28 September 2015

Quippings at Melbourne Fringe - We don't want pity, we are empowered. We are so proud.

Quippings - Disability Unleashed at Melbourne Fringe

Although it's a workday, I've got wine flu. Our four-show season of Quippings at Melbourne Fringe Festival ended last night. We celebrated with drinks and dancing. My body is sore from twirling a gymnastic ribbon and my throat is gravely from singing Khe Sanh. But I'm on top of the world.

Quippings is a Melbourne based disability performance troupe that I've been a part of for almost three years.

Quippings - Disability Unleashed at Melbourne Fringe

As we toasted the show last night, we talked about what Quippings means to us. All of us said that through it, we've found our tribe. These are our people. People who understand disability issues and aren't afraid to speak about them. We're not afraid to laugh at our disabilities - in a way that takes back our power. We invite the public gaze (literally in our Fringe show - beckoning audience members to look at us, and laughing and pointing at them just as the public has done to us) and we satirise the disability sector. It's such a safe space - body positive and sex positive. This isn't disability like many people assume. We remove negative connotations. We don't want pity, we are empowered. We are so proud.

Quippings - Disability Unleashed at Melbourne Fringe

During the toast, I talked about my first Quippings experience - being in the audience after The Other Film Festival around three years ago. New York actress Christine DeZinno Bruno was performing, and so were some of my Quippings colleagues. I just didn't know I would be involved then. I admitted to being a little shell shocked, my mind was open to butt plugs for the first time. Four months later, I received a message from Kath, butt plug educator asking me to fill in for a performer that night. Shit, I thought. I might have to talk about butt plugs. At a sex bookshop! But I don't know anything about butt plugs! Kath assured me I didn't have to. Phew! So I read out Untouched. It received roaring applause. And then, I guess, I became a performer.

Quippings - Disability Unleashed at Melbourne Fringe

This Melbourne Fringe Festival, our troupe comprised Jax Jacki Brown, Jarrod Marrinon, Kath Duncan, Natalie Corrigan, Ross Cottee, Sonia Marcon, Emma J Hawkins, Daye Han and I. There has been rock and roll, comedy, singing, spoken word, dance, a unicorn doing gymnastics and satirical skits. It's been so much fun. Moving too. I've cried in all four shows. It's been a difficult year for many of us - we're grieving from losing two friends (including Jarrod's partner) in the disability community. Jarrod said Quippings has kept him going. Jax told us last night that she moved from regional NSW to Melbourne because she'd heard about Quippings. Quippings has given my Adam a gift too - he was front of house this year - greeting audience members and setting up lights. His confidence has soared. He feels one of us.

Quippings - Disability Unleashed at Melbourne Fringe

When I talk about disability to some people, they perceive it negatively. It's a bad word. Disability doesn't belong to me. I'm not like those people, they tell me. They're uncomfortable yet earnest about disability - sharing viral posts of disabled people, overcoming. That makes me uncomfortable. We're not there for the public gaze unless we invite it. We don't have to overcome or be a viral sensation to become more 'normal' or make people feel comfortable about disability. But I am like those people - and I am proud of that. And I wish everyone who thinks this way could see a Quippings show and realise disability is not a tragedy.

My part in the Fringe show was reading out an amended version of my letter to my future child. As I read the line "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", I thought about how being a part of Quippings has meant that identifying with a disability has not been the worst thing that's happened to me. It's been one of the best things. My closed mindedness has become a little less and I've opened my world to beautiful friends, forward thinkers and the realisation that I'm not alone.

Quippings - Disability Unleashed at Melbourne Fringe

It's been hard work. We've given up about seven weekends and sent countless messages across the troupe, refining our performance. But so worth it. Our professionalism has been top notch - not at all hampered by accessibility issues. There's no such thing as too disabled to perform in Quippings, one performer joked. During our toast, we concurred we're the progressive disability community - there's no one doing what we are. I can't wait to see where it takes us next. I love us.

Thank you to everyone who has come out to see us play. 

Quippings performs regularly at Hares and Hyenas. Follow our Facebook page for our schedule.



24 September 2015

If you're wondering where I am...

I'm taking some time out. Completely overwhelmed, about many things. 

See you soon. Thanks to so many of you for checking in on me. 

21 September 2015

A new start, today.

On Friday I finished up at my day job. I'd been working in that role for eight years, minus about a year and a half when I did two or three other jobs and then returned. I knew it inside out - the processes especially. But in recent months, I felt less connected to the people - not through my own doing, but because of the processes. It became less personal. I felt like I'd progressed so far in all other areas of my life, just not in my day job.

The more things changed around me, the more I realised I need to make my own change. And so I did. My calling is the writing and advocacy, but it doesn't put food on the table, nor pay for weddings and holidays. I still need a day job. I sought change by applying for a new day job. I was successful and I start today.

I'm nervous and excited. Nostalgic. Relieved. My days will be filled with new things to learn, bigger responsibilities, new people to get to know. All still unbloggable.

