03 August 2015

Embracing labels to shape our identities.


Labels. They’re a blessing and a curse to live with. Fat. Thin. Beautiful. Ugly. Smart. Stupid. Rich. Poor. Athletic. Lazy. Normal. Different. Disabled. Able bodied.

Labels are temporary but can result in our identities and esteem being damaged. We can peel off the labels that others stick on us. Or we can embrace them – let them become part of our identity.

I was never labeled as having a disability or chronic illness by anyone other than myself. I was called lots of other names relating to my appearance, but never anything relating to disability.

Disability seemed so much more than a rare severe skin condition called Ichthyosis. I don’t have an intellectual impairment and my mobility isn’t affected unless I am very sore. And I don’t take enough tablets to have a chronic illness. I went through life thinking that my condition wasn’t bad for me because I coped with it daily. It was only my skin, right? That’s just a visual impairment? Wrong. My parents, nurses and doctors knew how severe it was, and told me that if a skin infection reached my blood stream, it could be fatal.

It wasn’t until my mid 20s that I identified with having a disability and a chronic illness. I thought ‘disability’ and ‘chronic illness’ had really negative connotations – and why wouldn’t I when society makes ableist slurs, employment of people with disabilities is low and physical and attitudinal barriers are rife? I also never saw many positive, ordinary stories of disability in the media – disability is often portrayed as tragedy or heroic and nothing in between. There is a limited view of disability that’s portrayed in the media - limited conditions and limited expectations. And I thought that I had to be assessed by a doctor or the government to give me a label in addition to my skin condition – a label of disability or chronic illness? I didn’t realise how positive it could be to embrace these labels.

I started mentoring at a hospital program for young people with chronic illnesses when I was 26. I wanted to provide guidance and support to them, based on my experiences. But they taught me so much more than I was prepared for. I learnt about a wide range of chronic illnesses and I learnt about myself. We had so much in common despite our different conditions. I realised that like them, I missed a lot of school (and work) to attend medical appointments and stay in hospital. My condition also made it hard for me to make friends. I have more than three specialists. My condition has a really long, unpronounceable name. And it is more severe than a temporary illness like a cold or a stomach bug.

And then, a couple of years later, I immersed myself in the Melbourne disability community through writing and community TV. I saw that people with varying disabilities face the same sorts of questions, physical and attitudinal barriers and discrimination. My friends in wheelchairs receive similar, intrusive questions about their disabilities, just as I do.

Most recently, I discovered there is a vibrant and supportive community of people with facial differences.

Giving myself the labels of ‘disabled’ and ‘chronically ill’ has been very empowering. I feel great sense of belonging – and that’s as big a relief as a diagnosis is. It’s given me pride. I am proud to belong to an amazing, talented, diverse, passionate community that’s committed to improving the lives of others. It’s also given me the courage to speak up and say I can’t do something because of my body’s limitations, and call out discriminatory behaviour. My knowledge of the social model of disability has grown – and I’ve embraced and practice that. I’ve become aware of sensitivities around language which has helped me communicate better. I’ve taken control of my own health, communicating my needs to doctors and educating them during appointments and through speaking at medical conferences. And I’ve met some wonderful people who are disabled and/or chronically ill, who are affected by my skin condition, or who are allies of our community. My writing and speaking career has thrived. These aren't labels of convenience - these are part of my identity. 

Above all, I’ve learnt that it is ok to identify with having a disability and chronic illness, because these labels are not negative. These labels are permanently fixed to my identity and I am proud and feel included. Embracing these labels helped me to love myself.

This post was originally written for Melissa who blogs at So About What I Said. You can follow Melissa on Twitter and Facebook.

(That pic was taken by Pip.)

31 July 2015

What do you wish for?

Purple flowers in beakers

I saw a meme posted in a Facebook group yesterday morning. It said:

"A healthy person has a million wishes. A person with a chronic illness only has one."

At risk of offending a heap of people, I don't entirely agree.

I agree that a chronically ill person wishes to be well, free of illness and pain, and perhaps wishes for a cure. They (we?) wish for employment, stability, access to healthcare and understanding from others.

But I also think that a chronically ill person has - and is entitled to - many other wishes and goals. We can be ambitious in our careers, relationships, social lives and hobbies. We are multi dimensional, and shouldn't be limited by others' assumptions.

I don't wish to be cured but sometimes I wish to be free of pain (like today). And I also wish (and work hard) to one day be published by New Yorker Magazine, to speak at another international conference, to complete my phd, to write a book, to teach at a university, and to have a happy, long life with my partner.

What do you wish for?

(There were some great responses to this meme and question when I shared my thoughts on Facebook yesterday.)

 

29 July 2015

Parents blogging about their children with disabilities: it is a fine line between awareness raising and shaming.


Last week I took part in a fantastic Twitter chat around the power of disability stories. The chat was a part of the National Museum of American History, as a celebration of the American Disability Act. Participants were from all corners of the globe – such rich, inclusive and diverse conversation! Questions were asked about how we’d like to see disability represented in mainstream and social media. I said I’d like to see fewer stories about people with disabilities told by others. I want to see fewer stories of disability as a burden. I also said I want to see less of parents showing their child’s disability on social media until their child can give permission.

I felt pretty brazen tweeting those statements. There is often a divide between people with disabilities and parents, and also general bloggers and parent bloggers. And often I am scared to raise the issue because I feel like parents disregard the experience of disabled adults. Many of my writerly friends with disabilities are scared too. Deep breath. I don't want to create a further divide.

I read a post about how a child's disability makes her embarrassed (but it's ok, she embarrasses him too! And don’t all children embarrass their parents at some stage? When I was 12, I said the C-word at a dinner party!).And one blogger wrote a list post about why parents of disabled children are acing motherhood (compared to ‘millennial moms’). Motherhood is not a competition. To the reader, parents are heroes, and children with disabilities are burdens or inspirations.

Blog posts about children with disabilities being burdens or inspirations, or full of detailed information about the child’s condition, make me uncomfortable. I say this as someone's (adult) child with a disability. I would be mortified if my parents publicly overshared about my condition as a child or an adult. I am glad I can make the informed educated choice to tell my story my way. To read about how a child’s disability is a burden for their parents hurts so much – especially when I read about a child with the same condition as me. Was I a burden on my parents too?

These very personal stories about children with disabilities and how parents feel about them are shared for many people to read and judge. The post might go viral. What impact will that have on a child – who often cannot give consent or understand the impact of their story being shared so widely? Most often, comments are positive and supportive, but they can be brutal.

Are the children aware of the content and reach of the blog post? How would they feel of they read it? How would their teachers and friends feel? Has the child given their parent permission to write about them? Do they want medical procedures and melt-downs shared with strangers? What if the blogger's child has more fans than real life friends - will this make them conceited and entitled? I really hope they aren’t hurt by their parents’ words. The internet is forever. Even when a site is deleted.

There are parts of my condition that are so private: how my face looks first thing in the morning, the piles of skin on my floor and in the bed, and the smell of my legs when they’re severely infected. I don't let others see this side of my condition, because I guess it's like letting people see me go to the toilet. I want my privacy (and I am so thankful for my parents respecting this as I grew up). I hope to always put the best side of me online. I defended a toddler’s right to privacy online and was lambasted by the blogger’s devoted fan. It felt like a slap in the face because my lived experience was so invalid to the blogger and her fan.

