On othering. Dismissing people as being less human than we are.

This past week, the world was talking after seeing the image of a little Syrian boy washed up on the shore. Heartbreaking. Three year old Aylan Kurdi, his five year old brother Galip and his mother Rehanna drowned in the sea between Syria and Greece. The family was desperate to make a safe life, so they fled from war-torn Syria. "You have to understand, nobody puts their children in a boat unless the water is safer than the land."

Sydney Morning Herald reports Abdullah Kurdi told the Turkish news he hopes that his family's story, his little boy's picture that is so hard to look at yet went viral, will make the world see the humanitarian crisis.

"The things that happened to us here, in the country where we took refuge to escape war in our homeland, we want the whole world to see this," he said.

"We want the world's attention on us, so they can prevent the same from happening to others. Let this be the last."

BBC World News says the Kurdi family made three prior attempts to escape Syria - paying money to people smugglers to get them to Canada to stay with relatives. The fourth attempt was fatal. (Kurdi has been a surname given to the family by the media - and Aylan is the Syrian interpretation of Alan.)

"Alan set out before dawn that morning in Turkey for the Greek island of Kos with his father Abdullah, mother Rehanna, and five-year-old brother Ghalib. The Kurdis wanted to reach Canada to reunite with Abdullah's sister Tima, a hairdresser in Vancouver.

The family joined with a small group of refugees in Bodrum to attempt the 4km (2.5 mile) crossing to Kos. Abdullah texted his sister Tima from the beach to say they were leaving. "I passed the message to my dad in Syria," she said, "Abdullah is leaving now, pray for his safety."

But her prayers went unanswered. The two small boats were hit by high waves minutes after they set off and the captain fled. Abdullah Kurdi found himself fighting to save his two young boys. Of the 23 people in the group, 14 are believed to have died, including Abdullah's wife and sons."

Mainstream and social media has reacted strongly to this story, particularly the photo of Aylan. Many believe his photo should not have been shown, but there are also arguments that this photo will change the way we think about and work to make refugees safe. Tara Moss has written a great piece on the ethics of sharing photos of the deceased.

I watched the story being covered on The Project - they chose not to show the photo (although that link does show it - graphic image warning). Host Carrie Bickmore broke down, and Chrissie Swan said something very profound - perhaps as game-changing as Aylan's photo.

When Chrissie said "It's very easy when you're using words like refugee and asylum seeker and 'othering' words,", I applauded. Not because of the actions she's describing but for raising the issue of othering on national TV.

So many times privileged people sit back, apathetic, prejudiced and judgmental, saying 'those people aren't like me". But refugees, the disabled, indigenous, Muslims, black people, the LGBTI community - they're all people. They're just like us. They are us. Little Aylan is someone's son - someone who loved him enough to put him on a paper boat to give him a better life.

The most vulnerable in the world need our help and compassion, not othering.

I posted the above passage on Daily Life's Facebook page and then on my own. People empathised and wept. Later I read the most racist, narrow minded, violent comment from someone I know. I deleted it immediately. I am revolted to know someone who has these feelings. It was othering at its worst, denying that refugees are human, that they love and they're looking for a safer life. This 'friend' is no longer.

I've othered in the past - perhaps due to media and friendship influences, and a lack of knowledge. For that I am so sorry.

James Norriss, from There Are No Others blog explains the concept of Othering:

"By "othering", we mean any action by which an individual or group becomes mentally classified in somebody’s mind as "not one of us". Rather than always remembering that every person is a complex bundle of emotions, ideas, motivations, reflexes, priorities, and many other subtle aspects, it’s sometimes easier to dismiss them as being in some way less human, and less worthy of respect and dignity, than we are."

Othering is not talked about much in the mainstream media. It is more so talked about by those who experience and are impacted by othering language. So, it's very important presenters on prime-time current news shows address the issue.

Othering is when I've been told I'm not disabled because disability has negative connotations.

It's when they've said my mum's not black like other black people (and so it's ok to make racial slurs).

It's when someone wishes I'd have told them about my friend's disability before they met her.

Othering is a former friend writing "I've got many gay friends but I wish they didn't live this sinful lifestyle".

It's watching the news with apathy, dismissing people killed at sea as "just migrants".

Othering is when someone tells me "I love taboo and politicallly uncorrect words. At work I used to get in big trouble for referring to people with a disability as retards. But I can get away with calling my colleagues retards. Why is retard such a taboo word?"

