20 August 2014

Please support the Disability Voice campaign.

A couple of months ago I went to the Save ABC Ramp Up protest outside the ABC studios in Southbank. There were about 25 of us protesting - chanting and waving signs, and the media covered it. There was a strong sense of unity. We will not be silenced. I was a proud writer for Ramp Up and believe it was an integral part of Australian media. And I was a proud protester - taking a risk in publicly standing up in what I believe in. We wanted Australia's mainstream disability website to stay.

The protest didn't keep Ramp Up alive, but it got the Australian media and public take notice.

(Link to article)

There's a gap in the mediascape - we're in need of a disability voice. We need diversity. And so now disgruntled members of Australia’s disability community are channelling their outrage at the closure of ABC’s Ramp Up website into a crowdfunding campaign to create a new and independent media outlet aimed at providing news and views about and by disabled Australians with disabilities. Central to the campaign is a controversial YouTube video which shows a woman in a hospital bed being gagged by her nurse.

Dr George Taleporos, co-producer of the crowdfunding campaign wanted to bring attention to the silencing of the disability community that had resulted from the axing of ABC Ramp Up. The former contributor to ABC Ramp Up, recently led a protest at the ABC studios that ended with protesters being escorted off the premises by police.

Banking on a successful crowdfunding campaign, the new site will provide paid employment opportunities for people with disabilities by commissioning content and engaging members of the disability community as expert commentators on issues that matter most to them. And you know my stance on not working for free.

“We are determined to bring back to life this crucial advocacy tool for the disability community and for the wider community to hear our voices and our perspectives" said Rachel Croucher, co-producer of the crowdfunding campaign who has spent the last four months in hospital as a result of inadequate services in the community.

“The 1000+ strong ‘Save ABC Ramp Up’ Facebook group shows our community's commitment to fill the void left behind by the failure to renew funding to Ramp Up and its subsequent axing, and our team wants to harness that commitment and enthusiasm to build a new and independent media outlet for people with disabilities to provide commentary on issues that affect us.”

Croucher is hopeful that this initiative will bring the voices of Australians with disabilities back from the wilderness, thus enabling them “to make our voices heard at a time when our voice needs to be as strong as ever.”

Crowdfunding allows many small donations to be collected towards a funding goal. Please consider contributing to this cause. To contribute go to Start Something Good.


 

18 August 2014

Feeling like a freak on the opposite ends of the spectrum

I've felt like a freak on opposite ends of the spectrum - by strangers, and by people I expect to care for me. I define the meaning of freak - based on my own experience - to be stared at, unwillingly on display for others to gawk and laugh at. I've also felt like a freak in the world of medical voyeurism.

I always feel like I'm in the strangers' gaze. They look at me, turn their heads, wondering what they just saw. They stop, mid conversation, forgetting what they were saying and their mouths wobble, like deflated bicycle inner tubes. I notice the upnods - look over there, look at her, the sniggers, the whispers and the blatant oh my gods. I've learnt not to notice it as much, but when I do, it still gets to me.

Adam, my fiancé, says he's noticed how much strangers stare at the different since being with me. He said he notices people's faces, they say "she looks weird" without verbally saying it. He doesn't tell me when he hears people whisper, but I can tell as his grasp on my hand gets tighter and he steers me away from the ignorant. Walking with him is like seeing stares through others' eyes.

Mum tells me people have gawked at me since I was a baby. I was born in a small regional city - and I imagine back in 1982 it was safe to leave your baby with a stranger while you ducked into a shop. I was - and still am - high maintenance. One day when I was a few months old, mum had to duck into the chemist to get some cream for me. Because it was hot/I was crying/sore/high maintenance/she was very trusting, she didn't want to take me into the chemist, so she left me with a stranger across the road. She told me that when she returned to me in the pram, a group of strangers were peering into the pram, looking at this red baby. Til then, they'd never seen anything like it.

And so it continues, all through my life.

Once, a man brought his whole family to a window, to see me eating inside a restaurant. They stared at me from the outside - faces pressed to the window like I was inside a glass cage at the zoo.

Teens have photographed me on a train, holding their phones up above their heads, hoping to catch me in the lens. They sniggered amongst themselves, probably texting them to their friends, until me and an onlooker saw them and said something.

One night I was walking to a restaurant on the south side of the river, a suburb I rarely visit. It was a Friday night in mid spring, and there were groups of friends enjoying drinks before dinner on the pavement. A group of men had a dog at their table - not a friendly welcoming dog, but one that barked and snarled as I walked on by. "Good on you", a man praised the dog. "Bitch deserves to be snarled at", he said.