An adult with a disability may choose not to disclose their condition - the whole condition or certain intricacies of it. But sometimes children's identities are made public before they've given consent. When a disabled child's parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem. A friend who is a mum and blogs about fitness told me she’s mentioned funny anecdotes about her children on her blog, but never named them. "I didn’t want my kids’ friends googling my kids’ names and finding embarrassing stuff about them on my blog", she said.

Something that's stuck with me for a long time is a post by a child psychologist. To paraphrase, James' mum asked her Facebook friends how to treat James' bed wetting - she did it with good intent, seeking advice and thinking others might feel less alone by her sharing her story. The next day, James' school friends laugh and tease him because they heard he's wet the bed. All the school mums were talking about James wetting the bed, and this filtered to their kids.

There’s been a recent influx of well-intentioned yet saccharine personal and mega-blogs devoted to disability stories told by parents. These sites ultimately provide support to parents and carers and medical professionals, rather than people with disabilities. writers are new parents - new to the experience of disability - conquering life one inspirational meme at a time. And most articles by parents outshine the articles by people with disabilities. Intent on educating at all times, parents have become our voice.

American disability activist Emily Ladau wrote a piece for Think Inclusive discussing who should speak for the disability community. She raises the issue of parents and carers speaking for their child, "Support networks are usually well intentioned…but in many cases, they take the power out of the hands of people who know themselves and their needs best: people who are actually disabled." Emily continues: "A lifetime of support is essential, but only when self-advocates are given the change to be the number one advocates for ourselves."

I wonder about the long term impact of parents sharing stories about disabilities online. Parent blogging is relatively new, but disabled children being thrust into the media spotlight is not. Quentin Kenihan, who has osteogenesis imperfecta, was made a child star age 7, when he was interviewed by Mike Willesee. His story was covered in the media for years. During that Twitter chat, Quentin told me he wishes he could have given consent for his story to be told 33 years ago. He discussed the issue of parents telling their child’s stories: "It was a well intentioned act that can go very wrong like it did for me until I took control of my choices." As an adult, Quentin has chosen the way he wants to be represented – through performances and media appearances on his terms.

I understand parenting children with disabilities is hard and isolating, and that parents need an outlet. Parents are wonderful (and sometimes the only) advocates for their children. And so many others will relate to their stories - so that is positive. (I know firsthand just how cathartic and supportive blogging about disability can be.) But is airing such personal, complex details and feelings about a child’s disability online the right thing to do?

It is a fine line between awareness raising and shaming.

This was originally published on Daily Life.

Postscript:

I read a tweet the day I sent this article to my editor: "@MelissaHawks: I hope you writers out there stop playing it safe. I hope you write the things you know you're supposed to write even if they terrify you."

I wrote about an issue I feel very strongly about - parents who overshare details about their child's disability online. Parents are great advocates but sometimes they can advocate to the detriment of their child's privacy and dignity.

I've received so much great feedback - especially from parents of disabled children. I've made them consider their child's privacy and identity. That's all I can hope for through my writing. And my editor said I was "killing it". (It's been shared over 7000 times!) Thank you.

But I've also received some dissenting views, and that's ok. I want to expand on my article here.

Here are some actual examples of oversharing I've seen on blogs and social media recently: a parent posting naked photos of her little one in a Facebook group (only last night), a parent writing that they felt robbed when their daughter was born with a disability, complaints about the way a child's disability inconveniences the parents' life, a photo of a bleeding, naked child on Facebook - because their mother was desperate for answers, stories of autism melt-downs and parents making money from their child's story through running ads and sponsored posts.

I've been blogging (and a reader of blogs) since 2001 and so have seen many questionable practices. I really do think the way some - not all - parents share stories of their children (with and without disabilities) online will impact the way they grow up. And my photo has been misused and I've seen others' (including children's) who have been misused too.

But I've also seen MANY more great examples of story telling and connection online! I don't believe sharing happy photos or stories about a child's milestones is over sharing, and I encourage and value community building for support and connections. A good measure of what to post about your child is to think about whether you'd like that written about you online, or would you like others to see you in a vulnerable way, or is this something that should be discussed in the privacy of a doctor's room?

If you are familiar with my writing, you'll know how passionate I am about sharing stories via social media. It is so empowering and reassuring for many - and makes people feel less alone. By all means, share stories, but consider the impact.

(Picture: Delicate by Coley Christine from Unsplash)

27 July 2015

Tim McCallum on The Voice Australia. Have a think about why you think someone with a disability inspirational.

When Jessie J cried upon hearing 34 year old Tim McCallum's performance of Nessun Dorma on The Voice last Tuesday night, I immediately thought of Stella Young's stance on inspiration porn. You know, disabled people applauded for doing ordinary things. Like banking or working.





Tim is a brilliant singer, who just happens to be in a wheelchair. That's his backstory. Like X-Factor winner Dami Im was born in South Korea and came to Australia when she was nine. Like Shannon Noll worked on the family farm prior to coming second to Guy Sebastian on Australian Idol. And like Karise Eden was a foster child. Those are the facts of their lives. Every successful reality TV star has a back story. That's the dramatic effect the producers employ. Contestants rising above adversity tug at the heart strings.

One thing I like about talent shows like The Voice and Masterchef is the diversity they showcase. Contestants are from different countries and religions, have various disabilities and sexual orientations, which represents the richness of our community more than fictional TV.

Tim was paralysed from the neck down after a surfing accident when he was 19. He only has use of his arms.

Tim told The Voice coaches "My level of injury is quite high and I don’t have the use of my stomach and diaphragm ... I invented different ways to hit the notes.” Singing is hard work for him. Ricky Martin called him a "miracle", which might make disability activists uncomfortable, but it IS really amazing that he's trained himself to sing using different parts of his body. That's his reasonable adjustment.

The late Stella Young did great work speaking up about inspiration porn. She wrote "[Inspiration porn is] there so that non-disabled people can put their worries into perspective. So they can go, "Oh well if that kid who doesn't have any legs can smile while he's having an awesome time, I should never, EVER feel bad about my life". It's there so that non-disabled people can look at us and think "well, it could be worse... I could be that person".

Stella continued: "My everyday life in which I do exactly the same things as everyone else should not inspire people, and yet I am constantly congratulated by strangers for simply existing.



It's a regular occurrence for people without disabilities to be wowed by every day actions of those with disabilities. And parents of children with disabilities are treated as superheroes for well, just being parents.

Have a think about why you think someone with a disability inspirational.

Is it because their situation makes you feel better about yours? Or are they actually doing something really amazing?

Tim McCallum is not just doing something ordinary. This guy isn't just buttering his toast or doing the groceries while in a wheelchair. He's singing opera live on national prime time TV. Being judged by international singers and social media audiences.

And I think we need to give him credit for his achievements. Making The Voice is a big deal for anyone. He's been a singer for years - and this program might just give him the break he needs.

Sarah Barton, founding series producer of No Limits - the community TV program that launched Tim's media career (and where he shared the desk with Stella Young) believes it is great we are seeing positive stories about disability in the media. "Anything that puts a disabled person in the spotlight alongside everybody else, achieving something is fantastic", she says. Sarah has known Tim for many years and says his aspiration has always been to sing.

Tim's not calling himself inspirational, telling The Today Show "I try to blow that myth out of the water that you can actually sing while you're sitting down."
Tim McCallum on The Voice
We do need to question why Jessie J was moved to tears, and why audiences found Tim inspirational. Was it because Tim has a disability, or because he's got amazing talent? Perhaps it's also because the show's judges, producers and audience haven't been exposed to disability? And are they reacting the same emotional way to contestants without disabilities?