It's newspaper headlines and politicians calling certain religions "death cults".

It's when a parent begs for acceptance for their visibly different child but blatantly states they will not accept gay people in the community.

Othering is when a stranger tells me I'm really attractive, despite my face looking like it's burnt.

Othering is when a waitress tells me my friend in a wheelchair "will have to sit at a different table so they don't get in the way", and then being incredibly nice to them when she sees how good looking my friend is.

The impact of being othered is a refugee lying about being a student in Australia, and visiting his parents in Sydney, because "the words asylum seeker and refugees are very bad words in Australia". He tells little white lies to make others feel more comfortable.

Othering is divisive. It's biting. It's dehumanising. It needs to stop.

Further reading

How we can help refugees

Talking Frankly's amazing piece on how she feels about the refugee crisis

To the mother of Aylan - a letter by Rebecca Bowyer

How artists have responsed to the tragedy of Aylan and others killed at sea (graphic - yet beautiful - image warning)

A Chrome plugin that changes "illegal immigrant" and other dehumanising terms to "human"

Spread the word to end the word has great resources about why the R word is unacceptable.

Tamzen Temple wrote about othering too.

A beautiful welcome for refugees

#AppearanceDiversity: Karen Crespo - the first amputee missing four limbs to feature in New York Fashion Week. "Role models, not runway models."

I first came across Karen Crespo's awesomeness on A Mighty Girl in September 2014. I contacted her to tell her how much I admired her, and we becomes Facebook friends. When Karen sent me this post through last month, I googled her to find some relevant links, and she happened to be on A Mighty Girl again - that same day! Karen made history in 2014 by becoming the first amputee missing four limbs to feature in New York Fashion Week. One giant leap, hey!?! Karen is a game changer. 

I am so lucky to be able to share her story with you today. Meet Karen. 

"My name is Karen Crespo and I am 31 years old. I am originally from Manila, Philippines, although, I live and grew up in the suburbs of Los Angeles, California. I have a degree in Nursing so I used to work as a Registered Nurse at a Los Angeles hospital. I am interested in a lot of things people my age like to do such as hanging out with friends, going to concerts, going out to dinner, traveling, and just enjoying life. I am passionate about volunteering to help others in any way I can. I am involved in many organizations such as the National Meningitis Association here in the US and various amputee organizations.

In December 2011, I contracted a devastating blood infection called bacterial meningitis or meningococcemia. Due to this debilitating illness, doctors gave me a less than 10% chance of surviving. In order to save my life, doctors had to amputate both my arms and legs. I ended up having a blood clot in my brain, 2 mild heart attacks, respiratory failure, and kidney failure so I was on dialysis. Besides my amputations, I lost part of my ear, hair, nose, some of my hearing, and I have numerous scars on my body. I am now living my life dependent on wearing prosthetic arm and legs to walk and to do functional tasks.

My life now is very difficult since a lot of times I have to depend on others for help. For the first 28 years of my life I was used to living my life a certain way and then all of sudden everything changed. It is definitely very challenging to adapt to living without my limbs. I feel as though I took a lot of things for granted before such as walking on the sand at the beach, touching or holding things in the palm of my hand, and so much more. Alot of people don't realize how hard it is to walk with prosthetic legs. It's like walking on stilts all day where even walking five steps for getting up from your seat can be very exhausting and challenging.

The biggest challenge I encounter being a quadrilateral amputee is relearning everything so I can be independent again. Relearning basic things such as bathing, eating, dressing myself, and other activities of daily living was and still is extremely challenging. What used to take me 5 minutes to do can now take me 30 minutes so certain tasks can be very frustrating. It is also very difficult to rely on others for help especially because I am an adult and I was very independent before all this. I used to live on my own, work a full time job, pay my own bills, and now everything has changed.

The biggest achievement I encountered since I contracted meningitis is walking the runway during New York Fashion Week. When I first came home after 5 months in the hospital I was embarrassed and I did not want to see anyone. I would have never thought I would be courageous enough to strut my stuff down the runway during fashion week. Once I stepped on the runway platform, it was like I had an epiphany and all of a sudden I realized why I was given a second chance in life. I feel as though my purpose in life is to inspire others and be a role model for people who have disabilities and even for people who don't, but who are just going through rough times.

