31 December 2016

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


 

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

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

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


 

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

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

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

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

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

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

10 year old me was lonely. I sat on my own most lunchtimes. I read a lot of books. When the girls in my class braided each other's hair, they avoided mine. They wouldn't  sit where I'd been because of fear of contagion - even though I'd been at the school for five years and in that time, no one had caught Ichthyosis. Duh. I preferred to be in hospital because the patients and nurses knew what it was like to be different and sick, and they liked me more there. A year or so before that photo was taken, I told my Mum that didn't want to live anymore, and I got help from a psychiatrist, but I don't remember any of that time of my life.
 
A man (then boy, of course) whom I went to school with a few years after the 10 year old me photo was taken recently told me he was one of the only boys in my class who would hold my hands during dance class in PE. The other boys covered their sweaty hands and sniggered to their friends when they had to dance with me. They might catch something. But not him. He braved my rough, oily red hands. He feels good about being one of the few to actually hold my hand. He said the other boys gave him shit for it. My heart sank for two reasons - thinking back to the time where people were too immature and repulsed to hold my hand, and for my now friend telling me he took a hit for the boys club. Such a great guy for telling me this. 

As Clem a Ford writes in Fight Like A Girl

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

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

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

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

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

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

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

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

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

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

❤️



 

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

Has this blog post helped you or made you think? Please consider buying me a drink. Thank you! 

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


30 December 2016

Giggling on the Just A Spoonful podcast

 

 

You know when you have a crush on someone and somehow you magic your life so your worlds collide and you do something together? Well that hadn't happened to me until I was asked to be on the Just a Spoonful podcast with Kaitlyn Plyley earlier in the year. I had SUCH a giddy crush on this podcast. I remember listening to all of the previous episodes the week I discovered the podcast. I loved the interviews with chronically ill and disabled guests. And I love the theme song, which is often stuck in my head for hours after listening. But my biggest crush was on Kaitlyn's accent! (I now realise I'm on the verge of being one of those micro-aggressors who can't get past how amazing she sounds - but I swear I see Kaitlyn's big, creative brain too!) And so can you imagine my excitement when I got to talk to her on the podcast for real?!

Listen to the podcast here:


Unlike the miserable eventuation of many of my crushes, Kaitlyn and I became BFFs immediately when we started talking. I KNEW we would get along. She is so nice and funny and smart and accomplished. What I didn't know is she is as big a Savage Garden fan as I am. Friends, you're in for a treat. 

We talk about the awful film Me Before You (I had not watched it yet) and the concept of Cripping up, oppression Olympics, the guilt I feel when I'm not able to work, and how hard it can be to prove ourselves because of our disability. And then there's a whole heap of NOT talking about disability, which I really like. Here's a quote: 

"There's that pressure, you know, because I've been given an opportunity to work, been given a lot of opportunities, [that] I have to perform at 120%. I do most of my writing in bed, because I have to conserve that energy ... My priorities go, my skin and then my day job, because they have to." 

I must warn you - not to put you off, because I hope you'll stick around - this podcast goes a little like this: Hello. Giggle. I GUSH OVER HER ACCENT. SHE GUSHES OVER MY DRESSES. More giggle. Disability talk. Giggle. Pop culture. Giggle giggle. OMG YOU DO LOOK LIKE JUSTIN BIEBER! Giggle giggle giggle. Disability talk. Serious stuff. Giggle. OMFG WHY DIDN'T WE TALK ABOUT SAVAGE GARDEN FOR THE WHOLE EPISODE?! I really mean that. Giggle. Savage Garden song. 

Kaitlyn and I met IRL in Melbourne a few months after recording the podcast. She understands the need to bring a blanket to other people's houses because of likely coldness and soreness. We are yet to start our own Savage Garden Gigglers podcast, but that's a good idea, right?!

 

All the links:

Follow Kaitlyn on Twitter and Facebook. Visit her website
Subscribe to Just a Spoomful on the website and iTunes
The podcast artwork is by Erin Michelle. And the song is called Sleepless - it is by Anna O

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29 December 2016

Talking authentic disability representation in media on the Neighbuzz podcast


 


A couple of weeks ago I was interviewed for the Neighbuzz podcast. It was a special bonus episode focused on disability.  Neighbuzz is hosted and produced by Vaya Pashos, who I've been chatting to on Twitter for years. It was so good to finally meet in real life! I love Neighbuzz because it's more than just recapping the show. It's bloody funny, and Vaya and her team often talk about serious current affairs such as consent, victim blaming and of course, diverse casting. It's also really well produced.

