Blogging for social good

On Saturday I'm giving a talk on a panel at the Problogger conference. The panel is about blogging for social good - I will be in esteemed company with nutritionist Emma Stirling, World Vision's Stephen Ellis, and 2012's Best Australian Blogger Eden Riley. What a panel! I'm so honoured!

When I began blogging - way back in 2001 - I never did it for awareness raising, I did it because I loved writing. My previous blogs were more like diaries. The awareness raising just sort of happened when I started this blog. It's part of looking different and living with a disability. Education is incidental. One day in 2010 when I was very sore, I blogged about it. I posted a picture of my face when it was infected, and I wrote about it. My doctor freaked out, worried I'd opened myself up to ridicule. Only I wasn't ridiculed. The support was incredible people asked questions about my skin. I realised I could tell my story on my terms on my blog. The Internet was understanding, compassionate and kind - and it was only recently - after years of blogging and many photos posted - that my photo was ridiculed.

I see blogging for social good as using your blog space and time to raise awareness about a cause or charity. Kind of like volunteering at a hospital or taking part in a fun run. Only you can use your words and photos to spread the message, and there's a chance you'll have a far reach.

My own story

I blog about what it’s like to look different. I do this to normalise difference. I write about the social and sometimes medical experiences of life with a visibly difference chronic illness/disability – a rare severe skin condition called Ichthyosis. Telling my story has led to freelance writing and speaking and teaching opportunities (including Daily Life, The Guardian, the University of Melbourne, the University of Western England and Writers Victoria) and shaping social perceptions around facial difference and discrimination.

Last year I was abused by a taxi driver – he worried my face would ruin his cab. I blogged about it, tweeted about it, it made national news. I put in three complaints – to the taxi company, Victorian Taxi Commission and Human Rights Commission and one of the outcomes I requested was to improve disability training for taxi drivers – to let them know that disability discrimination is illegal, and disability is more than guide dogs and wheelchairs. I called for participants through my blog and worked with the taxi company to develop a training video. That video is here.

Sharing my story empowers others to share theirs.

I receive messages from readers who are struggling with their appearance, or a new parent to a baby with Ichthyosis, telling me that my story has made a difference to them. Readers tell me they felt alone until they found my blog and can now see some hope for themselves or their child. They have also told me that because of my story, they're confident to tell their story about Ichthyosis to their families, friends or wider communities.

This is a recent message from a blog reader:

"Thanks for sharing your struggles. My 5 yr old son has Ichthyosis and you help me understand him better. You help me be a better mom. I wish there was something I could to to repay you that blessing.

It's seriously such a joy to receive messages like this and I'm so grateful.

And I've been able to meet so many people affected by Ichthyosis around the world. The friendships I've made are beautiful. Here's Jack and I in London in May.

Ichthyosis Awareness Month

People affected by the condition (both patients and parents) have found my blog and used it as a source of information, and told me that my story offers them some hope. But my story is only one of many, and I wanted to open my blog for others to share their story.

I asked more than 40 of my online friends affected by Ichthyosis – patients ranging from seven years old to in their mid 50s, parents of children with the condition, grandparents, the leader of a support group, a dietician and my parents – to share their stories on my blog throughout May. I asked them to show a life well lived – to give hope to others in the Ichthyosis community and also to educate people about the condition (including how it varies), and to break down stigmas of living with a condition that can be so visually confronting. The symptoms, appearances and experiences differ between everyone who has shared their stories. Some people have written about a coming of age experience - working towards accepting their condition, and others have written about how their lives have changed since becoming a parent to a child with Ichthyosis.

I collated their posts, editing them and providing feedback to each contributor (some post required more editing than others – not all contributors were experienced writers). I scheduled blog posts for every day in May alternating types of Ichthyosis, age, and location. Finally, I promoted each post twice a day with a picture collage on Facebook, numerous times a day on Twitter and once on Instagram. Promoting the blog posts on social media had a huge reach – most pictures received over 2000 views on Facebook (from 900 followers). I emailed each contributor letting them know their post was published, encouraging them to share it with their networks. And at the end of each week, I summarised that week’s posts in a picture collage on Facebook and Twitter.

As the month went on, lots of people affected by Ichthyosis read the stories on my blog, and shared them with their families and friends. The response was incredible - throughout May my blog had over 93,000 views! I had people contact me to ask if they too could share their stories on my blog too, and so I added to the project.