The ongoing problem with the portrayal of people with disabilities is they're only ever tragic or heroic, never just living an ordinary life. I think Tim just wants to sing - and working hard at his talent - and his talent is a part of his ordinary life. I don't think Tim wants to be a superhero in a wheelchair. I think he wants (and deserves) a record deal and a season at the Opera House.

This was originally published on Mamamia. 

24 July 2015

Tips for meeting people at blog conferences.

Flower and cheese on biscuit, captioned: tips for meeting people at blogging conferences.

It’s three weeks until the ProBlogger Event (#PBEvent). I cannot wait. I’ll be in my element, learning about all things blogging and being surrounded by likeminded people, and I’m also glad for the warmth of Queensland.

Blogging conferences leave me inspired and drained. It’s exhausting learning, networking and socialising. (And drinking.)

I seem to be an extrovert, but I really do like my alone time. At times, I feel socially awkward, not knowing what to say or who to talk to. I have had to work really hard to put myself out there after so many years of feeling alone. I do get overwhelmed - especially because I am easily recognisable but don't recognise others very well – and I hope that my vagueness doesn’t make me seem unapproachable. If I don't recognise you, say hello and let me know who you are!

Kelly Exeter wrote a great post on kicking arse at a blog conference as an introvert, and Talking Frankly wrote one about the difficulties of being an extrovert (I admit to being intimidated by her when she told me she would out-tweet me last year!). The aim of my post is to provide some advice about meeting people at blogging conferences - whether you're an introvert or extrovert.

Bloggers are people too.


There are no celebrity bloggers. No blogger is better than you just because they’ve been around for longer or won an award or belong to a really cool group. They are just bloggers who are people too. Thinking like that can lead to disappointment!

Remember that blogger you place on a pedestal was also once starting out as a blogger.

Don’t think that someone doesn't want to speak to you. They might be dealing with their own anxiety or networking with a brand or catching up with a friend they've not seen in ages. As mentioned, I was on the receiving end of someone being disappointed when they met me – and that hurt.

Go up and say hello!

A blogger recently told me they sat at the same table as me for a day-long event but was too shy to talk to me. So I didn’t get to discover how awesome she is, and she told me she left regretting not saying hi.

Don't be too shy to talk to someone you admire online in person- just go up and say hi. It makes me sad when other bloggers tell me they were too scared to talk to me – because I genuinely want to meet so many wonderful people. Speaking of, I caught up with Clare recently - I love this lady and don't see her often enough!

Me with Clare Reilly at Voices blogging event

Make time to catch up.
If you really want to catch up with someone there (and not sure if you will get time or be confident walking up saying hello), send them a tweet or PM beforehand saying 'I love what you do and hope to see you at Problogger, fancy a coffee at 8 am?'. They’ll probably be really flattered and love to spend time with you. Catching up might lead to opportunities like guest posting or collaboration on exciting projects!

I have this personal motto that might seem a little up myself – but it’s something I try to follow at conferences. ‘Make myself known to those who need to know me.’ So, if there’s an editor I want to pitch myself to, or a brand representative that I’d love to work with, I’ll go chat with them, give them my business card and tell them I really like their work.

Don’t be haunted by the comparison thief.
It’s easy to feel like everyone’s doing so much more than you! Blog conferences showcase speakers who have had oodles of success – making a full time wage, getting a book deal, speaking at amazing international events, partnering with global brands, getting ten thousand hits a day, nailing SEO… You might leave feeling deflated. Or you could leave feeling inspired. I just want you to leave feeling that you and your blog are enough. If 100 people read your blog a week, that’s enough. If someone has written to you to tell you you’ve helped them, that makes blogging worthwhile.

Take some time out for you.

Blogging conferences can be overwhelming. So many people! So much information and advice to take in. And I’ve felt a real sense of evangelism being surrounded by people who just it. They just get blogging and personal branding and social media for social good. I also tend to live tweet every session I attend, which makes me concentrate really hard. By 3.00 pm, I feel burnt out.

So it’s nice to retreat to my hotel room, spend some time at the bar or pool with a friend, or even taking a few deep breaths in the toilet (even if it means being discovered by a fangirl – which is REALLY flattering, seriously!).

Don’t try to do it all at a blogging conference. Skip a session each day. Zone out on the plane before and after the event. Get some good food into you. Order room service. Hug a friend. Be yourself.

I’m booking a manicure this year. I just want to be pampered.

Flowers with caption 'You  wouldn't  know it, but  I'm a  bit of a  wallflower!'

Are you going to Problogger? Any tips? Please say hello!

Click here for more blogging tips.

20 July 2015

Lost for words

It's been about a month since I've felt like writing. I'd written something for Daily Life - it was an interesting and important topic - and that was the last thing that left my heart beating with excitement after the words made sentences, paragraphs and then a story.

I've got many ideas. There is never a shortage of issues to write about. There are so many that I worry someone might pip me at the post and write an article on that topic before I do! But I've also got a case of the can't be bothereds. I'd rather be doing nothing than writing at the moment. Life is busy. When I get home from work, writing is the last thing I feel like doing. Weekends are filled to the brim with outings and errands and naps. Writing has taken a backseat.

Outside influences have definitely contributed to my literary malaise. They shouldn't but they do. Criticism is an occupational hazard.

I've been told I'm a shit writer. (And on the same day I filed $2800 worth of invoices. Success is the best revenge.) I am criticised for starting too many sentences with I and And. Is that all those readers got from my writing?!

A blog reader sent me an email about how disappointed they were when they met me. Signed it with two kisses. Ouch.

And last week I read a piece about the pitfalls of activism by disability activist Emily Ladau. I feel this way a lot. It's one reason I haven't felt like writing a lot lately. I worry people without disabilities think activism is aggressive, or that it makes them uncomfortable. And "I should always wear an activist hat" implies we are grumpy and always on the lookout for things to be offended at (to an outsider). But I won't stop raising important issues. Because as Martin Luther King Jnr said, "Our lives begin to end the day we become silent about things that matter."

The way others feel about me shouldn't matter, but they do. Us writers are sensitive souls. And I hate blogging about not blogging, though at least this is something.

I wondered if I'd ever give up blogging? Will I just run out of puff? Maybe, but not now. I'll be lost for words until they come again, and that's ok. The passion is still in me, I know it. I've done a few exciting things (interviews, Twitter chats and workshops) recently and talking about blogging gives me a buzz like talking about my fiancé does.

For now, I'm keeping well read (and listened - I love podcasts!), trying to stay rested and microblogging over on Facebook and Instagram.

See you when my words come back. Soon I hope.

 

13 July 2015

Five ways I manage my Ichthyosis in winter.

It's been a bitterly cold winter in Melbourne (and much of the East and South of Australia) this year. Days range from three to 12 degrees Celsius. Winter weather started in May - so we've had a good two months of cold already, with two months to go! Brr! I really like the cold, but this year, I am hanging out for a break to the Gold Coast next month - longing for a little warmth.

It can be almost as hard to manage Ichthyosis in winter as in summer - perhaps because of the difficulty we have in regulating our temperature. I (and many others with Ichthyosis) prefer the cool weather though, but there's still a need to take care of ourselves in the winter. Here's how I manage.

As always, this advice is based on my own experience. Please seek the advice of your dermatologist before trying any new treatments. 

Wear warm layers of clothes.

I feel so cold - almost all the time. It takes me ages to get warm! 