I put Vaya and my friend Kate Hood in touch - Kate recently joined the Neighbours cast for a month. Sancia Robinson - who played Elaine, a quadriplegic woman in 2013 - also joined us for the podcast. Sancia currently works as a casting director and I truly think our discussion will influence the way she makes decisions about diverse casting.

Listen to our podcast
I watch Neighbours most days - it's a soap I've been watching for years. And so I was excited to see Kate Hood joining Neighbours. This is a pivotal moment in Australian TV history - Kate is an actually disabled woman playing a disabled character - Maxine Cowper. 

Kate and I met at Quippings in 2014 - she is a wonderful writer, accomplished actor (she used to be on Prisoner), director and producer at Raspberry Ripple Productions, and has a beautiful voice. She narrates a lot of audiobooks. Kate's character Maxine is from the wrong side of the tracks - tough talking, and enmeshed in Paul Robinson's crookery from her first episode. 
 

Her opening scene: "I may be in a wheelchair, but I can still put away a few tinnies."

You're probably aware that talking about disability and media representation is one of the things I love to do. So it was a brilliant opportunity to talk to people who get it - who are directly involved in making their own media and influencing  We joked that four women on a podcast would make it so hard for listeners - a la the commercial radio fable that women can't host their own radio show. 

 

It was also great to chat about Me Before You and the reason we protested online and in front of cinemas  Many non disabled people didn't understand our reasons, and defended the book and film as fiction. A few "friends" actually defriended me because apparently my involvement was OTT. But the truth is, representation matters. The narrative that being disabled means a life is not worth living shapes how disabled people see ourselves, and of course, how disability is perceived in real life. 

Representation matters. Fiction can damage people. A friend who has a disability told me the film impacted them so much they felt worthless, and was made to feel suicidal. They were thankful for us speaking out about the film - our actions helped save them. My friend told me they have no doubt others with spinal cord injuries felt the same watching and reading about Me Before You. 

We all discussed the idea of "cripping up" - when a non disabled actor plays a disabled character - and how it's not acceptable to black up, so why is it ok to crip up? You'll hear that Sancia felt very uncomfortable playing a disabled person, but took the role very seriously. 

I also talked about how disability is the last taboo with jokes in the media. A month ago I watched half of How to Be Single and was disgusted. Rebel Wilson's character joked about dating "midgets and albinos". I wondered when the day will come when actors can opt out of ableist lines and script writers will avoid writing them? Will media makers ever realise that ableism is as bad a racism and homophobia? Perhaps a better question to ask is, when will they even recognise what's ableist, and the impact ableism has on disabled people?

Kate and Sancia bonded straight away. They chatted like old friends. 

The Neighbuzz chat was lots of fun, and very well considered.  I hope helps make people think about the positive impacts of authentic casting. It was so lovely to meet Vaya and Sancia, and to hear what a great experience Neighbours has been for Kate. Thanks for having me Vaya! 

All the links: 

Listen to our episode of Neighbuzz here:


Keep up with Neighbuzz on Facebook 
Visit the Neighbuzz website 
Follow Neighbozz on Twitter
Chat to Vaya on Twitter

Follow Sancia on Twitter 
Watch Sancia's play What's the Matter Mary Jane?

Follow Kate on TwitterFacebook and her website  
Find out more about Raspberry Ripple Productions 

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27 December 2016

Silent Tears exhibition at MAMA Albury

This post mentions violence toward women with disability. 
 
I went to see Silent Tears at MAMA - Murray Art Museum Albury in Albury on the weekend. It was moving and heartfelt and the stories of the women show bravery and endurance. Silent Tears is an exhibition showing photos of women with disability who have survived violence. The photos have been taken by Belinda Mason.

I am featured in Silent Tears - Belinda asked me because I've been the subject of online abuse as well as regular micro-aggressions about my appearance. There is a transparent large photo which hangs from the ceiling. See it and read about it here  There is also a documentary series where participants  are featured in every day settings. You can see my photo and read about it here.

I don't feel worthy when the other brave women are survivors of horrific violent circumstances. I haven't been subject to physical violence but the daily grind of ableism and microaggression is wearing, and the online hate speech is certainly awful.

My friends Anj and Jane (below left) and all the other women photographed: you are amazing. 