The contributors have been thankful for giving them a chance to tell their story - for some this is the first time they've been so public about their Ichthyosis. They’ve been excited to see themselves in print, and have also taken the time to read, comment on and share all of the other stories in the project. I’ve been able to put families in touch. I am proud that these stories shared are providing hope.

On a personal note, I enjoyed learning about the various forms of Ichthyosis and getting to know these (mostly online friends) through their stories. I also featured my parents’ stories, and reading these gave me great insight into the struggles they faced when raising me. My awareness month blog project was picked up by Fairfax’s Essential Baby site and The Australian Writers Centre, plus shared by a huge number of social media users.
You can read all of the stories in my Ichthyosis Awareness Month blog project here: 2013 and 2014.

The Internet can be brutal to people with disabilities and visible differences like Ichthyosis. I see many nasty comments on pictures of people with disabilities circulated on Facebook. I created this blog project to create awareness and to foster a positive community. So much respect was shown to the contributors to my blog - not one negative comment was received - and so many readers commented that they wanted more stories. I am now opening my blog up to guest posts from people affected by Ichthyosis (and all types of disabilities and visible differences) year round.
Sam, who was very reserved to tell her story, wrote:

"I wrestled for weeks to get my story to Carly for her project for Ichthyosis Awareness Month, as I come from a generation where networking didn't exist & even now I feel as though some may frown upon my having shared my past as openly but Carly Findlay & her awareness campaign work & skills in presenting our stories is fantastic and I thank her for encouraging to me do the article despite my reservations & it coinciding with a roller coaster week of family events. Thanks for reading & commenting."

Education

I always marvel at how far my blog reaches, and what it's used for. I receive emails from teachers and academics telling me they've referred to my blog in a class about diversity or bullying, or in a paper they're writing. Last week I received an email from a dermatologist this morning, telling me of a newly diagnosed baby. He wants to pass on my blog to the family.

"I am asking firstly if you would be happy for me to direct the family to your blog. Also, your advice in managing Ichthyosis is likely to be more valuable than ours and it would be beneficial to have your input."

This is why I blog.

For a little while I doubted my ability to help families when I felt unsupported by the people I'd hoped would find value in what I do through my blog. But getting emails and messages like these make me know that sharing my story is worth it and I don't have to be a parent to help other parents.

>>Advice
While blogging for social good is different for each cause, one piece of advice I'd give you is to create content that can be used for education purposes - advice or videos. Make them shareable, create little memes or infographics that can go with links to your blog. I've got a resources page that I can direct people straight to when they ask me what creams I use or what support groups they can join.

Charity awareness through my blog

I promote charities and causes I believe in in my blog. I have worked with Donate Life, the Heart Foundation (via Brand Meets Blog), RUOK? Day, World Vision, Sun Smart, Positive Exposure the What I See Project, and Love Your Sister. I've also promoted the Layne Beachley Aim for the Stars Foundation through my blog after I received a funding grant from them (I am now an ambassador for the Foundation).

Before Love Your Sister was launched, I asked Samuel Johnson if he wanted alternative media to spread the word. He knew me, he trusted me and my blog content, he wanted bloggers to get behind this cause, and he said yes. I was the first blogger to cover his story (via a video chat), and covered it through his trip – sharing posts from the LYS FB page, interviewing him mid-way, seeing him at PBEVENT last year, and welcoming him home. 



Here's what Connie Johnson from Love Your Sister said:

"Love Your Sister has received overwhelming support from communities large and small all over Australia, but one of the most powerful voices on our side has been the bloggers. With their generous hearts and clever blog pieces, they’ve spread the Love Your Sister message through channels that traditional media cannot reach, and with a trusted voice that commercial media could only dream of.

Of all of these amazing bloggers, Carly Findlay has been our most staunch ally. From the moment Samuel rode off into the sunset on his epic adventure to his triumphant return home one year later, Carly has been with us every step of the way, promoting the mission and reminding women everywhere to check their lumps and bumps. She’s there for us on Facebook as well, liking and sharing and educating. A like from Carly gets you a lot more views than a like from most other people!

We’re incredibly grateful for her support. She has been so generous with her time and effort. If you want to be as hip as a world record-breaking long distance unicyclist then you’ll do what they do… and Tune Into Radio Carly!"