When I finally got to the restaurant I didn't tell anyone there. Who could relate? It was far from a wolf whistle. But it was just as degrading. With comments like that, I long for a wolf whistle.

Most recently, my photo was misused in a voyeuristic online forum where my appearance was ridiculed, diagnosed and threatened by hundreds of strangers. It felt like I was no longer in control of my image - something that I've been proud of achieving through blogging.

I want to take you to the other side of the spectrum. I used to go to massive medical conferences. I was a patient. A teaching example. An exhibit. Doctors would sell the conferences as a means of research, so one day there might be a cure for my condition. My parents, understandably in search of a cure, gave up our time to attend these conferences. They were no buffet lunch at the Hilton with sample bags type conferences. Well at least not for the patients. They were held in a hospital, sometimes in a large conference room partitioned by makeshift cubicles, and sometimes in consulting rooms. They were really just training days for the doctors with very poor bedside manner to make clinical diagnoses.

It was like we came to life from the textbook pages - dermatological specimens, labeled by our conditions, never by our names. Also, I've been snapped by medical photographers - my face is probably blacked out in a textbook somewhere, my body scaly and self conscious. All for research.

The conferences started off being a novelty - I could get away with being cute as a little kid, charging the doctors money for a look. But as I got older, more conscious of my pubescent developing body, and longing to be treated well by everyone I encountered - because doctors are professionals and this wasn't the schoolyard - it became overwhelming. The conferences welcomed international doctors, many of them didn't interact with patients directly, many of them didn't interact in English. They communicated with points and pokes and nervous laughs.

My body is constantly in a state of temperature confusion, so it was uncomfortable. I was on display. I was able to wear undies, a blanket and one sock. Cold hands touched my body and pulled at my hair and conferred amongst themselves. Cold voices, and laughter if they couldn't understand my English.

The last conference I went to was over half a lifetime ago. I will never go back. I contribute to research in other ways. I take control of how my body and medical condition is viewed.

The word freak has negative connotations. Because I've felt like a freak in a strangers gaze. I'm rarely looked at for my beauty or even intelligence or persona out in this context. And the synonyms for freak make me uncomfortable.

We're not Freaks. Spastics. Retards. Derps. Special.

We're not the words that you spit out in disgust.

They're all words I hate. Labels. Some people choose to embrace them, but I choose to leave them out of my life.

We're not here for your entertainment,

For your eyes to be glued to your screens watching reality TV.

Or for your fingers to type out words of mockery on the World Wide Web.

And nor are we specimens, zoo animals, science experiments.

We're rare, we're different looking, we're medical marvels, but we deserve more than this.

 

14 August 2014

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."

11 August 2014

How I cope with Ichthyosis and working full time.

A few people with Ichthyosis and disabilities have asked me how I maintain a full time job and how I talk to my managers about my condition. So here's my employment story.

I have always wanted to work. I think working is very important. Working has helped me become more confident. Working also helps me feel valued. I also enjoy the social interaction. And it allows me to live the life I want because I earn a wage.

I've been sore for the past six weeks or so. I have been in hospital, had a full week off and days off here and there. Every morning when I wake up, my skin is in pain. It exacerbates in the shower and through the day it gets tighter on my legs, and weeps. One afternoon recently I was feeling extremely sore and told my manager that I was sore and I'd leave a little early to rest, and asked if I could take my time starting work the following day. I don't want to speak to soon but I had a half hour sleep in the next morning and didn't rush for work. I felt one thousand times better and less sore than I have done any morning (or day) these past six weeks. Here's to rest and a supportive workplace!

On perceptions

Sometimes I feel I have to prove I am not just a red face. I have to prove that I can work hard, that I am smart and educated. I am very outspoken and don’t let my appearance hold me back. I am also mindful of the perceptions of having an illness that appears the same to my colleagues every day. While my face might be the same level of redness each day, my level of pain differs from one day to the next. I might be smiling but I'm in pain. I might have been well yesterday but it's hard to walk today. I worry about the perception of sick leave – what if I feel fine one night when I see a band but wake up the next morning with awful painful infection (due to no fault of my own)? What will my colleagues that don’t know me so well think? It's hard.

My first job

My first job was a casual role at a large department store. It was a big boost to my confidence. I worked at the store for over three years while studying at university. Work was so different to school. I made many lasting friendships. I often wish I had started working in a casual job sooner.

My first job helped teach me professionalism. It was obviously a very public role and I was faced with constant questions about my illness. I grew more confident in handling these questions. I was always careful to represent the store professionally while also ensuring I was being respected.

