How to cushion the blows when writing online.

Writing online is like putting a message in a bottle and sending it to sea. Precious and fragile, our words go on an undetermined journey. We never know who will find them. And we never know whether someone will handle it with the same care that we did writing it.

Every so often (fortunately once in a blue moon - and it was a blue moon on the weekend!) a hater (or vocal dissenter) comes along and I doubt everything that I'm good at. I feel fraudulent. I worry that having an opinion makes me a bad person (it doesn’t).

Criticism can be hard for writers – perhaps more so for those of us who share personal stories. Our identity is linked to our occupation, so it can be hard not to want to curl up in a ball when we receive a negative comment.

I wrote a piece last week – first for Daily Life and then for my blog. I’m so proud of doing so, because it’s a topic I feel strongly about. But it was polarising. I received an overwhelming amount of positive feedback – even from a group I didn’t expect – parents of children with disabilities. Countless people emailed me thanking me for writing it, and asking for advice and telling me their experiences of having their stories shared by others. And many disagreed with my piece too, which I expected.

But even respectfully expressed differing opinions need some cushioning. And hurtful comments (direct or indirect) need a glass of wine and camembert. Writing online is tough.

These are the things I’ve learnt about cushioning the blows when creating and writing online.

There will always be someone who disagrees with you.

Not everyone will like what you write. Have you enjoyed every article or blog post you’ve ever read? I haven’t, and I bet you haven’t.

And playing it safe doesn’t keep you safe from disagreement. Even if you write about chocolate and fluffy Labrador puppies, there will be some people who don’t like chocolate and puppies. Luckily the internet is big enough for everyone’s opinions. And everyone’s opinions are valid.

Unless you're spurting hate, your opinions don't make you a bad person.

I’m no Katie Hopkins, but every so often I want to be brave and address an issue I (and others) feel strongly about. Being an activist sometimes involves starting (and enduring) difficult discussions. It doesn’t mean I hate people or judge everyone. I’m not angry or looking for issues ALL the time! I’m often writing because I believe in a cause for inclusion or change.

(I really like what Leela Cosgrove said about women having opinions.)

Your blog is only one facet of you.

People often aren’t reacting to you as a person, but to your words. That doesn’t make it easier to take, I know, because your words are you, but as Taylor Swift sings, try to ‘shake it off’. I remind myself that most people who leave awful comments only know me from the 500 or so words I’ve written online. They sometimes come to my blog not knowing why I write about disability and appearance diversity issues. They say their piece and leave, maybe never returning to read future posts.

You can’t be responsible for how someone interprets your words.

You carefully wrote your post, including your opinion and sought others’ for balance. You spell checked it. You used kind, considered words. But then a reader spots a typo, takes offence at a single sentence (I'm guilty of that!) or feels like you aimed the post at them. They might get really upset because of their own experiences (that you might not be aware about). And they let you know – directly or otherwise. Their interpretation will always be different to your intention.

Through writing online, you get to know yourself and form connections in like-minded communities. This can be great for personal development and networks, but can also narrow your view, perhaps making you assert yourself a bit too often. (And that's why I think it's important to read widely and include lots of other opinions in your writing.)

And sometimes people in your life outside of your writing/activism communities won’t understand where you’re coming from. Sometimes you’ll upset them. Apologise if necessary, and help them understand why you write and how you want to make a difference. I have used a simple quote to explain:

It’s not weak to apologise.

There have been a couple of times recently where, while I didn’t write something offensive, I didn’t check people’s quotes properly. And I apologised to the interviewees and had my editor remove the quotes (and I didn’t include them on my blog when I republished the pieces). I’ve written to friends to clarify misunderstandings and discuss issues further in private. And I’ve said sorry.

Also, you’re not always going to be right.

You don’t have to welcome every argument.

I welcome and value differing opinions – I really do. I love learning about different perspectives and ways of doing things, and genuinely engage in conversations.

But those people who object to a differing opinion by sniggering through passive-aggressive social media posts, or only ever engage with me to tell me they disagree, or are rude or launch personal attacks – they don’t matter to me. The people who always back me (and this doesn’t necessarily mean agree with me) matter to me.