The overall biggest achievement I probably had throughout my whole lifetime is overcoming both the physical and mental challenges of losing all my limbs. Staying strong and being motivated to make myself better after I became an amputee was not an easy task. It is still a learning process and like many others, I have good days and bad days. Learning how to walk was not easy, learning how to drive again was not easy, but I still kept on pushing through. I knew I couldn't just sit at home and feel sorry for myself.

I couldn't of done all of this while staying positive if it wasn't for my faith and my close family and friends. My mother actually played the biggest role during my illness and rehabilitation process. She quit her job to be my full time caregiver and sacrificed so much for me. My mother slept in an uncomfortable chair next to me every night during my 5 month stay in the hospital and the 7 month stay during physical rehab. Without them, none of this would have been possible. They motivated me to continue to stay strong for myself and taught me that it is okay to cry during times of frustration or sadness.

If someone who looks different or someone that is not happy with their appearance asked me for advice I would tell them to stay positive and humble while keeping their head up high because everyone is different. No two people are the same and that's what makes us unique. What is the real meaning of "normal" anyway? If people are staring because a person looks different they are probably just curious because they have never seen anyone in that particular type of situation. I think the best bet to do is to say "hi" in a polite manner and ask them if they have any questions. A lot of times people will be taken back you asked them a question, you are willing to talk about your situation, or that you are so positive about it. If I can do it so can you.

I would tell my younger self to enjoy life, not work so hard, and to maintain a healthier lifestyle. Although, I did take care of myself and I did not smoke or do things to really jeopardize my overall health. But I feel as though I could have worked harder to maintain a better lifestyle and perhaps I would have never contracted meningitis. I was definitely a workaholic ever since I was old enough to work and I probably could have slowed down as I got older. Life can flash us by and I feel like the older I get, the faster the days in the year go by.

(source)

The biggest turning point in developing my self-confidence was definitely walking in New York Fashion Week. The motto of the fashion designer I modeled for Carrie Hammer, was "role models, not runway models." It was therapeutic for me because after the show so many people who had issues with themselves contacted me and told me how I helped them realize their lives weren't that bad. It made me re-evaluate my own life and realize I need to love myself."

Follow Karen on Instagram and Facebook, and visit her website.

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. 

Ichthyosis Awareness - Shawna Lynne Grady sings.

My friends in the Ichthyosis community were sharing this video of a young woman singing. I was impressed with her sound, and the reach of her videos.

She also has Ichthyosis and she has skyrocketed to YouTube fame with her songs. And she's breathtakingly beautiful.

Meet Shawna Lynne Grady.

"When first asked why I sing, I must admit that I was a little taken back. Singing was never an option for me... it was like breathing. It was something that I just had to do. That being said, singing isn't something that I ever thought I could do on a professional level. The music industry is severely image based and let's face it... I don't fit the stereotypical image. My mindset began to change, however; when I posted a video to Facebook and decided to make it public. At the time, I had absolutely no idea how such a small act was going to change my life in such a profound way. Within a few days my cover of Sam Smith's, "Stay With Me" had over 100,000 shares and 300,000 "likes".

Even more surprising was the outpouring of love and support. I began receiving thousands of messages from people all over the world sharing their stories of struggle. It made me realize that insecurity is universal and the thing that I had viewed as a flaw my entire life, was the very thing that people were able to relate to.

While my journey is far from over, I can truly say that is has been one of the most incredibly eye opening experiences of my life. People have said that I have inspired them, but in actuality they are the one's who have inspired me."

Follow Shawna on Twitter and Facebook. View more of her videos on YouTube.

Read more posts from others affected by Ichthyosis here.

 

Appearance diversity: Hanka's story. "The more I read about other people with an unusual appearance the more I felt I’m not alone."

A while back I got a lovely message from Hanka, from Germany.

She wrote:

"I want to say thank you. I'm reading your blog since a couple of months and it helped me very much ... I have a port wine stain on my face and I have laser therapy for almost 16 years. I never felt comfortable with this treatment, because of the pain and not knowing if it's the 'right thing' for me. In the last 4 years I was thinking a lot about to stop the therapy, but I was insecure. With your words and the way you show that a normal, happy, successful life doesn't depend on appearance you give me much hope and I realise that I feel comfortable with myself and I don't need to fit the norm.

Stay the way you are. Your spirit is amazing - it shines through your words.

Kind regards from Germany"

Gosh I love to receive messages like Hanka's. It makes me happy knowing that me sharing my story can help others feel more confident in their own skin. Straight away I asked Hanka if she'd write her story for my blog, and she did.