Once I was called a “lobster” by a customer while I was in uniform. This upset me. But I was unsure about whether I was allowed to respond. The store manager and I discussed my situation. He gave me permission to tell someone that I did not want to serve them if they were rude. It was reassuring that my colleagues were willing to stand up for me.

My day job

I work as a public servant - I have done for 11 years. I have chosen this employer for many reasons including the leave conditions and diversity policy which is accommodating to my condition. I don't have any physical workplace modifications as such - except I do get a new keyboard and mouse regularly because of the germs - but I do have modifications that involve understanding and flexibility - that goes too ways. When I'm at work I put in 110%. When I'm not able to, my workplace understands.

I have access to flex time at the public service. I use this to attend scheduled hospital appointments so it doesn’t eat into my sick leave. If I wake up sore, text my manager telling them I’ll be late and take my time getting into work, and leave early if necessary – again, taking it off my flex balance. By not pushing myself to do a full day, I am looking after my health, allowing myself to rest and recover, saving me (and the workplace) sick days.

I have also been able to obtain a long term doctors certificate for a recurring illness to use for five days of sick leave a year – while it’s not additional sick leave, it means that I get an extra 5 days where I don’t have to go to the doctor to get a certificate for my recurring illness. Proudly, I only had 12 days of sick leave last year – and about 8 of those related to my skin.

I learnt that not every job is for me, even if it is office based. I knew that I couldn’t be a marine biologist or a doctor because of my skin, but I never thought an administrative office job would be challenging.

I have had roles where my health suffered. For example, I found it difficult to cope with tight service standards. I often had to take leave for hospital appointments. There were also sometimes unplanned leave when I could not work because of my illness. My absences made it difficult for my colleagues because my work would pile up. Sometimes I would be questioned about why I was taking so much leave. Those experiences brought my confidence down. My health also worsened. I had to take time out and get the support I needed.

Once I found a role that suited my interests and skills - and a bonus to have amazing managers - my health improved so much. There's a saying that if you enjoy your work you'll never feel like you're working. And my career has been that way for years now, give or take a few months.

One of the best things I have learned in my career is to be upfront about my disability. I've told my managers and colleagues what it means for me. I have also talked about my limitations and (most importantly) my strengths. I have told them that there are hospital appointments I have to attend. There will also be days where I am not well enough to come to work. They understand that.

I have made a decision to be really open about my condition and needs. I acknowledge that disclosure is optional but in my experience, disclosing my Ichthyosis (there's no choice not to!) has helped. When I get a new manager, I talk to them about my skin, what it means for me and what it means for them as a manager. I've given them medical and anecdotal evidence about my condition and invited any questions. I also let them and the team know when I'm leaving for hospital appointments. Regular hospital appointments (bi-monthly) are generally scheduled first thing in the morning or towards the end of the day so I can go there straight from home or from work.

I only take sick leave when I'm sick - because I can't afford to waste it. For many years now my sick leave used to run out and I'd use annual leave or purchased leave when I'm sick. The supportive workplace and enjoyable and suitable work has meant that I'm able to roll over my sick leave. Yay!

I've also become involved with diversity and disability initiatives in my workplace.

Freelance work

Freelance writing and speaking is work too. And I feel super busy - always. I come home from my day job and work.

I prioritise my life (in relation to work) this way:

1) My health

2) My day job

3) Every other commitment.

If I'm not well enough I say no. If I can't make a deadline outside my day job I say no. I hope editors and blogging partners understand.

I'm also mindful not to be perceived to be doing other work while I'm on sick leave from my day job. My own values dictate that I'm always seen to be doing the right thing when it comes to my day job - after all they pay me so I can do all the other fun stuff. I will do a little social media for myself at home, but generally I don't blog about big issues or write or speak for others when I'm unwell. Lately I've been organised enough to have a heap of posts batch-written and guest posts to go. So the pressure to produce blog content has subsided a little.

I've been careful to balance my day job with my freelance work, advising the media department of any publications I feature in, talking to my manager about my goals inside and outside my day job and also talking through situations where there may be a conflict of interest. I've familiarised myself with social media policies and public comment policies - and am mindful of these in everything I do. However I still have a voice - most recently attending a protest to save ABC Ramp Up - I was I interviewed on the news but made careful decisions about what I answered in relation to the protest and the importance of disability media and also government policies. It can be tricky.