I have also taken a keen interest in Donate Life – because Camille, one of my best friends was on the transplant list. Though seeing her struggle with doing every day things – things like breathing and walking that we take for granted – I realised the need for organ donation for people to get a second chance at life. I blogged about Donate Life Week several times. When Camille was due to judge a blogging competition to promote Donate Life Week, she asked me to be her back up in case she got the call. She got the call, and was given new lungs from a generous donor. And I was the guest judge, working with Peta and Kerrie from The Ground Swell Project, and recruited Matt from Dad Down Under to help judge too. The Gotye parody by Brooke Huuskes won best film, and this blog post by Alysha Herman won the category I judged. I was so grateful Camille got a second chance at life, and honoured I could use my blog to promote a worthy cause.


And last year, after sharing Tina's story about life with Ichthyosis in India, my readers and I wanted to help her. When her mother (her lifelong carer) died I started a fundraiser to help Tina out - we raised $1200 and bought her a cooling vest and deposited the rest of the money into her bank account so she can afford to travel to her dermatologist and to buy creams and other medications. She was so grateful.

>>Advice
I recommend approaching a charity or cause (or person) you believe in, tell them how you can help, who your audience is, how your reach will benefit them. I did this with Love Your Sister, and I've also done this when inviting guest bloggers to write about appearance diversity - for example, Robert Hoge, Turia Pitt and Paul De Gelder.

Get some testimonials from charities you've worked with. Debra Cerasa, CEO of Multiple Sclerosis Australia (pictured below) wrote this testimonial for me after I delivered a blogging training session to a group of MS advocates last year (I was paid to deliver the training).

"It has been my pleasure to observe Carly Findlay in public speaking engagements numerous times. The overwhelming observation I am always struck by, is her ability to connect with an audience. She is real, articulate and genuine. Carly has a warmth and connectivity that many experienced speaker could learn from."

Maybe you can become an ambassador for a charity or cause you believe in - show an NFP your readership and social media reach, like you'd show a brand this info.

Don't forget the little charities - and make sure the charity you're supporting is legitimate. Check out the National Charity Register that's run by the Australian Charities and Not-for-profits Commission to confirm you're supporting a registered charity.

Obstacles

I've experienced a few obstacles - and it wouldn't be authentic if I didn't share these.
There can be criticism around disability – assumptions from strangers about work ethic, whether you’re disabled enough, hierarchy of disability. This can also apply to your cause. There will be some people who don't believe in what you do.


Criticism if you “sell out” after so long of telling my own story. I remember the first time I was published on the ABC - no payment received - after about a year of blogging here. A woman with Ichthyosis told me how much I've sold out, how disappointed she was in me. I was also told last week that it's disappointing I see my disability as a money spinner by getting paid to write and speak about it away from the blog.

Not enough brands working with bloggers who blog for social good – I enquired about blogging for Genes for Genes Day and my enquiry was not responded to – even though I am a blogger with a genetic illness.

And it can be hard to get people on board for a condition or cause that is quite unknown. To blog is to be your own promoter - and I spent so much time spreading the message about Ichthyosis Awareness Month through email, on twitter and on Facebook. While I was disappointed that some people and organisations that I expected to get behind the project didn't, many others did - including Australian media personalities, and others in the Ichthyosis community.

Making an income

Generally I view blogging for social good as blogging without payment. But there has been one campaign I've done for the Heart Foundation which I received payment for, and I know other bloggers have done similar.

I've been lucky enough to make a little money away from my blog - developing my skills and expertise to be used in freelance writing articles and at speaking events. I also see myself as a blogging consultant - I've taught emerging writers blogging and advocacy at the Emerging Writers Festival in May, and am currently putting together a niche blogging course. Soon I will be talking on two other panels - about beauty and about disability art. All of these opportunities have come my way because of blogging.

I believe it is so important for disabled writers - all writers, really - to get paid for their work and lived experience. It is empowering and shows that companies value disability advice. I wrote a rant about this here and here last week if you're interested.

Other ways bloggers could make money through blogging for social good are through creating ebooks, setting up a consultancy and copyrighting in a speciality area.

Overall though, if your using your blog for social good, I think it's good form not to expect payment for writing about a charity or cause on your blog.