Hanka has written about how her ethnicity - she's a Sorb - has helped her confidence. She's got a very interesting story.

Meet Hanka.

"I’m Hanka Zschorlich, 22 years old and I am living in the Sorbian minority in East Germany.

As you can see on the pictures I have a birthmark on my face, which is caused by capillary malformation in the skin. It’s called port wine stain. My parents decided to have laser treatment for me, when I was 6 years old and I had this therapy till a short time ago. Then I decided to stop this treatment, because I feel comfortable with my face and I need a break to experience a life without it.

I know that I stand out and it’s ok, but this perception wasn’t quite easy. Four years ago I asked myself why I do this therapy and I recognized from time to time, that I was doing the therapy out of habit.

The most important thing in my life is my family. I grew up with five siblings and my lovely mom and dad. I’m the youngest one in my family and so I learned in very young age stand up to my sisters and brother. My family encouraged me very much to be what I am and to say what I think. I’m very thankful to have such a wonderful family.

In the time after I moved from my parental home to another city I was insecure. It mattered to me that people stare at me and not everybody can handle the way I look. I started to search for like-minded people on the internet and found a couple of charities and blogs. The more I read about other people with an unusual appearance the more I felt I’m not alone and with the information I get from the charities I know how to handle difficult situations and that I don’t need to care about other people’s expectations. This raises my confidence.

Another big thing in my life is my origin. I’m living in an ethnic minority called the Sorbs. Being part of this minority means to be part of a huge family, because everyone knows each other. We have a very wide-ranged culture with special traditional clothes and celebrations affected by our catholic religion. It always gives me a good feeling to come home, party with my friends, hear my mother tongue and sing some Sorbian songs.

Most of my friends are also Sorbs, which I know since playschool. We have very solid friendships and I feel very accepted in this circle, because they see me as a person and not as a birthmark. Although we rarely meet, we love to travel around, doing some weekend trips.

My passion is art, but I’m not talented in drawing. I love to study other people’s art, that’s why I study history of art. I’m impressed of it, because it shows how brave people stand behind their ideas. It doesn’t even matter if it’s their own or an art style. Some ideas seem to be very strange in the beginning, but after a while of thinking and looking at somebody’s artwork you maybe start to understand what this artist meant."

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

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

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

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

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

A few weeks ago I saw this from Lucy:

"This little boy comes up and starts touching chloe.

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

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

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

Lucy then commented:

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

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

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

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

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

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

 

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

 

Facing my own prejudice about disability.

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

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

Miggy writes:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Appearance diversity: Boob in a Box.

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

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

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

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

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

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

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

 

This fan ain’t for decoration.

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

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

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

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

 

Appearance diversity: Turia Pitt tells her story.

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

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

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

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

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

Meet Turia Pitt.

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

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

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

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

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

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

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

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

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

― Rodger Halston

Visit Turia Pitt's website.

Follow her on Instagram.

 

Why it's important for Turia Pitt, burns survivor, to grace the cover of a national women's magazine.

Turia Pitt is one of the most important people to feature on the cover of a magazine. I can't think of a person with a facial difference to feature so prominently in mainstream media in my lifetime. Turia Pitt is a burns survivor and she's pictured in her natural and beautiful state - not retouched - on the cover of this month's Australian Women's Weekly. I've given up on buying women's magazines, but today I will be buying this one.

(Source)

Magazine covers are reserved for idealised versions of beauty. Faces without freckles or laugh lines. Perfectly straight teeth. Taut foreheads. Even supermodels are airbrushed. It's a big deal for a woman of colour or larger than a size 10 to be featured. Physical beauty seems to be everything.

In 2011 Turia Pitt sustained burns to 65% of her body during a marathon in Western Australia. She used to work as a model, and then in the diamond industry.

(Source)

 

Her life - and appearance - changed dramatically when at 24 years old, she was burnt. She spent 864 days in hospital, had over 100 surgeries, her fingers were amputated and she's undergone rigorous rehabilitation to learn to walk again.

Three years after her accident, Turia says she's the "luckiest girl alive". She's certainly tenacious. She's an ultra marathon champion - recently riding from Sydney to Uluru and tackling a section of The Great Wall of China to raise funds for Interplast, the reconstructive charity she's affiliated with. She's also studying for a Masters of Engineering. And earlier this year she was the NSW finalist in the Australian of the Year awards. She's got a loving partner, Michael. Talk about superwoman! She has achieved so much.