On discrimination

I need to be careful what I write about here - but there has been times when I've felt very uncomfortable with peoples' reactions when they meet me. For quite some time I was 'the face' of my building, in a very internally public role. I never had overt reactions, but living with a facial difference for my whole life has meant I'm good at reading expressions and recoiling body language. I always go to shake peoples' hands and look them in the eye and haven't been afraid of leading a discussion or speaking in front of a workplace audience. One woman told me she couldn’t handle looking like me, but I laughed that one off and turned the example around and used it in a skit in my community TV work.

The times I have felt uncomfortable have been met with wonderful support from managers and peers after I've spoken up. As I said earlier, I'm fortunate to work somewhere with a diversity policy.

Balancing it all

I make lists, schedule hospital appointments in my calendar and try to prepare food for the week on a Sunday. I am a big believer in eating well to be kind to my skin, boost immune system and maintain energy so I take home made lunches to work - so I know what I'm eating. The slow cooker gets a lot of use in winter!

Resources

Changing Faces' What Success Looks Like initiative has got some great resources about talking to your employer about your facial difference - which can apply for all types of disabilities I think. It also has some tips for employers when interviewing and working with people with facial differences.

The National Disability Recruitment Coordinator and Australian Network on Disability are also great organisations who support employees with a disability and their employers.

Top three tips

Look for employers who are supportive of diversity.

Choose a job that suits your health. Consider the pressures, the shifts, the type of work. Go part time if needed.

Be upfront about your disability. Disclosure is optional but it can also lead to better support and understanding from your employer.

Footnote

I'd like to acknowledge just how hard it can for people with disabilities and chronic illnesses to get into the workforce. The physical and attitudinal barriers are astoundingly disappointing and there's a distinct lack of opportunity. There is still bigotry and fear around disability. I really hope the barriers to employment are lifted in my lifetime.

Tell me: have you experienced barriers to employment? How do you talk to your managers and colleagues about your disability or illness? Are you confident to?

 

09 August 2014

My blogging and brand journey.

 

Yesterday I chatted to Kate Larsen - director of Writers Victoria and a researcher from Melbourne university about blogging and advocacy and the importance of storytelling for people with disabilities. I was asked what have been the challenges of blogging. One thing I mentioned was the lack of brand engagement with my blog.

While I've always maintained I don't want to innundate my blog with sponsored posts, and I make some money away from my blog writing and speaking, I am overlooked by brand campaigns and blogging talent agencies or declined when I do pitch to relevant brands. It's not sour grapes or discrimination, but I feel it is exclusionary. It seems a disability blog is not sexy, no matter the high level of page views or social media engagement I have.

I'm attending Problogger in three weeks and all attendees were invited to pitch for a brand workshop. I expressed concern that the brands might not want to work for me because of my content (appearance activism, disability advocacy). But I was encouraged and guided by the PB staff to pitch anyway, taking into account my community and the direction of my life - hello wedding day! I did lots of work in analysing my audience and writing about how the brand and I would be a good fit.

I'm so pleased that my pitch was successful. And I will be spending time with a brand that I never imagined - all because I enjoy wearing lipstick now and have had a few manicures and want to find some beauty inspiration for my wedding day.

I love that blogging can take the journey of our life and we're free to try new things. We're not bound to write about what we did on day one, because we grow and become interested in new things and build amazing communities. Our blog and its content can develop as we do. And aside from working with the brand there, I'm even more excited that I was asked to speak about activism through blogging. Well balanced, I think.

Adam's response: "first you won the mummy blogger category at the awards last year and now you're a makeup blogger?! Who are you?!"

Hugely thankful to the Problogger team for believing in me.

 

07 August 2014

So beautiful.


My love, he's got this joke with me. It's a play on everyone who intrusively asks me about my face.

"What's on your face?", he says.

Then he adds, "Oh it's just beautiful."

And boy do I smile when he says that. I am the luckiest.

I don't need anyone but myself to make me feel happy with my appearance. But it is amazing knowing and seeing how someone else sees me. It's such a joy to love and to be loved. And I love how it shows. This isn't vanity. It's seeing myself as my love sees me. When I see a photo he's taken, I see the beauty he sees in me.

How wonderful that a camera can capture that - I thought only a human could, not a machine. I thought that beauty was fleeting, merely dandelion fluff that can never be caught.

I read a blog post by a woman who wrote about how she was 'exposed by her children for what she really looks like'. She wrote about how she wasn't comfortable in her own skin, but her children saw such beauty. She was the beauty queen in their eyes. The way someone who loves you sees you is often poles apart from how you see yourself.

I never thought someone could stare at me lovingly when I have skin hanging off my face - when I'm the bearded lady that you never see here. I've been so sore lately and he's seen all of it. My wincing and asking for panadol after a shower, me delicately tearing the stockings off my legs, leaving perfectly straight wounds and tiny drops of blood dotting them like rubies. He's seen me cry in pain and want for this to be better again.

