Trolls walk amongst us.

TedTalk Radio Hour

The TedTalk Radio Hour features excerpts of TedX Talks, grouped into a theme. It's meaty stories in bite sized chunks.

I recently listened to one episode about secrets, where the founder of PostSecret talked about how receiving the secrets in the mail every day is like Christmas.
The NPR podcasts are fantastic!
And so are the ABC Radio ones!

Life Matters

Life Matters on ABC Radio National features fantastic conversations about current issues, hosted by one of my favourite presenters, Natasha Mitchell. I was so excited to chat with Natasha on Life Matters two years ago.

Wilosophy

Hosted by comedian Wil Anderson, Wilosophy is a podcast featuring conversations with Wil’s friends who are doing great things. As the name suggests, they talk about their philosophies. I love the length of the podcasts because it allows Will and his interviewee to get into a lot of detail. The chat he had with Kurt Fearnely was fantastic. Wil is empathetic, intelligent and curious. I’d LOVE to be interviewed by Wil!

The Osher Gunsberg Podcast

This is another conversation style podcast. I do enjoy this one because his mantra is to talk to people who work at doing things they really love. Again, I’d love to be a guest. I LOVED hearing the Darren Hayes podcast - I remember being immersed in it while I was in the Chicago hostel. (Also, Darren had a great podcast last year and a new one this year - tune into He Said He Said.)

Conversations with Richard Fidler

This one from ABC Radio features conversations with well known and not so well known people. I love Richard’s interviewing style - he asks personal but never uncomfortable questions that put the guests at ease. I was recently engrossed in the conversation with missing person's advocate Loren O'Keeffe, and I also loved appearance activist Robert Hoge's chat. Richard is another person I'd love to talk to.

Notice a pattern here? I love to listen in on conversations. I love hearing about people’s lives. I love a chat.

And there’s plenty more that I love! KCRW Good Food, American Splendid Table, RadioTonic, RN 360, Background Briefing, The Smart Passive Income Podcast, Reply All, So You Wanna Be a Writer?...the list goes on. I am such a podcast nerd!

How to make a podcast

You can make basic podcasts on SoundCloud. I made one last year as a part of the Blog With Pip course. I made a list of things to talk about and just ad-libbed when the record button was on. I shared the link on Facebook. But I much prefer more professional sounding podcasts, and you can do this with microphones and sound recording software. The ABC has a more comprehensive guide to making podcasts if you want to explore further.

Podcasting is really on my list of things to do - I love them! Maybe in 2016.

Do you love a podcast? What do you recommend?

This is the lucky country. So why does my friend earn $30 on a good day and have to find $16,000 to fund her wheelchair?

This is the lucky country.

My friend Felice likes rock music - that photo was taken at the Motley Crue concert. She's also a fan of Metallica, Henry Rollins and Morrissey. She loves eating great vegan food, dancing, being a groupie, 80s movies, and the very attractive Australian actor Simon Baker.

Felice works eight hour days, six days a week selling $6 Big Issue magazines. From each sale, she receives $3.

Three dollars. 

She tells me she sells 10 magazines on a good day and two on a bad day. So her daily income teeters between $6 and $30. She said if people don't want change, she can make a bit more money.

She has a disability, and employment options for people with disabilities are limited by physical access and attitudinal barriers.

My friend receives support from disability carers - and her social life depends on when and if the carer (and accessible taxi) turns up.

In March she will recommence studying Criminology/Psych Science online. She says she has attempted tertiary study four times but had to withdraw due to in class support being ceased or reduced each time.

We’ve performed at the Fringe Festival together - she’s an amazing writer and recited her 10 minute performance from memory five nights that week. In her performance, she talked about how hard it is to find and keep love, and how someone she loved kept her captive in a hotel room while they ‘holidayed’ in New York.

Felice also needs a new wheelchair - to allow her to have freedom. This wheelchair costs over $24,000 - she must find $16,000 of that herself. While working six days a week for eight hours a day in all types of weather. Earning $3 per magazine she sells. Her work days will be cut to one per week as she returns to study. 

Can you even fathom that?

No one should live like this. It’s Australia and it’s 2015. When I ran this post by Felice, she said " I struggle to feel worthy at times.”

These are the issues we need to care about. Not what a singer wore to the Grammys or who got voted out of the celebrity jungle or the release of the latest iDevice.

Politicians, employers, disability care providers, everyday people: take note. This is what we have to give a damn about - people like my friend Felice - and many, many others whose stories we don't hear. 

This is the lucky country. 

It’s a shame that this 'luck' of freedom including a liveable wage through meaningful employment and accessibility isn’t granted to everyone. 

Please help Felice fund her wheelchair.

My interview for Margie Warrell's Raw Courage TV

When I got back from overseas last year, I did an interview with Australian TV presenter Margie Warrell for her Raw Courage TV series. I am really excited to be interviewed by Margie because she's so established. And she's also just interviewed one of my mentors, Layne Beachley. Check out her YouTube page to see them.

The interview has just been published online. I talk about Ichthyosis, bullying, beauty, perceptions of difference and superficiality, and how I will probably look 25 when I am 61.

I am really proud of this chat - I remember not feeling so well after the long-haul flight - but we covered some big issues! Thanks for having me, Margie!

Brunch with my blog readers.

It gives me such a buzz when people tell me they read my blog, even more of a buzz when people say they like it! (Last week at the gallery a reader said "I don't want to ruin your day but I LOVE YOUR BLOG" and gave me a hug. Could not stop giggling. So lovely. But when I meet readers in passing, there's never enough time for me to get to know them. I feel like saying "hey let's go for a drink so I can get to know you too!". And so I thought I should make this happen. For real. 