Thank you for including me Belinda, congratulations to all the women for speaking out about violence, and thanks to MAMA for hosting it. 

Silent Tears project contains images and stories that  include depictions  and some graphic accounts of violence against women. 

Need Help? Are you experiencing sexual assault or domestic and family violence Seeking to support someone who is? Help and assistance can be found. Call this number  1800 737 732 to access counselling delivered by qualified, experienced professionals 24-hours a day, seven days a week, from the National Sexual Assault, Domestic Family Violence Counselling Service. www.1800respect.org.au.

If you are feeling unsafe right NOW, call 000.

23 December 2016

One year since Cripping The Mighty

It's a year since #CrippingtheMighty happened. In short, The Mighty, a disability-focused site, publishes content that is damaging to people with disability. A number of disabled writers and activists spoke up on social media, and created a lot of content about the issues, offered advice to writers and editors, and a few of us (now former) writers were thrown out of The Mighty writers group - probably because we were too outspoken for them. I wrote about it here and here - and there are lots of others who did too. You can read a Storify of tweets and articles here

The best thing to happen was that I met amazing, likeminded people - and I've gone on to write lots of articles this year - and been paid for them!

Despite the commentary around it, and a number of us trying to work with The Mighty, they continue not to pay writers, and continue to produce inspiration porn and divide the disability community. It's concerning to see The Mighty used as as resource to teach people about disability, and to connect people with disability. They are looking at changimg, though. However, I imagine most writers would prefer to be paid for each article rather than through a best performance system, or not at all, with forecasted revenue potentially going to not for profit. Just pay the writers. 

In an email last week, Mike Porath, founder and CEO wrote:

 
 As we complete our second full year of operation, I wanted to give you a brief update on The Mighty, ask for your thoughts on a key initiative, and encourage a few of you to take a larger role in our community. 
 
First, the update: Together with your help we are growing our community and helping so many more people. When we launched The Mighty in 2014, our stories were viewed 2,000 to 3,000 times a day. Now our stories are being viewed 2 million to 3 million times a day, including our videos. If you want insight into our operation, the effect our stories are having on people, how we are growing and where we’re going from here, please check out my post from a couple months ago
 
Second, a new initiative: to fund our growing operation, we will begin partnering with brands as sponsors and begin experimenting with different ways to drive revenue. Over the coming months, these experiments will only cover a small fraction of the costs to run the site, but they will help us determine the best ways to grow The Mighty into something that helps far more people in many more ways. 
 
As we enter into this new phase, we want to get your thoughts on ways we can contribute a portion of the revenue to the community. Here are just three possible examples: 1. Our plan from the beginning was to contribute a portion of our revenue to nonprofits that are working with The Mighty and our contributors. 2. A performance-based payment model for contributing writers. 3. An operation that helps companies (our future sponsors) hire more people with disabilities and other health conditions.
 
Again, as we begin to bring in revenue (we’ve made no revenue up to date), any initiative we fund will be fairly small, but we have a very big vision of what The Mighty can become and expect there will be many ways for us to contribute to the community as we grow. Please take a few minutes to give us your opinions on this matter and others in this survey here.
 
Third, an opportunity: Have you ever considered working for The Mighty? We are getting about 1,000 submissions a week from contributors, far more than our small team of editors can handle. We're hiring part-time editors in several of our sections. To find these people, we'd like to start with you: the people in our community who know us as both a site and brand, and the conditions we cover. We're thrilled at the idea of having some of you join our Mighty team. 
These positions can be remote and have flexible scheduling, but they will also require a great amount of training and eventually, fast editing with thoughtful ways to frame stories. To apply to take an edit test with us, fill out the application form here. We hope you'll consider applying, but we can only bring on a few paid positions right now, so please do not be discouraged if you are not initially selected. If you have any further questions about our hiring process, please reach out to community@themighty.com. We'd also like to encourage any college students to reach out to that email address if you are looking for an internship. We'd like to reiterate: we are so excited at the thought of you joining our Mighty team and grateful for what you've helped us create so far. We've truly done this together.

Mike Porath
Founder and CEO, The Mighty

The fabulous Alice Wong interviewed a number of us who took part in Cripping the Mighty - all former writers - and here's the result on Disability Visibility Project

One thing I didn't say in my spiel, but wish I had, is that people who keep writing and sharing The Mighty posts are perpetuating the problem. It is not a site that supports disability rights. It doesn't pay writers. It doesn't respect advice from actually disabled people. It caters to the inspiration porn loving, medical model following, burdened parent. I have lost respect for writers who continue to write for The Mighty knowing the problems, and the feelings of many disabled people.