We write each other cards. I left him one on his pillow - with an illustration of two rabbits on the front, the caption "you're gorgeous". Because he is, and I could stare at him all day. Inside I wrote a thank you note, telling him that without him I wouldn't be able to smile through this pain without him.

Darren Hayes is right when he sings "you make me feel so beautiful". Because even on my sorest days, when I am in my pyjamas, braless and have knotted hair, my love looks at me like I'm his world.

 

04 August 2014

What is it that you'd like to know?

While I've got a heap of blog posts in draft (so many ideas!), and I mostly write because it gives so much back to me, I do wonder what I can give back to you, my readers.

It's often Facebook discussions or questions I get about Ichthyosis that inspires me to write a blog post. I think, if one person is curious about how I manage my scalp, are others too? Also, they're great prompters for when I have writers block.

So today I ask you:

Have you got any questions for me? Maybe you are wondering about how it was getting a job and looking different, or how I go trying clothes on in shops (I hate it!). Are you curious about how I handle bullies? Am I angry about having Ichthyosis?

They don't even have to be questions about Ichthyosis. Maybe you've got a blogging question. Or a cooking question?

I'd love to know what you'd like to know! Your questions and comments always help me create good content.

While for the most part I write for myself (knowing there is an audience out there) I'm so proud that my blog is a resource for people affected by Ichthyosis. I love that when I get asked a question, I can usually send someone a link to my blog and they find it useful.

Please ask me a question in the comments section or on Facebook or Twitter or Insta, and I'll do my best to answer it in a blog post very soon.

Thank you so much for continuing to read and support my little place on the Internet.

 

02 August 2014

Taking stock.

There are cute little assignments on the Blog With Pip course - they don't feel like study assignments. Sometimes when I want to write but I don't have the energy to put all the words together, lists are good to get started. Little bits of writing get me thinking. Like this one: taking stock.

Making : I made a terrarium the other night! I was so lucky to be a guest of Inner Sanctuary Design - Samantha showed a cafe full of eager green thumbs how to create a cute terrarium. It's brought new life to my desk. Cute and fun! I want a figurine to live in it :)

(Disclaimer: I was a guest of Inner Sanctuary Design - coordinated by Nuffnang. I didn't pay to make the terrarium but I did buy my own food and drink at the cafe.)

Cooking : warming comfort foods. Earlier this week I made twice cooked ham hock with the ham bone from pea and ham soup. I cooked it in a glaze of cider, brown sugar, cinnamon and cloves, served with mashed potatoes (Adam is the mashed potato king of our household!) and red cabbage sauerkraut. Amazing.

Drinking : Elderflower cider. It's $7 for four at Dan Murphys. So yum!

Reading : Making is Connecting by David Gauntlett. It's about how the Internet fosters creativity and brings people together.

Wanting : to tell you some amazing news about an event I'm involved in. Soon, I promise!

Looking : at wedding themes on Pinterest. I'm excited about the decorations! I want a million little bottles of flowers there.

Playing : episodes of Catfish and Mr Bean on iView and YouTube before sleep. So good!

Deciding : on a wedding date. We have a venue. A perfect venue.

Wishing : I wasn't so sore. Enough already.

Enjoying : my day job. I love it. And I get to use what I do here there!!

Waiting : 'the waiting for you dance'. It's so funny living with a man. I was on the toilet one afternoon and I heard some shuffling feet. And when I got out, Adam was dancing - feet moving on the tiles and hands in the air. I asked him what he's doing. "The waiting for you dance", he said. He dances while he waits for the loo.

Liking : Lorde's Pure Heroine. Cannot stop playing it.

Wondering : when I will feel back to my normal. I'm so very sore.

Loving : Adam.

Pondering : what goal I set next? When will I get the time to implement these goals?

Considering : my outfits for Problogger. I like to be prepared. And I'm looking forward to some Queensland warmth.

Watching : The Time of Our Lives on ABC TV. Justine Clarke and Shane Jacobson (Bernadette and Luch) are my fave TV couple. Every episode is filled with great dialogue, music and fashion too.

Hoping : that my scarf will still be at the post office after I left it there. This striped scarf has been left and collected so many times. Nine lives like a cat.

Marvelling : at winning dinner for two at Prix Fixe on Thursday. I retweeted their tweet and bam, Thursday afternoon I got a text saying I'd won. Dinner was French, amazing. Four courses which included choux pastry filled with bechamel, red wine poached egg, duck a l'orange, truffle Camembert and passionfruit chocolate cake with gold flecked sorbet. I felt like Julia Child.