The noise in your head gets loud.

I received thousands of likes and comments on an A Mighty Girl post over the weekend, yet I couldn't get four or five dissenters out of my head. I was feeling like I’d let down a whole community (I hadn’t). I've had some pretty awful thought about myself these couple of days.

I try to circumvent this by saving all the wonderful words from readers and reflecting on those. I have chatted to lots of lovely people. And I switch off for a while and fill my life full of good things.

Believe in yourself.

Don’t let a few negative comments stop you writing. The people who will connect with you, and who you will help through blogging will far outweigh the nasties. Keep going, keep writing for you. Stand for what you believe in and believe in yourself. Make people think. Shake things up. Touch on the hard topics. Write bravely.

I stand by my words and I hope you stand by yours too. As my friend Brad said, “How would you feel about yourself if you chose not to write about something you felt was important?”

I asked my online writer friends for their perspectives, here’s what the smart ladies had to say:

Annette talked about self care:

"I think you have to hold on to who you are away from blogging. If you're feeling weighed down by negativity or criticism, turn away from those voices, and do something that makes you feel happy. That can be sketching, baking, going for a walk, sorting out your wardrobe, chatting with a friend... do things that make you smile. Feed the positive, starve the negative."

Carly-Jay wrote about the importance of telling her truth: 

"The most imperative thing for me is that I write my truth - MY truth. People are always going disagree - it's the human condition - but it's a show of their character when comes to how they deal with that difference of opinion. If they bully, I figure that's their journey and I feel for them. If they troll *and* bully and choose to be passive aggressive, then I find myself thinking that they've been torn from some really bitter cloth and they most likely need professional help with their anger issues. I admire and respect how you write authentically with your morals and values in tact because so many people write blindly (ie. what their readers want to read) instead of challenging the status quo. And to end, a favourite quote from my love George Bernard Shaw - 'Those who cannot change their minds cannot change anything'."

Celeste wrote about her motivation to keep going: 

"Sometimes I feel like a piece of shit and the only recourse I have is mocking the hell out of those who make me feel so. It's the "greater good" that keeps me going. I mean if I drop off the radar, how many other radical left Aboriginal feminist writers will be on the scene?"

Clem, who has written a few public apologies,talked about the importance of apology when necessary: 

"There are two possible answers to this, depending on the circumstances. The first is that if you stand by what you've written, you find faith in your convictions. Not everyone will be happy with your preoccupations or your activism 100% of the time, and that's fine. Having faith in yourself and strength in your voice is important, and you develop it precisely by being exposed to people's discomfort or displeasure.

But the second possibility is also valid and important, and that is having the strength to accept when you may have been wrong. Unhappiness or opposition isn't always unwarranted. In these times, it's the sign of a good writer and activist to be able to critically assess what you've written or said that's upset people. If you recognise that you may have been offensive or dismissive, or even taken a wrong turn in assessing something yourself, apologise. There is no shame in accepting fault and offering unequivocal apology for it.

Writing as a form of activism is hard and sometimes demoralising. Don't forget to pour yourself a wine sometimes and give yourself a break, both practically and emotionally."

Julie said: 

"Carly, I can say, hand on heart, that I don't care what 'people', in the general sense of audience, think. My post Think of the Child went viral, with more than 250,000 views on Facebook in the space of a couple of days, and given the subject-matter (children being raised by same-sex couples) there was a fair bit of negative comment. When I first drafted the post (before it was published) I checked with the family it was about to see if they were happy for it to be published (they were), and then again when it started to go viral (as I would have pulled it if they were uncomfortable). They were the only people whose opinion mattered to me."

Kate said readers have every right to an opinion as writers: 

"If you're true to your core moral and ethical beliefs then it is truly an opinion piece and readers have a right to feel a certain way, just as you have a right to your opinion. If it's a shitty, passive aggressive post then maybe call your therapist instead."