I dress warmly. During winter I wear three layers of clothes on my top half (a thermal, a jumper (sweater) and a dress/nice top), stockings or leggings plus sock (and a skirt or pants if I'm not wearing a dress)s, boots and a coat. 

Two of my layers are always made from natural fibres - I love merino wool as it's soft, non itchy and washes well (I can wash in hot water and it doesn't shrink too much).

My thermals used to be polypropylene but they made my skin weep and smelly, and so merino it is! 

I also wear a scarf - again, usually made from natural fibres and gloves (though not every day because they stop me from using my phone!).



And I make sure my feet are warm and dry - I picked up some great leather boots on sale and got them in two colours which I wear every day. I was wearing synthetic boots for a long time and water seeped in, making my feet sore.

(photo by Pip)

I don't worry about overheating as much in winter. Just because I feel hot to the touch doesn't mean I am overheating - my body is usually losing the heat therefore my skin feels hot. I can always remove a layer. 


Keep my head warm.

I often wear a hat in cold weather - especially after I've combed my scalp - because I feel the cold so much through my scalp. I wear hats. I don't even care about hat hair - I leave my hat on most of the day! I don't apologise about wearing a hat at work anymore - I figure it's my reasonable adjustment!


Order a different consistency ointment.

In the summer, my ointment (cream) - which is a mix of soft white paraffin and liquid paraffin - melts in the heat. I manage this - not by putting it in the fridge but by changing the consistency to 70% soft white paraffin and 30% liquid. In the winter, it doesn't need to be as thick, and so I get 60/40 . The consistency of my cream helps it adhere to my skin.  The pharmacist makes up my creams by request.

Wearing ointment on my face makes me so cold in the wind! A hat and scarf helps!

Keep hydrated.

Just as the hot weather dries out my skin, the cold weather does too. It's mostly the wind, but in recent years, I've noticed how much heaters do too. I stayed in a hotel in Sydney last week and didn't drink as much water as I usually do. I had the heater on overnight - what a luxury! - and woke up very dry.

I try to have at least two litres of water a day, plus a cup of tea or two. And I make sure my hands and face are well moisturised - with paraffin (face) and pawpaw ointment (hands).

Boost my immune system.

My doctors have told me there is a link between a deficient immune system and Ichthyosis. Fortunately (touch wood) I am quite hardy and rarely get sick with a cold or tummy bug. But I am aware of my susceptibility to sickness, and so I get a flu shot every year and try to avoid people who are sick. I also eat good food - lots of fresh fruits and vegetables. When I get a cold I take vitamin c.


What about you - any tips for managing in the winter months?

10 July 2015

Poster children for disability charities.

Photo of stairs with a picture of Mt Everest, depicting struggle of stairs for mobility impaired.

Lilith Black*, 37, feels forgotten by disability support providers, and does not get that support she was promoting as a poster child for a large Victorian disability organisation. She tells me wistfully that she was treated like a rockstar as a child, but now sometimes has to miss out on seeing her favourite rockstars because of unreliable support workers and a lack of income.Lilith has Cerebral Palsy, uses a wheelchair and her speech is affected by her disability. She relies on support workers to shower her, cook for her and take her out. If her support worker doesn’t make their shift, Lilith struggles with accessibility. And last week she had to wait for more than six hours to go to the toilet. "It is a day-to-day exercise in begging and it feels like I need to justify every basic need. I fight hard for privacy, dignity and choices in my lifestyle. And people expect me to look normal."

As a child, she endured painful therapies that her body could not handle. Lilith believes she was "forced into an appearance of normality [but] I didn't want to look better to fit in." She was involved in advertising campaigns for the disability organisation - they took photos of her at school and while she did physiotherapy. "It was long hard days for a little kid. I thought people liked me, but I didn't fully understand why I was chosen. I suppose it was because I was deemed to be cute and bubbly. I did have a choice and I agreed because I thought I was helping kids like myself and my parents had good intentions. I didn't ever know what support came through due to the campaigns."

She was their poster child - used to tug at donors’ heartstrings - a representation of where their funds were going to. But the funds have been significantly reduced over time, and she’s not leading the independent life she was promised or promoted. Lilith believes disabled peoples’ involvement in charities can be damaging. "It severely disempowers people with disabilities, by framing them as both helpless and- hopeless individuals", she said. "They are trying to evoke sympathy and blind compassion in the donating public and I think this is wrong."The charity model of disability can be attributed to Lilith’s lack of independence as an adult, and the need for her to perform like a monkey for fundraising as a child. The charity model of disability suggests that the needy should be helped.

However, advocates believe that this model portrays people with disabilities as a tragedy, for non-disabled people to take pity on to feel better about themselves. Disability Planet, a UK-based advocacy organisation believes many disability charities are focused on fixing medical conditions, rather than enabling independence. The organisation also believes charities "reinforce negative stereotypes of disabled people, particularly through advertising and marketing".A 1992 article in New Philopsopher uncovers the business of disability charity advertising."Charity advertising sells fear, while its commercial equivalent sells desire. Charities promote a brand not to buy, but to buy your distance from."

And this ideology supports the image of despair, need, overcoming, and sometimes confronting aspects of disability that charities use in their campaigns. While Cannes praises advertising companies for inspiration porn, The Gammy Awards highlights the problem with disability charity advertising.

The Gammy Awards website states "Charity ads depict people with disability as victims of circumstance, tragic figures who are deserving of pity. Its often the most common way people without disability learn to define and explain disability. Traditionally used by charities in the competitive business of fund-raising, the application of the Tragedy/Charity Model is graphically illustrated in many Australian television and radio advertisements. Whilst such appeals raise considerable funds for services and equipment which are not provided by the state, many people with disability find the negative victim-image thoroughly offensive."

Lilith told me the disability organisation no longer needed her when she went to a mainstream school aged 10. It appears it’s not uncommon for disability organisations to no longer need disabled people to represent them when they get "better".

Merritt is in her mid 40s and lives with the severe skin condition Ichthyosis. She found some skincare products that worked for her in the mid 1990s - changing the appearance and texture of her skin. She realised just how much her skin improved at a dermatology conference she attended in 2000 when she met others with Ichthyosis. Merrit was was presented as a "success story". She said patients and parents saw "there is a possibility of improvement with time and perseverance."

Merritt told me that managing her condition with topical retinoids has meant she no longer feels valued by a charity supporting Ichthyosis patients and families. Merritt’s skin has significantly improved since childhood, and now the charity that helped her as a young woman no longer wants her to share her success story with others, despite her advice helping younger patients. "It’s not like I’m the poster child for Ichthyosis anymore. No one will fund research to find a cure if your skin appears normal", Merritt laments. She is very disappointed, especially given the support she received from them, and the donations her family made.

The Gammy Awards team doesn’t believe all charities are detrimental - they are fundamental to supporting our most vulnerable. But they believe charities need to move from the charity model of disability, to empower disabled people. "We do need to educate charity managers and professionals to review the way they operate and ensure that funds are channeled to promote the empowerment of people with disability and their full integration into our society as equal citizens – requiring our respect and not our pity", the Gammy Awards’ website states.

The Australian Council for International Development’s (ACFID) code of conduct is helping the charity sector move in this direction, expecting its signatories to respectfully portray people in their campaign material. ACFID’s code states "Signatory organisations will ensure that the use of images and messages portraying women and men, boys and girls in their communications respects the dignity, values, history, religion and culture of the people portrayed." Signatories of the ACFID code are obliged to depict "images and messages of women and men, boys and girls...in a dignified, respectful manner, portraying them as equal partners in the development process."