After being inspired by Fat Mum Slim's Olympus lunches (mentioned at Problogger Event) and always Josefa meeting her readers for her blog birthday, I decided to meet my blog readers this year. At the end of last year I ran a little competition - one of the prizes was to win a brunch with me, my shout!

I spent one recent Saturday morning meeting four lovely blog readers - they won the brunch in my 5th blogiversary competition. And they were the loveliest! I met Melissa, Kylie, Jess and Claire. Adam came along too.

I chose those ladies based on their entries - they wrote about what they enjoy about my blog. While that might seem narcissistic, such responses remind me why I blog. Words like “you make disability accessible” and " I start work as a doctor in the new year, and I hope to carry your understanding in with me” mean so much. It’s like the little space on the internet is creating change, bringing people together. 

When all the ladies arrived, they joked that it was like a big internet date! But it definitely wasn’t as awkward. We all talked straight away - laughing over tales of how we met our partners, talking about travel and day jobs. It was SO good to get to know them all - what interesting lives everyone leads. There was never a lull in conversation, and everyone made each other feel comfortable. Kylie even blogged about the meet here.

I was honoured that they wanted to have brunch with me - so lovely that they read here and want to get to know me off my blog. I hope that we will remain friends for a long time. 

I can’t believe I went out for brunch and didn’t take a photo of the food! (If you’re wondering, I had a salmon omelette, Melissa had lobster rolls, Clare had Philly cheese steak, Kylie had granola, Jess had crispy chicken and Adam had steak and chips.)

This is what a great blog community is about. 

Which blogger would you love to meet? Have you met a blog reader?

Everyone's an expert. More unsolicited advice.

(source)

Being an online writer attracts opinions from everyone. So does having a visibly different appearance and rare condition! As I get published more widely, I have come to realise that this occupation and this condition attract unsolicited advice and opinions and, ironically, give me a tougher skin. This unsolicited advice is just another form of intrusion.

My blog post about no more apologies was published on Daily Life a couple of weeks back. It did so well - with lots of amazing, supportive comments on Facebook, and thousands of shares. I even got recognised by a reader on the train.

I also got two pieces of unsolicited advice emailed to me via Facebook email, plus a comment telling me that I shouldn’t hug people.

An email:

"I Carly, I was moved by you story as I had severe eczema. Often looked like you and used gallons of creams. I'm sure you've had lots of medical advice and probably been prescribed loads of steroid creams. If that's the case, please google "topical steroid withdrawal”

I don’t use steroids.

Another email:

"I read your interesting newspaper article, and wanted to write you a brief note to say that there is another thing to stop apologising for. I am the parent of a young woman with a major disability as well as a medical practitioner, and the thing that struck me about your article is that you shouldn't have to apologise for expecting better medication that does not cause you a social embarrassment. Australia is an affluent country, and we expect good medical treatments. 

I am not familiar with the treatments for ichythosis, but if you combine the pharmaceutical industry with the cosmetics industry, you are talking of multi-billion dollar concerns. No woman buying cosmetics would accept a cream that leaves a residue on her clothes, friends and pillow case, and neither should a person requiring a prescription cream.

There is sometimes a problem with big pharma companies investing in treatments for uncommon conditions, as they may not make a lot of money on them, but if you combine their research with the cosmetic companies research on creams, I cannot believe that there is not a better way.

Wishing you all the best in your career.”

I worry that she’s a doctor and she’s giving out these opinions. When I replied, she did apologise, which I am thankful for. I told her that I am treated by the best dermatologists in the country and I am disappointed that she believes there has to be a better treatment for me, based on my picture and several hundred words that I have written.

While I believe her message came from a place of good intentions, it's sad that she equates care with the need to be fixed. I am quite comfortable with my appearance and my skin, and as I wrote in the article, it's attitudes to disability that need to change. My appearance is not a social embarrassment.

And the Facebook comment: 

"Don't apologise for your disability, but do apologise for your (optional) actions. If a person is in a wheelchair and they move too slowly on a thin corridor, that is something they cannot help (not optional), so they do not need to apologise. But hugging is optional! It isn't like your disability means you MUST hug/touch people who don't ask for it. Sorry but I'd really dislike getting cream on my clothes, is that so weird?

On the other hand, if you make things you have to touch oily, like the floor or appliances, then that's not your fault, because you are just going about your life.”

He needs a hug.

I’ve written a lot about how I feel about unsolicited advice before. Here, here, here and here.

And no matter how much comes my way, I still don’t appreciate it. I hate the remedies offered, especially when they’re supported by a lack of understanding about Ichthyosis. I get that it comes from a place of care and concern, but often it’s really insulting and not very helpful. 

I understand that I put my life out there for people to read about - but they must remember that they usually only know me through 500 or so words plus a couple of pictures, and I’ve lived with this condition ALL of my life, seeking different treatments and cures over the years. A simple message of “great article, I can recommend some treatments that might help you, let me know if you’re interested” would be far more appreciated.

A friend told me "I think many people confuse 'care' with our society's 'need to fix things'. Some things need management, not a fix. So there's guilt about not being able to fix something and they don't realise it's actually them not the person they have projected on.”

And I agree with her - often these solicitors project their own insecurities and issues onto us.

Just because you might have an issue with the medical system, your own condition or appearance, it doesn’t mean you need to shoot your views off to a patient (usually a stranger!) who is very experienced in living with their condition.

I've encountered this saying a lot:

I think these are excellent words to think about when encountering someone who looks different or has a rare medical condition that you think you’ll be able to help.

(This is part one of my ‘Everyone’s an expert’ mini series. The next post is from a friend whose son has Ichthyosis. Whenever I put these sorts of posts out there, I feel the need to show readers that it’s not just me feeling this way! Look out for it next week.)