Nat reiterated the ‘wait before publishing’ rule: 

"If you write it, read it again an hour later. If it still rings true and feels good, publish it. If someone hates it, they needed to hear it and they will learn from it. If they never talk to you again, they really really needed to hear it."

Pip was wise as always: 

"I know that it can really hurt when people disagree with or even attack your views (however well researched and sensitively they are communicated.) That said, it's often those with a vested interest, who you have touched a nerve with, that respond the most angrily.
I think it's SO EASY to 'keep the peace' and not say your piece. But it's important to actually have some impact and be heard, in life I think. Even if that does mean shitting some people up the wall.

My feeling is that as writers and humans we have a responsibility to use our voices to talk about the important stuff (even if that is the difficult stuff.) I like it that you do that - that you choose to (kindly) say your piece - always diplomatically, sensitively and fairly.
I think in the blogging community there is a real trend towards 'shooshing' other women when they speak up about important stuff. Words like bully or shame are thrown about and personal/group attacks are used to shut discussion down.
I'm not sure why people can't just say 'thanks for putting your view. It upset me and I'm kind of freaking out. I am going to go and digest this - see where things sit after that' kinda thing, rather than trying to PROVE the writer wrong, change their mind or SHOOSH them up.
To continue to feel good about myself when others try to shoosh or diminish me - I look at brave people who didn't shoosh - and I try to imagine what they'd do.
For instance:

WWCFD? <-- what would Clem Ford do?

WWSYD? <-- What would Stella Young do?

etc
Then I'd talk to my online besties, and offline friends and family about how I was feeling and generally we'd all agree that it's important to talk about the BIG stuff. And then I'd feel a bit better. And eat a biscuit. And maybe have a TINY cry about the whole thing, just to get some closure."

(And I do silently preface a lot of my writing with "What Would Stella Do?"!)

Prue said: 

"I couldn't give a rats arse about whether people agree with me. You don't like it - close the fucking browser window!"

Roni wrote: 

"My self esteem and worth aren't tied up into what strangers think. The opinions of people that don't matter in my life simply don't matter."

Trish said:

"I have a couple of rules I made for myself. Rule No. 1: Everytime I write something or do something I do it in the knowledge that SOMEONE is going to disagree or not like it. It is my simple rule of life. It happened before I got sick and has been happening since humans existed. While I am happy for people to voice their opinion (after all that's what I am doing) I require that it stays in a mutually respectful way. If they break that rule than I am sorry but they don't have an point of view they have a disrespect problem. I ignore those people. People can also be competitive and when you get in posting "war" you can not win with them. 

Rule No.2: Resilience. No one has ever expressed an opinion that has bought my life to end and my resilience to keep going and stay focused on things I want to achieve in my life has always floated back up. There are many people out there, if something we do/say means or helps something to someone than its worth it."

How do you cushion the blows?

Edit: this is a great piece on what to do with too much feedback.

And also:

Here's what I think today.

Expressing an opinion openly is not bullying. Disagreeing with someone's opinion is not bullying. But the way a person goes about expressing or disagreeing with that opinion can be.

Online bullying is not only name calling, ridiculing and death threats.

It's the pack mentality of dissenting opinions that slowly build up. It's creating passive aggressive memes or social media statuses. It's tarnishing reputations through 'Do Not Link' tools. It's writing undermining comments. It's forgetting there's a person behind the screen. It's forming an opinion of someone based on their words alone. It's calling friends over to view and enjoy the fallout. It's invalidating someone's opinion and experience relentlessly. It's the idea that writers put their opinions out there so deserve whatever others dish out. It's slyly pushing people out of professional partnerships. It's only ever interacting with me when they disagree.

It's enough.

I never receive this incessant disagreement or people wanting to have the last word in my day job. So why should I put up with it when it relates to my online writing? Why should we?

These bullies are not welcome in my corner of the internet.

Write bravely, my friends. But be kind too.

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.)

What do you wish for?

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.)

 

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)

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."

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. 

Tips for meeting people at blog 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!

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.

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

Click here for more blogging tips.

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.

 

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?

Poster children for disability charities.

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."

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.

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

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?

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 fiancé 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.

Fangirl.

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?