Charity campaigns that are consented to and allow collaboration with people with disability are empowering. Todd Winther, a Youngcare resident, takes control of how he is portrayed in the charity’s campaigns. 31 year old Todd has Cerebral Palsy and has lived in Brisbane’s Youngcare facility for two and a half years. He’s doing a pHD in politics, works part time as a political journalist, and enjoys seeing live music - which he can do more of now he lives in Brisbane. Todd told me: "Youngcare has provided me with supported accommodation that allows me to live independently and autonomously: a very rare occurrence for someone with a severe physical impairment like mine."

Photo of Todd Winther at Youngcare

He is directly involved in Youngcare’s fundraising campaigns. The not for profit organisation receives no recurring government funding. Todd co-wrote and starred in the national TV campaign which launched Australia-wide on the Nine network in October 2014.

Samantha Kannerley, Youngcare CEO, is committed to preserving the dignity of people appearing in Youngcare’s advertising. They are mostly grant recipients and sometimes Youngcare residents who provide full, informed consent to appear. "Youngcare will only print or produce what a person is happy to share in the context in which they have consented to. What is shared is usually a success story of how a grant has helped that person to remain at home or to leave aged care", Samantha said.
Todd believes Youngcare as an entity is aware of and avoids disability stereotypes. "I am consulted and contribute to everything I’m involved in, and my opinions are not only highly valued, but considered to be integral as to how the organisation operates",Todd said.

Todd feels empowered because of Youngcare, and is committed to ensuring the organisation receives funding. "With the help of Youngcare I’ve gone from a person with no power, to a person with absolute power in how I live my life. My speaking engagements with corporate donors, and my participation in marketing campaigns to encourage members of the public to donate is vital so that Youngcare can continue to do their fantastic work."

He hopes to change the perception of disabilities through his involvement in Youngcare campaigning. And this positive portrayal also helps donors see the difference they’re making to residents. "The fact that I am studying, and working indicates that I am living a ‘typical’ life of a person my age. It is unlikely I would have been presented with these opportunities if I did not live in accommodation provided by Youngcare, so my studies and my job as an academic researcher provide a ‘real world example’ of the impact the organisation has on my life", Todd said.

An edited version of this has been published on Daily Life.

*Lilith Black is a pseudonym. Name has been changed on request.


Photo by Arturo de Albornoz, American Disability Association (tm) - Estados Unidos - 2007. Used under a creative commons licence.

06 July 2015

Six awesome podcasts hosted by women


I am totally addicted to podcasts. Maybe it's my need to be switched on and want to soak up views of so many others all the time? It's a really effective use of my time - a way to learn without reading. And since my last podcast post, I've found six more podcasts that I love and recommend - these are all hosted by women.

Stripped  

Stripped- hosted by Sarah Meehan-Sirk - is a summer series on CBC Radio in Canada. I’ve come to know about the show because Sarah asked me to be on it! The series explores the link between our bodies and the world. The show I featured in is about skin, and I spoke about skin hunger and Ichthyosis. Hear my episode here.


The Mystery Show is another Gimlet production (from the same people who make Reply All). It's hosted by Starlee, who I find so charming. As the title suggests, it's a show solving mysteries. But it's so much more than that - Starlee goes on the most wonderful tangents. I was hooked after hearing The Mystery Show preview on Reply All. It was about Britney Spears. So good.

Chat 10 Looks 3

This is hosted by two of the smartest and funniest women in Australian media, Leigh Sales and Annabelle Crabb. It's very basic - sometimes they're recorded in their car, others in the ABC's piano room. And it's very funny. I most love Leigh Sales' showtunes. The pair have fantastic charisma and listening to their conversations is a treat! They are so lovely! And funny. And I wish I could have a good ol’ chat with them too.

Save the Date Wedding Podcast

Save the Date Wedding Podcast is hosted by comedian Aleisha McCormick. This is such a fun wedding planning show that's given me lots of ideas. It's also really inclusive, promoting marriage equality. Pip Lincolne introduced me to this at the start of the year, and it’s become a valuable part of my wedding planning.

Assumptions 

Assumptions on Radio National features Susan Carland (Waleed Aly's wife) breaking down assumptions about many things - living alone, female pilots and male midwives, to name a few. It's informative, funny and I want more.

The Nitty Gritty Committee with Meshel Laurie. 

I love Meshel's blog because it's much deeper than what we hear from her on commercial radio. So when I saw she has a podcast out, I was very excited. I've listened to a few episodes - Sam Johnson (actor) and Kerry Tucker (former prisoner) have been my favourite. I wish they were longer episodes. Great stuff. 

(For information about how to listen to podcasts and how to make them, visit my previous podcast post.)

Have you got any more podcast recommendations?

29 June 2015

My unborn child has inspired me to think about disability and genetics and the value of a life.

I wrote this for the Amazing Babes event at the Emerging Writers Festival. Gosh I was nervous about reading it out. I cried when I read it to Adam (and so did he). And I choked up on stage. And I was scared about publishing it. Because these issues aren't discussed enough. And people fling judgment around - even people in my own community. I don't think they realise how their judgement creates fear about discussing issues like this one.

But I got brave after getting such a good response from the Amazing Babe audience and I pitched it to Daily Life. It was edited and published. And the response was wonderful. People told me how much they related, they told me their stories of deciding to have a family, and said that Adam and I will make loving parents if we decide to have children. People said they cried. Even my editor. And I cried. Here is the unedited version - longer and funnier than you may have previously read. Thank you.




This is a letter to my unborn daughter - an amazing babe. The hardest letter I’ve ever written and read.

Before my fiancĂ© Adam thinks I’m telling you before he hears the news (he can’t be here tonight), before you tut tut at me for drinking wine, and before you tweet to the world that Carly Findlay is having a baby, I’ll set things straight. I’m not pregnant. Nope. Not yet. That’s just a food baby under my dress.

I’m not even certain that I want my life changed so drastically by a baby. But I’m getting clucky. I’m 33, due to wed next year. My friends are having babies. I gush over animal hoodies and denim pinafores - I’ve been browsing the baby section of H&M. I want to squeeze chubby cheeks and blow raspberries on tummies and tickle wriggly toes.

Last month I hosted an event for adults and children affected by the same condition as me. Adam was king of the kids - entertaining them, making them laugh and making play dough hearts for me. As I was chatting to a panel of doctors, the view of Adam distracted me. The photographer was taking a photo of a 10 month old baby, and Adam was behind the photographer making the baby laugh. Oh my ovaries. He will make a wonderful father.

Amazing babe, I'm wondering so many things. I wonder what you’ll look like?

How will I handle changing nappies and wiping your nose when I can’t look in the toilet after someone else has left their poo unflushed?

What will your hair be like when mine is African and Adam’s is Asian?

Will I hold back from sharing your photo on social media? Will having a baby make me a mummy blogger? (I wonder if brands will be more willing to work with me then?!)

Will I be a stay at home mum and a writer, or will Adam be a stay at home dad?

I wonder if you'll be an only child like me or have a sibling like Adam.

Will it hurt when you come out?

How will we even afford it?

Will I have to go to weekend sport when I hate sport, and can your dad take you to swimming lessons because I can't swim?

How can I give up soft cheese for 9 months?!

All these thoughts and you’re just a twinkle in my eye.