 

Needing : to get back to the gym. I'm craving those endorphins. When I'm less sore, of course.

Smelling : beautiful scented candles. I bought a lemon friand one from Finders Keepers the other weekend. Smells just like baked lemon friand.

Wearing : my thick purple coat in the picture above. I got it in NYC two years ago. Northern hemisphere coats are much warmer than any I've bought here.

Following : Sophie Monk on Instagram. Funny. Also following a few wedding planning groups on Facebook.

Noticing : that I'm better at living with someone than I thought I'd be.

Knowing : I am loved. And it's the best feeling.

Smelling : beautiful red roses in my kitchen.

Thinking : about how much has changed in a year. And how much good I've made come into my life.

Feeling : pain like I'm not used to.

Admiring : Lauren Moss, my amazing friend I met via The Skin Deep Project. She is kicking goals - she's a finalist for the Australian Women's Weekly Women of the Future initiative. We had dinner in the week and chatted about goal setting and our role models and leadership and she is so brainy.

Sorting : the Blog with Pip course has inspired me to pretty up this blog and I want to sort that out soon.

Buying : merino jumpers and spencers. So cosy.

Getting: a present! Adam bought me this bangle from McKean Studio. It's the Paris skyline.

Bookmarking : How Ira Glass works. He's the host of This American Life. I love that podcast.

Disliking : Instagram accounts that are selling me something. I don't know whether people are hashtagging brands because they've been given something for review or because they're wanting to catch that brand's attention to get free stuff or because they bought the product.

Opening : my new iPhone! I'm not one to update my phone every year or at the end of a contract, but my current is not working well and I wasn't getting messages or able to take photos (maybe as I'm a digital hoarder!).

Giggling : over episodes of Mr Bean. But gosh he was a mean-hearted man.

Feeling : content.

Snacking : smoked cheddar cheese. It's amazing.

Coveting : a new MacBook Pro.

Wishing : for world peace. Because there's so much awful news out there. I'm no Miss Universe though.

Helping : answer people's questions about life with Ichthyosis. I love getting questions about my experience and passing on what I know, do and feel.

Hearing : my body telling me to slow down. Rest will heal. I hope.

 

31 July 2014

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.

 

28 July 2014

Why I write.

I write because I love it.

I write to tell the world my story. I write to be published elsewhere.

I write because I love seeing the blank screen turn into something that others enjoy reading. It's like packaging my thoughts and sending them out to the world to help others.

I write to change people's perceptions of what it's like to look different, to influence situations like being abused by a taxi driver and then helping change the driver education, and having my photo misused on Reddit and responding to those trolls.

I write to think things through. And once I've written it, I don't have to answer to anyone. While I may have put an opinion out publicly, it doesn't mean I want to discuss my content on demand. A blog post is as final as I want it to be - though I do enjoy the comment banter and often add to the conversation after my blog has been published

I write to learn about myself. And boy have I learnt about myself since I started this blog. I've learnt my strengths and weaknesses and how to be outspoken and how to take criticism and how to be confident. I've learnt how to be a responsible public servant and social media user. I've learnt to put myself forward and not to get down when I don't get opportunities.

I write for myself but I am mindful that the more readers I have, the more I try to put out consistently quality content. And often I get stage fright, performance anxiety. I procrastinate because I don't think the words will be good enough. Hell, I took ages writing this post, saying out loud "now I will write".

I also write to learn about others. I leave anonymous comments on because I believe there are more good people than bad out there and the anonymous comment option makes people feel safe enough to reveal something about themselves on the internet. I love how me telling my story empowers others to tell theirs. I love how my readers share a piece of themselves in their comments - or identify with what I've written because they have experienced similar. And I'm so thankful.

How does my writing differ from others in it’s genre?

There aren't too many Australian chronic illness blogs that I know of. Those I do read are beautifully written and so powerful. I sometimes feel like we are in an under recognised niche - ignored by brands. But then I realise how much we are helping eachother and our readers with chronic illnesses and disabilities. We've got readers that span across all genres of blogs. And we really make a difference.

I'm doing this amazing course run by Pip Lincolne. It's aimed at newbies but I'm doing it with view to pretty my blog up, learn some new skills and meet a brand new blogging community. And it's fun! In my homework, I did a little task about why I blog. Writing validates our being and written goals keep us accountable. Here's some of my homework task:

What can I bring through blogging?:

I can bring honesty, authenticity, humour, advocacy and activism though my blog.