Blogging for social good is wonderful. It can raise awareness and money, build communities and also show that you as a blogger are a trusted expert in a niche area. It's giving back, using your voice to create change. I never thought blogging for social good would give me the opportunities and connections it has, and every day I'm thankful.

So, if you're passionate about a cause or charity, why not use your blog to raise awareness about it?

I've seen that quote circulating a bit lately, in the wake of Robin Williams' death. These words are so very true when it comes to blogging for social good.

On panic attacks, failures and making my own destiny.

I've sat on this post for a while now, stopping and starting - worried that it would be bordering on vague blogging, or that it's too risky to post. But as usual, the power of writing won out. It's really therapeutic.

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I recently had my first panic attack. A mini breakdown I guess you could call it. I won't go into the details of why but I can say that I felt so unhappy, so inadequate and devalued that I just couldn't face the day. It was awful - I couldn't breathe and couldn't control my crying. I felt like I'd failed at something I was really good at and enjoyed. And I grieved - even resented - that loss.

I felt like I failed. I felt like I couldn't stick through a tough time, like I gave up too easily. I worried that I put my happiness before a necessity. I really beat myself up.

I'm not proclaiming to know what regular anxiety is like, nor how to overcome it, but I do recommend talking to someone to help you through - a professional counsellor, a helpline or a trusted friend or family member.

Through the help of a counsellor, and some great support around me, I got through it. And I'm in a good space now. A happy one and I feel like I'm kicking goals - and most importantly to me - very supported, valued and respected. I still worry, things are still uncertain. But I'm ok.

How did I get there? I made a plan of where to next, and reflected on my many strengths and achievements. I also put together a presentation for a group of young people starting out in their careers - the preso was about when I've felt I've failed and how I got through.

Doing all of this was really reassuring. I came out of these activities feeling better about myself - accomplished even, and like I'd learnt something on my journey that I could pass on to others finding their feet in the world.

So I want to pass some of what I've learnt onto you.

My career path: what I've learnt

• Don’t let your day job define me
  
• Know career paths don’t have to be hierarchal
  
• Know that what I do outside of my day job can develop transferrable skills to bring into my day job
  
• Seek lots of opportunities to develop my skills, knowledge and networks.
  

How do I cope with set backs, disappointments and failure?

• Creativity as an outlet - I write to process thoughts, to feel a part of a community, to put my skills to use, to follow my dream
• Know that failure doesn’t define me
• Seek mentors
• Give it a go – don’t let preconceptions or low expectations or past failures stop me
• Look after myself.

I wrote a blog post on perfection versus excellence years ago, in the midst of university when I didn't want to be anything less than perfect in my studies. My then manager talked me through this unrealistic expectation of myself and wanted me to define perfection and then excellence. This is what I came up with.

“Perfection is when you are completely satisfied with the end product and you don't think it needs refining.

And excellence is when your audience is satisfied with your end product.”

Read that post here.

I also think back to this beautiful quote by Erin Hansen who writes poetry under the alias of The Poetic Underground.

"What if I fall?”



"Oh my darling, 
What if you fly?"

And Seth Godin's wisdom has helped me too:

"But what if I fail?"

“You will.

The answer to the what if question is, you will.

A better question might be, "after I fail, what then?"

Well, if you've chosen well, after you fail you will be one step closer to succeeding, you will be wiser and stronger and you almost certainly will be more respected by all of those that are afraid to try.”

How have I changed my direction when things haven't gone according to plan?

Right now I feel that there's a great uncertainty hanging over the sector I work in uncertainty so it is up to me to make my own destiny. This is what I've done:

• Surrounded myself with people who support me
  
• Talked to others about opportunities - everywhere!
  
• Written down my goals – being accountable can make them a reality
  
• Talked to a counsellor
  
• Know my limits and be honest to others and myself about them
• Take control of the change that’s happening around me - rather than let it control me.

For a long time - and especially since I've been doing more freelance work - I've felt like a square peg in a round hole. Numbers and law wasn't for me and at the start of my corporate career I found myself working at that, hopelessly. I finally found my niche, but I know I want more. It's lucky I can do both corporate and freelance work - at the expense of being very tired though!