When I grew up, the kids at school told me I’d never have sex. They assumed that my appearance and skin was a deterrent to all boys. And for a long time, and after dating a few idiots, I assumed I’d be single forever. But then I met the beautiful Adam. And now we’re getting married. I can’t believe it! This wedding, as well as being the best party I never thought I’d throw, is the middle finger to those high school bitches.

And with marriage comes the possibility of having children - something else I never thought would be on my horizon. Amazing babe, you might be in my life one day.

You’ve inspired me and you’re not even born yet. You’ve inspired me to think about disability and genetics and the value of a life.

After doctors congratulate me, they talk family planning. I am confident that with my medical team, Adam and I will have all the support we need to make informed decisions.

For me, it’s not just simply going on or going off contraception. It’s about genetics. A gamble. An informed choice. And it’s made me think about being pro choice. I am pro choice - a woman’s body is her own and if she is not in the right space to bring a child into the world - for whatever reason, I respect her choice. I believe any life, even a life with a disability - including my genetic skin condition - deserves to live and be loved.

And then there’s this. I know the heaving pain that this condition brings. I know the social challenges, the isolation and the discrimination. It gets better but it never ends. Could I put my little one through that?

There’s also my health to consider. A woman with Ichthyosis having a baby is possible - I have friends who’ve recently become mums. But what if I get too sick to be a good mum? How could I care for a tiny baby and myself when my skin is sore? What if you have the same condition as me?

So many thoughts. And you’re just an amazing babe in my mind. This isn’t even something I feel I can discuss in my own illness community because views about pre-selection, abortion and religion are so staunch, and genetic testing isn’t often considered until after the baby is born.

Amazing babe. If you are born with Ichthyosis, know that you will be as loved as if you were born without. I know this condition so well. It will get better, but it will be hard. And you’ll have a supportive community around you. And my mum, the most amazing babe, has taught me so much. She’s going to make such a wonderful grandmother. You'll be spoilt!

And there are so many new developments in the treatment and management of Ichthyosis that weren't around when I was little. Play therapy, assistance in school, cooling vests and creams. Society is so much more diverse now, and there are anti bullying programs in schools. Progress.

And maybe you’ll be our adopted child - Adam and I can give you the life that your birth parents couldn’t. You’ll be loved no less than if you had my smile and Adam’s nose.

You might get some comments about your mum looking different to your friends’ mums. I hope that you teach them about diversity and inclusion through leading by example, and you don’t get too tired explaining my appearance.

My parents had no knowledge of Ichthyosis when I was born. They came to Australia as political refugees - to escape apartheid. They moved to a regional city two months before I was born. And they knew nobody. I wasn’t expected to survive. But I did. And they did an amazing job. Fast forward 33 years and look how much we know about Ichthyosis.

Amazing babe, before I’d even typed these thoughts into my computer, before Adam had the chance to smile at me during a folate commercial on TV (he does it all the time now!), before we’d even been engaged for four months, I was faced with The Talk. The one where I’d have to tell someone my thoughts about having children. The one where I had to tell someone my views on Ichthyosis, genetics and pre-selection and abortion and …

I hadn’t even processed the idea of having children myself.

What should have been an exciting conversation - preferably with Adam or my own mother or my geneticist - was one that left me in tears and shaking. Words were spat at me. Words about me being a burden and being an irresponsible mother because I have a rare, severe, genetic illness. And some arbitrary facts were thrown around about the likelihood of me passing on this condition to my unplanned, unborn child. It wasn’t said but I could hear what they were thinking in their tone: “I’d knowingly cause physical and social pain to a baby by passing on this condition"

A quick google search does not provide accurate details of the chance of me passing on my condition. With Adam’s ‘normal’ skin, and me having the condition, it’s less of a chance than my own parents had. A discussion with my geneticist confirmed low odds - and she also said I should not be denied the right to be a mother.

It did not matter to this person that I’ve got a wonderful team of specialists or that I know more about the condition than they will ever know. It did not matter that my parents had no family support when I was born, but they did their very best. It didn’t even matter that my partner is 100 percent committed to me - and that not even he and I had discussed having children at the time. It didn’t matter how much this conversation hurt me and that I will never be able to feel comfortable around them again. Disability was seen as a tragedy - my disability and your potential disability - and I could not reason otherwise.

My friend Jax Brown, who has a disability, was confronted with a conversation about eugenics - the majority agreed they would terminate a foetus considered to be abnormal. Jax wrote: "Conversations like this devalue the contributions to society of anyone with a disability. This, situations like this, is the weight of marginality. This is minority stress. This is one of the fundamental things that make our lives hard, the unexpected times when you have to fight for your right to be as you are, when you have to tackle the assumptions all of a sudden and with no warning, and you have to do it well because if you don't the injustice will just continue on.”

When you have a disability, your appearance, body and ability is up for discussion by everyone. From stares and comments, questions and assumptions, judgment and sometimes discrimination. I never thought I’d be discussing my reproductive choices with anyone other than my partner and my medical team. People assume that through disability, we will make ‘irresponsible’ choices, and people will vocalise their judgment.

I know what people think of children with disabilities being born. I see it in the media - headlines scream: "Disfigured Dad Decides To Keep Baby With Same Disfiguring Condition, Despite Cruel Comments And Push By Others To Abort- and commenters unfairly weigh in on a right to life. Friends always say they don’t mind the sex of the baby, as long as it’s healthy. Doctors force sterilisations and abortions on people with physical and intellectual disabilities. When I was in year seven, a fellow student told me that if I was born to her mother, she’d have given me up. I’ve been shamed because I’m an only child, and told that it would have been fairer on me if my parents had given me a sibling - preferably one with Ichthyosis. A person with my skin condition told me it was child abuse for people with the condition to have children. And as mentioned, last year I was forced to discuss my preference to have children.

It was then that I experienced a small part of what my parents might have felt during the apartheid. That my colour - my condition - will make me an unfit mother.

This is why I blog. To raise expectations. I have to do that every day of my life.

But disability is not the worst thing that could happen.

Stella Young wrote: “Disability is often framed, in medical terms, as the ultimate disaster and certainly as a deficit.”

Disability is not the worst thing that could happen because you will be loved, supported and planned for. You will be warm and your tummy will be full and you’ll have lots of books to read. You will have a wonderful life - I’m proof that you can. Amazing babe, you will be so planned. I’ll even draw up a spreadsheet for you - and I don’t make spreadsheets willingly.

Disability will not be the worst thing to happen to you as my child, or for me as your mother. The worst thing that could happen is other peoples’ closed-mindedness.

Amazing babe, I don’t even know if you’ll exist. But it doesn’t mean I haven’t been thinking of you.

25 June 2015

Fangirl.


Hollywood hall of fame - "stop worshipping idols, humanise them, and realise you've got a place next to them." - Tavi Gevinson

It was almost two years ago that I saw Tavi Gevison speak at the Melbourne Writers Festival. She was 17 at the time, and had equal amounts of wisdom and immaturity. I wrote about it here. Her words about fandom have stuck with me all this time. Being an avid reader and fan, she shared many quotes with us. I kept playing this quote she mentioned over in my head, frantically searching for it online and eventually buying the book to read it again. (Can I just remind you how risky it is to google and book called 'I love dick'?!)

"You're shrunk and bottled in a glass jar, you're a portable saint. Knowing you's like knowing Jesus. There are billions of us and only one of you so I don't expect much from you personally. There are no answers to my life. But I'm touched by you and fulfilled just by believing." 
~ Chris Kraus - I love dick

Fandom is believing in something. It's relating to lyrics and lives. It's finding the joy in the little things. It is being able to take something of someone you admire with you through your headphones or in a lyrics booklet or in your pocket through a social media app. It's precious - knowing that you're part of a tiny, or big community that all feel the same way about a band or an actor or a book.