Since last December, The Mighty has categorised impairments. They have dedicated Facebook pages per impairment, and readers can search the site and view articles on the impairment they choose. I don't understand the divide by categorising impairments. So medical model focused. If you have cerebral palsy, why not learn about autism, or if you're a parent of a child with Down syndrome, why not read how the experiences across disability types can be similar.

It also takes advantage of writers who feel this is the best opportunity they can get. There are SO many more ways to get your voice heard. I've seen many disabled writers published in the mainstream - really making waves. I've been one of them, writing for the ABC and News.com.au this month. It's been a huge reach and a brilliant opportunity. 

As I learnt from Cripping the Mighty, and in my other areas of work this year - there are hundreds of actually disabled media makers out there. We've come together to highlight important issues including the impacts of the US Presidential Election, assisted suicide, the murders of disabled people, and of course media representation. We mobilise on social media. And these are the issues The Mighty isn't covering. 

There is no reason for our voices not to be centred in the media. Nothing about us without us. 

20 December 2016

Healthcare and disability article for the ABC

I'm excited about my second publication on ABC News this week. I was commissioned to interview a few people with disability who navigate the healthcare system. I spoke with an Aboriginal woman, a woman from rural Victtoria and a young man. They were so generous with their stories. Here's the final piece.

 
Here's a blurb:

"Those of us with disabilities often find a visit to the doctor leaves us feeling like we're forever the teacher, especially if our disability is rare or little understood.

A quick trip to the GP for a cold can become a long appointment where I'm giving a curious doctor an explainer on my disability.

Or there's the flipside, where my disability is forgotten and the doctor fails to realise the impact it has on my general health."

Read more here. (Also, the comments suggest a headline was the only thing read...)

Thanks for having me ABC News! And thanks James, Michelle and Tracy for your time and lived experience. 

Have you listened to my podcast yet? Have a laugh by listening to Refreshments Provided

19 December 2016

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

 


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

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

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

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

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

This is tiring.

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

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

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

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

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

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

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

And then there's always my own high achieving self telling me that the way I respond will shape a stranger's experience of dealing with a disabled person or someone with a facial difference. I might be the person to make them never want to interact with someone like me again. It's a huge responsibility to get it right. Amd I don't want to be seen to be scary and difficult. That angry red woman. Because I'm not.
 
The cleaner never came today. I will be on guard another day. And I wonder if something came up, or word has got around the agency to avoid the angry red woman who cried discrimation. 

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16 December 2016

My blog turns 7 today. An article I wrote. Thank you for being a friend.

 

Hello! 

My little blog turns seven today! It's seven years since I started off with this small voice

Over the years, I've been more courageous to share big opinions - my voice has become much bigger. (Some times I get into arguments with people on the Internet - I work very hard at being diplomatic.) 


I wrote about those awful tag a mate memes, and the impact of ridiculing people's appearances on the Internet. Because that happened to me three years ago next week. 

 

Here's an excerpt:

"Sadly, some people I know have tagged their mates in memes of overweight women. Even when I’ve told them about the impact these memes have on me and others, they don’t get it. They don’t understand what it’s like to be mocked or excluded because of their appearance.

A first-hand story about how these types of memes affect an actual person is not enough for them to become empathetic and remorseful. They just get defensive. I thought that once they knew about how I’ve been treated because of appearance, they might stop engaging in this immature, heartless activity. They didn’t.

When I speak up, I’m told to move on. It’s just friendly chatter. They’re good people, just having a laugh. They’re not doing any harm.

Except they are. And if they claim to be inclusive and against bullying, they are contradicting their values by sharing these memes for a laugh."


Who would have thought seven years ago I would be published on national news sites? I didn't. Starting a blog has been the best thing for my career. I'm living my writing dream. Thank you to all the editors who have published me. And thanks to the people who hired me to speak too. It's seriously a privilege to be paid to do things I love.

And it's been great for making friends too. I had a little meetup at the art gallery on the weekend. These lovely ladies, and a man, came to hang out and it was so much fun! 
 
I want to do more of these catch ups soon. What do you suggest?

Blogging has given me so much - most of all getting to know myself, become more confident and be proud of living with a disability.