I love this advice from Cheryl, about being a square peg in a round hole:

“Look at the job descriptions for roles you would love to do and undertake a skills gaps analysis – what skills do you have that will transition well into those roles (a common one is excellent resource management whether that’s people, costs or time) and where do you need to develop? Can you use your current role to develop any skills you’re currently missing or work on them on the side? Are there courses or classes you need to enrol in?”

See that amazing post on Business Chic.

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It has been a tough time after my holiday ended. Really tough. My confidence was shaken and I was ready to walk further away than I did. But it's taught me so much. It's made me realise what motivates me and makes me happy, and that I need to continue to make my own destiny. And I've learnt that doing things for my own happiness above necessity and expectation of others is ok.

Also, it's ok to say you're not coping, to cry and to ask for and accept the help of others. Because even if you feel like a failure in that moment, chances are, you'll succeed at what you're good at when you're given the chance and given the right support.

How you doing? Do you struggle too?

What path are you paving?

 

 

Advice for attending a blog conference.

I'm super excited to go to the Problogger Event next week. It's a four day weekend for me - a holiday in the sunshine state and a catch up with good friends, plus visiting the breakfast buffet more than once. But it's also worky - I'm going to drink all the bloggy advice (and the wine) and feel a sense of rejuvenation and leave filled to the brim with ideas.

There are a few awesome posts offering advice for attending blog conferences - check out Kiki and Tea, Talking Frankly, Kidspot and Impactiv8.

So I will just give three tips. I've been to a few conferences now, and here's what I've learnt.

What to take:

Your tablet or smart phone - for live tweeting and note taking, and for photo taking. A spare one if you have one. Usually you can connect to wifi there.

Your charger, or portable charging devices and a power board. Because lots of tweeting and photo taking drains batteries. There are never enough powerpoints at these events - a power board means you can buddy up charging with your blog buddy. I have a cool portable charger - I bought it from a vending machine at the train station. It's by PowerPod. I cannot believe I got it from a vending machine!! The charger can be recharged by plugging it in to a USB wall charger or computer.

A notepad and paper - for old-school note taking.

Comfortable shoes - you will be dashing between rooms for different sessions, standing up for lunch and dancing the night away.

Business cards. I get mine made by Vistaprint.

Use social media during the conference:

I like to live tweet. I see it as a double service - making notes for yourself and sharing the conference with the outside world (or those in other sessions). Taking notes this way is a great way to save your ideas via tweets and to make blog posts from them afterward.

Announce to your social media followers that you'll be live tweeting (some may be unimpressed by voracious tweeting but for many not attending, the live tweets are gold). If you can't be there, follow along #pbevent - I'm on twitter @carlyfindlay.

Here are my tips for live tweeting.

Being social:

Please say hello. Not just to me but to other bloggers you're connected with in cyberspace over time. We don't bite. I'm always so disappointed when someone says they saw me from afar but were too scared to say hello to me.

Don't place anyone on a pedestal and feel intimidated to speak to them. The blogger you think is a rock star is just like you. We all started without a blog. I once sat next to journalist Jacinta Tynan at a blogging session and struck up a convo with her via twitter before she turned to me with a friendly smile and a hello.

Blogging conferences can be a great change to meet up with friends, but the information overload, big crowds and hyper-catch ups can be tiring.Take some time out if things are overwhelming. I went to the pool and sat in the sunshine last year instead of going to a session.

I hope this is useful for you.

I've got another post coming up before Problogger - it's a prelude to my panel talk on blogging for social good - look out for that next week. And no doubt I will write lots of Problogger-inspired posts after the conference, like I did last year.

See you on the Gold Coast, or see you online!

 

Please support the Disability Voice campaign.

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

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

(Link to article)

(Link to article)

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

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

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

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

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

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

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

 

Feeling like a freak on the opposite ends of the spectrum

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

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

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

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

And so it continues, all through my life.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We're not here for your entertainment,

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

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

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

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

 

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

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

She wrote:

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

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

Kind regards from Germany"

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

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

Meet Hanka.

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

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

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

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

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

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

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

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

How I cope with Ichthyosis and working full time.

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

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

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

On perceptions

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

My first job

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

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

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

My day job

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

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

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

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

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

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

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

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

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

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

Freelance work

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

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

1) My health

2) My day job

3) Every other commitment.

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

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

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

On discrimination

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

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

Balancing it all

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

Resources

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

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

Top three tips

Look for employers who are supportive of diversity.

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

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

Footnote

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

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