Tavi seeks solace in fangirlism - something I can relate to so much. She calls herself a "professional fangirl", and said "being a fangirl is one of the most happying things anyone can do." Fangirlism is both an expression of individuality and something that brings people together. Tavi said "you might look uncool for expressing enthusiasm" - I identified with that a lot - my friends always tease me for loving Darren Hayes, citing that's uncool. But I feel the coolest. Because I've got this fandom to hold on to.

Tavi said that it's ok not to like high-brow everything - she juxtapositions her fandom of One Direction alongside Fleetwood Mac. She also spoke about how fans of one idol can tend to look down on fans of other idols - "let others like stuff", she said. I’ve been a fan of a few celebrities - and most people tell me how daggy I am for loving them. But I don’t care. Just like I don’t mind not conforming, I don’t mind that my idols aren’t mainstream either.

She said "stop worshipping idols, humanise them, and realise you've got a place next to them." And as I've moved into my 30s, and with social media providing instant connection with my idols, this is so true. I've got a few idols - it's no secret. I see what they're into, their beliefs and values, and realise that maybe we've got more in common than I used to believe.

My good friend Lauren Moss told me that in her leadership training courses that she delivers to youth, she asks her students to list all the qualities they see in their idols and then list all the qualities they recognise in themselves. Her students are able to see that their idols are human, on the same level, and they share similar traits.

The interaction fans and their idols have on social media is unprecedented. It's a personal connection, and a window into each other's lives. I'm sure it could be detrimental to an idol - invasion of privacy and high expectations from fans to respond; and likewise for fans - especially if their expectations are not met. But on the whole, it's positive. Idols and fans get to know each other like fans only dreamed of.

And now, Darren Hayes has read my blog. I've been a fan of his since 1996.

He read it and tweeted me, referencing something I wrote in it. He's done this a couple of times now and every time it's happened, I've jumped up and ran around the house, squealing.

While that may not mean a lot to many of you, and may seem like I'm chasing celebrity, it means so much to me. For 18 years and counting, I've carried his words in my ears and in my heart.

I screenshot all of his twitter correspondence with me. While I can't say we are friends, we now communicate more deeply than me just squealing at him. We've talked about coming out as gay and disabled, and about star wars costumes and my Reddit experience. The stuff we talk about on Twitter is far from the "OMG I love you" conversations I had with him as a younger fan. And I've spoken to him on his podcast. He was genuinely interested in my story.

When I wrote about meeting Darren outside the Enmore in Sydney in 2011, I mentioned I told him I loved him and he said "I love you too Carly". I received one of the most critical comments ever. It sticks with me now. Someone told me they were concerned for my emotional well being because of my love for Darren.  And yet it was completely the opposite. Darren's words validated that he knew who I was.

Tavi's talk reminded me that there are people who understand fandom and there are people who do not. It reminded me there's a sense of unity in fandom - unity in love, knowledge, fashion mimicry (floral headbands galore at Tavi, hand printed tshirts at a Lorde concert ) and excitement. Fandom gives the isolated a place to belong.

And maybe this is what kept me going as an isolated teen. Knowing that there are others out there like me, relating to lyric after lyric, and having a special interest that I could devote my time to. One of my best and only friendships in high school was strengthened because of Savage Garden. There were nights spent dubbing videos of their performances, sharing our first concert experiences and feeling excited about this higher being that we'd chosen to follow. And when my friend said she had drifted away from the band and Darren Hayes, our friendship drifted apart too.

Tavi said that it's ok not to like high-brow everything - she juxtapositions her fandom of One Direction alongside Fleetwood Mac. She also spoke about how fans of one idol can tend to look down on fans of other idols - "let others like stuff", she said.

I fond this photo from when I was 15 years old, in the queue for my first Savage Garden concert. 5 May 1997. St Kilda. That excitement on my face is the same as I feel now when I think about my fandom.

18 years on and Savage Garden’s greatest hits album was released. I squealed like it was 1997.

I am so proud to have followed this band since I saw them on TV in 1996. This fandom has changed my life. And I’ve also realised that my idols are people who walk alongside me - creatives, managers and friends.

Who do you fangirl over? Has your admiration for idols changed over the years? Have you connected with your idols?



22 June 2015

What an editor's rejection letter taught me.



I got a heart-sinking rejection email from an editor this month. I had written a few posts for an entertainment website and was quite proud of my work - showcasing a different angle there. But my writing style had not performed well - traffic wise - and they don’t have the budget to keep me as a regular writer. I actually haven’t had a rejection from a pitch for a long time - and I’ve been feeling very fragile, so this was a hard email to read.

And then I got over myself. I thought about some truths. That rejection wasn’t so bad. This is what a rejection letter taught me:

I hadn’t felt confident writing articles for that publication anyway. Well, my writing was good, and my ideas were original, but I couldn’t conform to their Buzzfeed-like style. Pop culture isn’t really my thing anymore. I prefer to delve into bigger issues, write more words and make an impact by getting people thinking about diversity.

I dabbled, but didn’t make a splash there. And that’s ok. I don’t have to be good at every style of writing.

I spent a long time researching and writing for not very much return. I can put my time to other things like creating a super blogging course.

It might have been another byline, but it’s ok that I’m not a regular at that website. That opportunity can go to other writers. There’s enough Internet for everybody.

While I am time-poor, I should play on my strengths, research and write what I enjoy, and focus on my area of expertise. And it’s ok if my writing style doesn’t match the style of that website. I don’t have to push myself if I can’t.

I write for fun and a bit of extra pocket money. When it stops being fun, I can stop. I am lucky to have that privilege.

I’m having success at pitching myself to brands as well as pitching articles to editors. I hadn’t had the confidence to do this until recently - and I’ve had so much success partnering with brands for the Australian Ichthyosis Meet.

Just because my writing style doesn’t suit a website, it doesn’t mean I’m not a good writer.

Most of my pitches elsewhere are accepted and get a great response from readers. I’ve won some awards. And I've helped people see a different perspective. For that I can be proud.

What has a knock-back taught you?

19 June 2015

Bloggers with disabilities on No Limits.

Australian disability bloggers on the set of No Limits - Carly Findlay, Leisa Prowd, Hayley Cafarella and Michelle Roger

You might remember that late last year I was invited back to produce and anchor an episode of No Limits on Channel 31. My dear friend Kath (director of the show) was interested in how blogging allows people with disabilities to have a voice, and she wanted me to discuss that.

I asked some other dear friends - who I've met through blogging of course - to chat with me. Hayley, Michelle and Leisa came to the studio and were complete SUPERSTARS! We could have chatted about this all day!

What's so awesome about blogging is that we are making our own media, controlling the way our stories are being told, and making meaningful connections and positive change.

You can watch our program here now! I received the DVD copy of the program and have finally had access to super fast internet to upload it.







I really enjoyed the discussion about how it can be a big responsibility to blog about illness and disability, and the expectation that readers can place on you.

How wonderful it is to be a part of a niche blogging community, and also the wider Australian blogging community. These conversations need to happen more!
Australian disability bloggers on the set of No Limits - Carly Findlay, Leisa Prowd, Hayley Cafarella and Michelle Roger
Also, if you are an Australian blogger with a disability or chronic illness and would like to join a wonderfully supportive Facebook group, you can do so here. And if you want to contribute to my blog via a guest post, I wrote how you can do so here.