Thanks for reading here (and chatting on Facebook and Twitter for all these years.  Thanks for the positive comments, and for telling me when I don't get it right. Your readership, support and friendship means so much. I love this little place of mine on the Internet. 

PS - Have you listened to my podcast yet? Listen over here. 

And if you want to support me by buying me a drink, click here

11 December 2016

Buy a 2017 Walander to support heart and lung transplant patients.

Are you looking for a last minute Christmas present, or a just-because-present, or simply need a calendar because you some have one and you're one frantic schedule away from missing an event? (Maybe that last one is just me - I don't have a clock in the house either!)

My BFF Camille has created the Walander - featuring her beautiful dog Wally. Wally is an Instagram star! I met him for tn first time last year and had a cuddle, and Cam snapped a pic. The hits on my Instagram were off the charts! 

Wally LOVES to get dressed up. He really does. Here's a video of him pulling out his costumes from a drawer. And so Wally's rocking the model poses from January to December 2017 in a calendar.

 

One hundred percent of the funds raised from the Walander will go to the Heart and Lung Transplant Trust of Victoria  

The Trust helps patients on the transplant waiting list, and people who have received generous organ donations. The Trust provides apartments to post-transplant patients - it's within walking distance of The Alfred. This becomes a place to call home for 3 months while they go through the most traumatic experience of their lives. It also gives a fitness grant to post transplant patients, so they can maintain their fitness while recovering. Other services include welfare funding to patients who require it, and a contact line for anyone who needs to talk. What an amazing service. 

Camille received her new lungs in 2013, and is now Vice President of the Trust. And Wally has brought so much joy into Cam's life. Look!

 


Walanders are $25 plus $5 standard postage, or a little extra for express. 


Wally won't get out of bed for less than 5 treats a day now. Such a diva. 
 
This is not a sponsored post. I bought my own Walander. You can sign up to the organ donor via this link in Australia. Google the organ donation programs in your country. Don't forget to tell your loved ones your donor wishes. 
 

08 December 2016

My year of writing - reflections on my birthday

 

It's my birthday today! I'm halfway to 70. Can you believe it? I can't. This is middle age. I don't feel my age, I don't feel grown up, and don't think I look it either. What does 35 even feel like anyway?

Thirty four was a big year. I got married, went overseas, changed jobs - from full time to part time and freelancing - and have been very, very sore. I had my wisdom teeth out, lost friends and had a lot of self doubt. Honestly, I haven't enjoyed every moment of it, but the big moments and achievements definitely made up for the awful times. I made many new wonderful friends and had some great opportunities including being the opening speaker before our former Prime Minister Julia Gillard. 

I thought it would be a fun thing to do a year in review - reflecting on the writing I've done this year. My friend - talented author - Anna Spargo-Ryan did a year in writing (her novel The Paper House was my favourite book this year, and she should be so proud of all of her achievements!), so I've drawn inspiration from her. It's also a great way to collate my articles so I can send off well overdue invoices to my editor. Plus I'm a procrastinator. 

I've included posts I've written for my blog here too. Because although they're not published on a mainstream platform, I'm still proud of them. 

This year I started a Patreon account for readers to support me blogging. I know that there are many people who use my work in their academic research and teaching, and even to get advice on how to live with Ichthyosis. If this has helped you, please consider becoming a Patron of my work. You can give a small amount monthly. Think of it as buying me a drink to say thank you. 

Articles I've written for the media


March was the month I got married, and I wrote about appearance diversity and wedding planning for Nu Bride

In June, SBS Life asked me to write about their Dateline episode on child growth attenuation. This was honestly the most complex, emotional thing I've written, and I was scared to put my opinion in this article

I also wrote about the problems with the film Me Before You, after attending a protest against it. This was for SBS Life as well. 

I also wrote about that film, and the wider topic of media representation for Access 2 Arts in September. 

July saw the mass murder of 19 Japanese disabled people, and I asked why no one was talking about it  I wrote this when I was very unwell, and it was published while I was in hospital. It was shared more than 76,000 times. 

Madeline Stuart featured at New York Fashion Week in September, and I interviewed her mum for Ramonaf  (and used this in a bigger article on the blog).

In October there was another murder of disabled people - this time children, and I wrote about the media coverage and social media reaction.

I wrote about the 11 year old who is making public transport more accessible. This article was for Kidspot. 

On 3 December, for International Day of People with Disability, I wrote for the ABC about navigating the medical system with a rare illness


Me in the media 

I've also done a lot of media, being invited on podcasts and radio programs, and occasionally being interviewed for articles. 