My ideal readers are:

A new mother with a baby born with Ichthyosis.

A teen or an adult who has felt alone because of their Ichthyosis or visible difference,

A person who had reservations about talking to someone who looks different.

Someone who enjoys good writing.

My readers will feel:

Less alone, relieved they've found someone else experiencing this rare condition, uplifted, educated, informed. A changed perspective about people with visible differences.

Blogging will make me feel:

Less alone. Uplifted. Part of a community. Gathered my thoughts. Blogging is therapy. Excited to do a doctorate in blogging empowering people with disability.

What am I working on?

I am working on blog posts and freelance articles. I'm also working on some speaking points for the MWF and PBEvent plus some other talks I have coming up.

I should be working on my memoir manuscript and getting invoices for writing done.

Why do I write what I do?

I write about myself and my condition to remove the sensationalism that surrounds Ichthyosis. Writing is cathartic and it brings me support from readers who are experiencing similar. Writing a blog also means that I can control the level of information I put out there (and that the public isn't misinformed about my condition).

Sometimes I worry that through so much writing and speaking about Ichthyosis, it defines me in a bad way. This has been hinted at by some people. But identity is important, something to be proud of. And writing about my Ichthyosis and appearance so candidly has helped me feel a part of a community and feel more confident than ever. It's also opened up more opportunities than I could ever have imagined.

The more I write about appearance diversity, the more I want to learn about it. It's interesting and diverse and it's my niche.

There will be critics, and perhaps I'm sensitive to them because I love and am proud of what I do. But I try not to let them weigh me down. I just keep on.

Writing a personal memoir in blog form can be viewed as very narcissistic and self indulgent. It is, I admit. It's nice to have the time to write about myself (and even nicer that people read it, and also pay for my words). I really like this article that Todd sent me - confessional writing is not self indulgent.

How does my writing process work?

I sometimes batch write blog posts on a Friday or Saturday night – usually over a glass (bottle!) of wine and by the fourth glass, my writing gets more animated! I schedule my posts for 7am weekdays. I write a lot after I finish my day job – maybe two hours two or three nights a week, and if I haven’t finished something I wake up early and write before work. I try to set aside three hours on the weekend to write too – either freelance articles or blog posts. I write in my day job too – a different type of writing though. I use my iPhone and iPad notes function the most. They are synced so I can pick up where I left off anytime and anywhere. I often write whole blog posts or articles using my phone on the train to work or while I am waiting for a friend. I don’t often use a computer. Sometimes I handwrite notes for myself but most of my writing is electronic. I’ve always got drafts on the go.

If I'm not well (which has been recently) I can usually still write, but I will do less of it because I am worried about the perception - if I'm home from my day job, how can I be well enough to write freelance, or even for my blog? I don't apologise for not blogging - I wrote about that last week. Life gets in the way.

If I'm really tired and think I should blog I will just post some pictures of travel or street art. I will also develop a Facebook status I wrote about something I'm passionate about. Sometimes if I write a FB post that gets a great reaction (conversations and likes) and I quite like the topic I've posted about, I convert it into a blog post and write more about that topic. I did a few of those on holidays where i was too tired to blog but just wanted to get something written about my day. I copied my FB post into my mac notepad and then developed a blog post at a later date. Worked well!

I've also got a lot of guest posts to edit and schedule - these work well when I am busy or sick, but they are usually more work than a blog post I write from scratch because of the editing, writing a lengthy introduction myself and follow up with the guest poster.

-

The Why I Write blog hop was passed to me by Lisa who blogs at Country Gypsies. Lisa is a single Mum of two teenagers, and a primary school teacher, who left Sydney six years ago for a tree change to the Southern Highlands Of NSW. Her family loves to travel, with their aim being reviving an old vintage caravan into a retro style and heading off on a big road trip. A good dream! She likes to say her writing is champagne comedy on a beer budget!!!!

In the spirit of showcasing brand new bloggers, I'm passing this on to two of my Blog With Pip classmates: Tash and Jade.

Tash writes at Stuff From The Suburbs and often posts about all of the imporant things-hair cuts, how she always knew Thomas from Offspring was no good, the awkwardness of going to a singles night-that pops into her head at work when she should be..ahem..working. She also occasionally writes about dealing with depression and anxiety too. She gets told to use her 'indoor voice' quite a bit, and can tell you where the good places are to find a good Iced Coffee in Ballarat, where she currently lives. Tash is also uncomfortable writing about herself in third person.

Jade is a naturopath from Sydney who blogs at Thyme and Me. She has a strong desire to make natural medicine more user friendly for everyone and show just how effective it can be.