(The original post about the filming and screening was here.)

18 June 2015

Make a stranger feel like they're your friend.



I took a trip on the train to the country this week. The train was not fully booked, and so I sat on the seat opposite to the one I’d been assigned. The lady I was supposed to be sitting next to told me a lot about herself before the train departed. She told me that she is afraid of heights and that I would need to help her when the train went over a bridge.

I wasn’t expecting the level of anxiety she faced. I wasn’t sure how I’d help her. I have only had one recognisable panic attack. I had just had a conversation with a friend saying that I was unsure about helping someone with mental illness, and I hoped I was doing enough by asking ‘Are you ok”.

As the train went over a bridge she put her pillow over her face and started to cry and take short breaths. It was very sad to see. She’d ask me if she was over the bridge yet. She would look out of the window because her psychologist had told her to do that.

I tried to reassure that we were safe and tried to talk to her about good things like her upcoming holiday. I suggested she drink water. I did the things a nurse did to me when I have a blood test, when I cryperventilate over the needles.

Each time the train tracks reached ground level, she apologised, thinking she’d been silly. She thanked me profusely, and said "All my prayers were answered. I got worried that I'd sit next to someone on the train who would think I'm a freak but you've helped me so much. I am so glad I sat next to you.”

As the trip went on, she told me about a violent, traumatic situation she’d experienced last year. She was about my Mum’s age, maybe a bit younger, and I felt so sad when she told me of her experience. I gave her a number for a government helpline and encouraged her to call it when she is able. She told me she would call, with her husband’s support.

When I got on the train, I was looking forward to reading and resting. Selfishly, I wanted to be alone for a while. I didn’t think I’d have an interaction like this. And I didn’t feel prepared to help someone through a very difficult time. But even though I have not experienced the level of anxiety she did, I still had the tools to help her.

Sometimes we’re worried we don’t know what to do to help others. There aren’t enough guidebooks or tool boxes. But we can all offer love and kindness - even to those who we’ve only just met. If we treat people how we’d like to be treated, or in a way that has felt loving and comforting for us in the past, it can make the world of difference to someone else.

We don’t know the struggles of the stranger opposite us on the train. But it’s so important that we make that stranger feel like they’re our friend. We can look up from our smartphone or newspaper, say hello to our fellow passengers and help them through a bad time if they need us to. Sometimes that's enough.

If you need to talk to someone, you can call LifeLine on 13 11 14, Kids' Helpline on 1800 55 1800, or Beyond Blue on 1300 22 4636. And Colour Me Anna has written a post about helping someone with anxiety.

17 June 2015

Finding my Hair Romance (Still not Rapunzel, and that's ok.)

This post was originally written for my friend - blogging and hair superstar - Christina who is The Hair at Hair Romance. I was so excited to be featured on her blog :) It was titled STILL NOT RAPUNZEL AND THAT’S OK




My hospital file is thick. That’s what happens when you live with a rare severe illness requiring many inpatient stays and outpatient appointments throughout life. The file is more than a medical report though. While it’s filled with doctors’ notes and medical photography, it’s like a scrapbook – with pages of articles I’ve written, and locks of my hair. My hospital file has come with me from the children’s hospital to the adult hospital. A few years ago, the head dermatologist – who I’ve seen since I was six years old – flicked through the pages from my childhood. He told me that when I was a little girl, I wanted to become a doctor and have long hair like Rapunzel. My childhood dreams have not come true. I’m living a great life, but I’m not a doctor, nor can I hang my tresses over my balcony for my prince to climb.

The rare, severe illness – a skin condition called Ichthyosis – has meant my hair has never been long. And it will never rival my hospital file for thickness. The type of Ichthyosis I have (Netherton’s Syndrome) causes brittle hair, prone to breaking off at the root. My scalp is scaly.

My hair as a newborn was thick and straight – much different to my Mum’s African ‘fro. And then it fell out. At preschool and primary school, Mum would scrape together my hair into ringlet pigtails. I never wanted a haircut because my hair took so long to grow – what a waste of hair, I thought!

Mum spent half an hour each night combing my scalp – she did this until I was in my late teens. This was such precious time spent together – I would tell her about my day and we would get creative through making up stories. I am so lucky that this condition has allowed me to bond with my parents, and for the opportunity to read and write instead of playing sport or while laid up in hospital. Sometimes, when I go home to my parents, I cuddle up on the couch and ask Mum to do my scalp like old times – it feels like love.

At high school I discovered hair clips which broke my hair more, and mousse for curly hair – which gave me round, yet crunchy curls. All the girls were dying their hair with supermarket rinses – reds and burgundies. I tried henna, but it was very messy, and the white scales on my scalp ended up redder than my very dark brown hair would take.

When I was around 15, the hair just above the nape of my neck fell out. Like an undercut. Except I never wanted an undercut – they were so 1994. My scalp became itchy and bloody, and the more I scratched the less my hair grew. It became patchy at the front too – and I would clip the wispy strands over the bald spots to hide them. Dermatologists did not know the cause, nor what to do – it could have been a fungal infection, but was probably just my unpredictable skin condition playing up. It went on for two and a half years – the less I scratched it the better it became.

In the past 10 years, my hair is the best it’s ever been. While it’s not long, it’s thicker and healthier. It’s curly so it looks full. Sometimes I get bald patches when the comb nicks my scalp, but these grow back much quicker than when I was younger. I stopped using supermarket and salon shampoo, instead switching to sulphate-free shampoo (I love Alchemy and MooGoo) and I condition more than I wash my hair. I comb the scale from my scalp every second or third day, which gives it a rest from the gentle trauma of skin agitation. And I wear hats – not only to protect me from the sun, but to keep me warm. We lose so much heat from our heads. I occasionally use very gentle, moisture-rich styling products like the Body Shop’s brazil nut cream, plain coconut oil and Miss Jessica’s products for African hair that I found in New York (I love Curly Pudding).

I used to see long hair as a sign of femininity – and because my hair has always been short, it was hard to feel feminine because of this portrayal. It’s rare to see actors and models with short hair. It didn’t help that sometimes, when people stared at or commented about my skin, they’d ask why that boy had a red face. They couldn’t see past my red skin AND they thought I was a boy. Now, as I look for wedding inspiration on Pinterest, short hairstyles are lacking. But I’ve poured over pictures of Kerri Russell in her short haired phase, and pinned some beautiful photos of women wearing floral and pearl hairpieces over their short curls.

The way the media and advertising portrays people with scaly scalps can be damaging – have you seen dandruff shampoo commercials?! People with flakes in their hair and on their shoulders are depicted as dirty, unsuccessful and to be avoided. This isn’t the case. Conditions like mine can’t be treated with anti-dandruff shampoo. People with dandruff and other scaly scalp conditions shouldn’t be socially penalised for our appearance and the media and society’s perceptions of a scaly scalp.

Now I’m close to my mid -30s, I am at peace with my hair and my scalp. I love my curls, I love it short (because it makes me feel tall) and I can’t wait to wear a sparkly accessory in my hair on my wedding day. That dream of being Rapunzel is long gone – I’ve learnt to manage my hair and scalp the best I can, and realised that others’ perceptions of short hair and a scaly scalp do not detract from the person I am.

(Christina is on the left, and the other curly haired beauty is Carly Jacobs who blogs at Smaggle. Christina also blogs with her husband at Mr and Mrs Romance. You can check out Chrissy and Carly's fantastic blog course at Little Blog Big.)

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