In January I was featured in The Age. The article was on slacktivism. 

Following this article, I was invited into ABC 774 to discuss inspiration porn

A few days before I got married, Clare Bowditch invited me on her show   

I was on a panel talking about disruption at She Leads in Canberra in May and featured in a related article in Women's Agenda

Steve Molk asked me to be on the Humans of Twitter podcast

That same week I recorded the Aussie Boggers Podcast.

There was a lot of media around the Me Before You protest and I gave interviews to  The ABC World Today and ABC News and was quoted in  Sydney Morning Herald.

I provided a comment on ableist language for Kidspot. 

I chatted with Jenny on the Fully Sick podcast.

Tara Moss asked me to write a passage in her book

I also chatted on the Osher G├╝nsberg podcast in November. 

The best of blogging 

I've been blogging a lot less this year, but my readership has gone up.  I've found my niche, but some pieces are just to remember what happened at that moment in time. Thank you for being my audience.

Some of my favourite, and most read posts of this year are: 





#FashionAngel - inspired by the photo shoot from The Age

My hens crafternoon - so much fun!





Me Before You - disability as a tragedy - I sat in the movies under a blanket to live tweet my thoughts from this!






Ichthyosis in India and Africa 





I also started a podcast with Jason. It's called Refeeshments Provided and you can listen here.

Thank you for being a reader, for sharing my work and for telling me I've made you think. It means a lot that you here (or elsewhere) to read my thoughts. As mentioned, if you'd like to buy me a drink, you can do so here

Thank you, and happy birthday to me! 


05 December 2016

My face scared my cleaner away today

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Has this blog helped you or made you think? Why don't you "buy me a drink" by contributing to my Patreon? Or better still, hire me to give your company some training in diversity. Thanks! 

Two pieces I've written for the media on the weekend - ABC and Kidspot

Last week was huge. Busy, so busy. Between day job and freelancing, I wrote seven articles for the media. And here are two of them. 

I was invited to write for the ABC (our national public news service) which I was so excited and proud to do. This is the first in a series about disability and health. 
 

The article is about navigating the Australian healthcare system with a disability, and provides some tips to doctors. 

"My pointers for health professionals: 

  • Listen to us. You can learn as much (maybe more) from our lived experience as you can from a textbook.
  • Talk to us about our whole lives. It can be uplifting for a doctor to be excited about what's happening for us, away from our conditions.
  • Don't show too much excitement at treating a rare patient for the first time.Sometimes that feels like you've won a prize.
  • Let us help others who may be struggling with similar conditions. Invite us to speak at medical events or put us in touch with families.
  • Mind your language, especially if you're a doctor who writes for publication or uses social media. Terms like "healthcare burden" are really damaging. Also I don't "suffer from" ichthyosis, I "live with" it.
  • Take a step back to reflect on how far your patients have come, because of the treatment and empathy you've shown. Many of us we owe our lives to you. Thank you."
Read the article hereand contribute to the discussion here

The other article was for Kidspot. It's my response to a Mamamia article that I felt was a shallow whine. The writer couldn't find her makeup to wear to work, and so had to hide. I address the beauty privilege of the people who are afraid to go makeup free, and the expectation to wear makeup. I make no apologies for my views on this. 

 

"Minutes before I read Jessie’s article, I’d watched a harrowing piece on Lateline that told the story of an intellectually disabled woman who had been sexually abused by 10 people through her life.

Later that day, as people were telling me how judgemental I was for my reaction to Jessie’s article, I found out a newborn baby in Bangladesh was killed by village men because it had Ichthyosis - the same rare severe skin condition as me. They were scared of its appearance and thought it was cursed. It was no wonder I thought Jessie’s worries about not having makeup to wear to work was shallow.

I’ve found the people who are applauded for going makeup free (like Alicia Keys earlier this year ), or feel afraid to go out in public are the people, or participate in no makeup challenges (radio host Kristie Mercer did a year ago) almost always meet conventional beauty standards. They’ve got a beauty privilege."


While I don't believe people with facial differences and disfigurements should be teaching lessons for those like the Mamamia writer, I do hope she and others take something away from my perspective. 

Read the article hereand chat about it here

I hope you enjoy these reads as much as I enjoyed writing them. 

Have you listened to my podcast yet? Tune in to Radio Carly by listening to Refreshments Provided

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