Go say hello to Lisa, Tash and Jade! They'll be sharing why they write soon.

And tell me, why do you write? Why do you read blogs?

 

26 July 2014

Where I want to be. Melbourne Writers Festival and Problogger.

It takes lots of hard work and a few years to 'make it' in blogging.

People new to the hobby/profession think it will be easy - bang out a few posts and bam! You'll have thousands of followers. It's not like that. It is a steep climb. After four years of having a Facebook page for my blog readers to connect with me, I finally reached 2000 likers last week! Some days I have 250 views, other days I have 2500 views. It's about making friends and professional contacts in the blogging and writing and appearance diversity worlds and nurturing these relationships. And it's about putting in the hours, on top of my day job.

Pleasingly, I have found my niche and am kicking off the little goals I've made for myself. These goals are all about being recognised for my writing and my commitment to appearance diversity. I feel like I'm where I want to be.

And today, I've got a few announcements that I want to share.

I am excited to announce that, after years of being an audience participant at the Melbourne Writers Festival, I am a presenter at this year's event!

I'm talking about modern memoir writing with four other writers. I love how blogging is seen as memoir writing and is taken seriously enough to be discussed on this panel.

Come to my panel - Oversharers Anonymous - at The Toff In Town on 26 August.

Secondly, I'm also excited to announce I'm speaking at the Problogger conference on 29 August. Problogger was so great last year - evangelical even.

It's sold out but there will live tweeting like last year (I think the hashtag will be #PBEvent, so keep an eye out. I'm talking about blogging for social good with Emma Stirling, Eden Riley and Stephen Ellis from World Vision Australia. Here's the session guide. What a panel! If there's anything you'd like me to cover on the day, just ask.

I am thankful to Lisa Dempster from MWF and Darren Rowse from Problogger for having me at their events. And thanks to Emma Stirling for choosing me on the panel. And I'm thankful to my amazing blogging community for helping me get there.

 

24 July 2014

In sickness and in health

After I came out of hospital earlier this month, Adam would sit on our bed and tuck me in, making sure I was warm. He brought me my antibiotics on time, and breakfast in bed too. He carefully pushed the hair out of my eyes, cupped my face in his hands and kissed me. He would let me sleep in so that my shower was warm and bring me breakfast in bed. The love in his eyes was so sparkly. He's with me in sickness and in health.

Getting used to my skin has been a challenge for him - and for me. I wrote about the adjustment here. I've never been more aware of my skin than when someone else tells me how it looks and feels from their perspective. It's been snowflakes on undress and the bearded lady in the morning. It's been confused temperatures and surprises at my voracious appetite. He's held my hand through blood tests and cannulas and seen my legs bloody and raw during infection. Still, he's stuck by me.

The reality of Ichthyosis is that it's complex and needs explaining to new people. Just googling it is Russian roulette - there could be an image of a deceased foetus or an alarming statistic. And so this is why I tell my own story here, on my own terms - so people understand it better and don't take sensationalism as gospel. I never want to create fear around Ichthyosis. That fear creates assumptions and prejudice.

Friends with disabilities tell me the times when their partners have been praised for being brave.

Courageous for supposedly giving up an ideal life to be with them.

Saints for looking after them.

Confident for holding their lover's hand in the street.

It's a shame they're settling.

Fortunately none of those things have been said to me, yet. But I wonder if people are thinking that?

The last thing I want is to be a burden on my love. That's one of the biggest insults a person with a disability can receive. A burden. A liability. Dependent. A leaner. Like Graeme Innes (former Disability Discrimination Commisioner) writes, the concept of leaners and lifters is one that I don't accept.

While there's a certain amount of time he will spend caring for me when I'm out of action, the majority of time I'm very active - managing my own self care, working at my day job and writing and social media to pay the bills and for luxuries like clothes and travel, and enjoying life. I've built independence and resilience and budget for my medication and have chosen an employer with adequate conditions to cover my needs. I have managed. And we will manage together.

Of course there will be times when the roles will be reversed and I will be visiting him in hospital and cooking him chicken soup when he's congested. I'm with him in sickness and in health too.

Maybe I wasn't the girl he imagined he'd spend his life with. Perhaps I'm a little more high maintenance than he expected. But every day he tells me I'm beautiful and he loves me. And I love him. Together we will make it through.

As I wrote earlier this year, it will be hard but it will be worth it.

-

Adam writes cute poems for me, and this is one of his latest. I prettied it up through an app to treasure it forever. I am so lucky to have found this beautiful man to love!

 

 

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