(Source)

Turia told AWW

"Being on the cover of The Australian Women's Weekly is a huge honour," says Turia. "I feel very humbled."

"For me, it sends the message that confidence equals beauty. There are a lot of women out there who are so beautiful but don’t have the confidence, and that's what gets you over the line."

I asked Helen McCabe, AWW's editor, about the importance of Turia on the cover.

She tweeted: "I am snowed under... But the reaction is a bit overwhelming today!". She confirmed the reaction was positive. "It is fantastic", she said.

I tweeted back: "I agree! it's so good to see appearance diversity on the cover of a women's mag. As someone who looks different, I thank you."

And that's the truth. I am so thankful to Helen and Turia for giving women with facial differences hope that we can make the mainstream media, without alteration to our appearance. Turia's scars are visible, the texture of her face has not been altered, and her hand - minus some fingers - is not hidden. She's beautiful.

When I was at high school, I made a comment that I wanted to enter Dolly's Model of the Year. It was the kind of comment said with the seriousness of a 15 year old, heady on Impulse and the naive desire that people are only valued on physical beauty. I wanted to be in Dolly with Miranda and Apia and Shannon - those young models I grew up with. Another student told me that if I did enter, I'd have to change my appearance, put make up on and make sure my photos were in black and white. I guess her harshness was the reality though. I just wouldn't fit the norm that people are used to.

Turia's cover photo gives me hope. Young, impressionable women will see that beauty comes in all forms, beauty is strength and recovery, and that magazine covers don't have to be photoshopped.

Her story and achievements also show that life can go on to be extraordinary, even after acquiring a disability. I love that her story isn't just about her appearance. My friend and colleague James Partridge, CEO of Changing Faces (and burns survivor) tweeted "Great to see that Australia's biggest selling magazine @WomensWeeklyMag is marking Turia Pitt's achievements".

James also said

"I was delighted to see the achievements of Turia Pitt so deservedly recognised in her invitation to join the Women of the Future judging panel of The Australian Women's Weekly - and we can see why she was chosen to be on the cover of this month’s magazine. It’s because of her confidence and her success as a mining engineer, fund-raiser extraordinaire and inspiration to many – and we salute her here at Changing Faces because she is proving that people with facial burns or other unusual facial features do and can achieve those lifetime goals.

"And we also know that her appearance on the front cover of a very popular magazine will challenge public perceptions – I was delighted to see that the magazine favourited my tweet because it is promoting what we call ‘face equality’. No longer should people with facial burns like Turia be subjected to stereotyping, prejudice of discrimination but be treated with respect and equality.

"We hope Turia will agree to join our latest project to promote face equality which is called, appropriately I think, What Success Looks Like."

I want people to get used to facial difference. I want them to see appearance diversity everywhere. I don't want people to be scared and look away from someone who looks different. I want people to see facial difference as successful rather than a perceived failure. I want the media to play more of a positive part in changing the way people perceive beauty.

Turia Pitt's cover is a game changer. The AWW's monthly readership is 2.4 million (magazines), and its website receives 21 million hits a month. All those people are going to see a different kind of beauty than they're used to!

The media needs to take a positive risk of inclusion. Young girls and women (and males) everywhere need to see that facial difference can be celebrated. This is exciting!

Visit Turia Pitt's website.

 

Taxi driver education - a positive outcome I helped to achieve!

You may remember in July last year I was harassed by a taxi driver - he said the skin and cream on my face would ruin his car.

I wrote my complaint on my blog, and formally too. I took this case to the Human Rights Commission, the Victorian Taxi Commission and 13Cabs.

One of the outcomes reached in mediation and meetings with all three organisations was to develop better training for taxi drivers - to teach them that disabilities may not be so obvious, and to ask them to treat each customer with respect and patience, regardless of disability.

I'm pleased to share a video that I helped to make (also featuring my friends Kathryn Beaton and Jax Jacki Brown).

 

You can view the video here.

As I said on the video, disability is wider than wheelchairs and guide dogs. And I asked the taxi drivers to think of the way they treat people - what if this was your sister, wife, daughter or child?

I hope to see improvements in the taxi industry as a result.

Thank you for your support - especially to the Mantra Hotel in Melbourne, Graeme Innes, Debra Cerasa, and Kirsty from 13Cabs.