As my colleagues and I said goodbye on Friday, I felt very loved. I think I did ok in my last organisation. I've got friends everywhere, one of my managers told me. One of my biggest skills is connecting people - and in 12.5 years at that organisation, I'd certainly done that.

The new of today will soon become routine. I'll adjust and come to know the role inside out. And that's ok because I've made my own change. It's time.


17 September 2015

A letter to CEO Susan Wojcicki: on bullying of people with rare medical conditions on YouTube

UPDATE: 3 October - the video has been taken down. Victory! Read about that on the South China Morning Post.

Dear Susan Wojcicki, CEO YouTube.

I am writing to you about cyber bullying on YouTube. You must be so proud of this platform you lead - it is a trove of entertainment and information. But you have reason to be so disappointed by the derogatory, hateful and misrepresenting videos on YouTube.

I have a rare, severe skin condition called Ichthyosis. It's medically challenging, but the social challenges (ridicule, exclusion, comments and stares) are worse. Fortunately the Internet has connected me with some amazing people - I've got friends who are affected by Ichthyosis across the world. It's a wonderful, supportive, resilient community.

On Thursday I was alerted to a video that features two of my friends with Harlequin Ichthyosis, and many other people with visible differences caused by medical conditions. The video was called '15 Terrifying Rare Birth Diseases of all Time'. I was shocked, hurt and and angry. And so very sad for my friends. Please don't watch the video. But do report it.

A YouTube Account called Elite Facts have stolen photos of my friends with ichthyosis and of others. My friends are devastated at the misuse and misappropriation of their photos. It's very upsetting for our community - especially to know that this condition is portrayed as "terrifying".

Elite Facts have ridiculed medical conditions and appearances. They've termed their appearances as 'terrifying', which does nothing to decrease the stigma of living with a visible difference. They are not informing or educating, they are exploiting and bullying. Through allowing comments, they are encouraging hate speech.

I have reported the video and so have many of my friends.

Here are my friends Hunter and Mui at their best.

Mui has been featured on CNN and done a TedTalk about her experience being cyber bullied. She's a rugby referee and she hand her parents are writing a book. Mui blogs here. See that smile?' Gorgeous.

Mui Thomas rugby

And Hunter has chatted to Katie Couric. She's studying abroad right now. She and her father have done great work raising money and awareness for the foundation that supports people with Ichthyosis.

Hunter Steinetz
Hunter Steinetz with Katie Couric

Both women are mentors and role models to children with Ichthyosis - and to me of course. I've not met them in person but I love them. (And I think beautiful smiles are part of the Ichthyosis gene.)

Mui and Hunter are not terrifying. They are smart, driven, positive and beautiful. They deserve dignity and respect. They were hurting so much, impacted by the video and crying at the comments. Look at them together as children.

Hunter tells me, "I am hurt and disgusted that someone would use my image and talk about my condition in a manner that only belittles, not educates. Elite Facts does not portray anyone in that video as a person. They treat those conditions as if it's a joke. I want them to understand that we are real people and we carry on our daily lives."

And Mui says: "I am of course devastated at what I woke up to as no one should have to deal with that. I felt that Elite Facts were incredibly blaise about their choice of material and words. What they did, hurt not just me, but so many others. It's one thing to raise awareness of visible difference. But this was certainly not the way to go about doing so."

They both use the Internet to advocate and educate on their own terms. Their experiences should garner more attention than shock factor videos such as Elite Facts (who reveal with their own actions, are not elite nor factual). The condition is hard enough without content like this being created and spread.

Susan, I ask you, as YouTube CEO, to ensure YouTube is a safe place place for people who look different. I ask you to take action against these bullies - the video creators and commenters. They are hurting real people - and in this case, spreading misinformation that scares the masses.

And I ask you as a mother to protect the vulnerable. To ensure that people like Hunter and Mui, and countless others who look different for whatever reason, don't have to fear stumbling across ridicule and hate speech like this on the Internet.

Thank you - I appreciate you ensuring videos like this aren't created, shared, commented on and perpetuated. We are not freak shows.

Carly Findlay

If you're being cyber bullied, you can get help at ESafety. This is an Australian government website - there will be equivalent websites in your countries.

You can report abusive YouTube content here.

Let Susan Wojcicki know what you think about bullying on YouTube by tweeting her.

EDIT: Mui's parents have started a petition to end shock videos on YouTube. Sign that here.


Lady faves.

This post was written for I Support the Sisterhood - Jordy Lucas' project. It's a website showcasing the talents of women doing great things - artists, entrepreneurs, social good makers... They shine! Jordy used to be on Neighbours, playing Summer. Check out her Instagram too.

Some writers I've met in real life: Kerri Sackville, Pip Lincolne, Clem Ford, Jax Brown, Em Hawker, Fashion Hayley, Nicole Rouge

It can be a little lonely being an online writer. That seems like a contradiction, right? I mean, we are connected to others all the time online – through social media, blogs, skype and email. I’ve formed so many friendships and even professional networks – and because blogging is mostly done by females, But the act of writing and connecting is done alone – for me it’s on my couch or even in bed, snug in my pyjamas and sometimes with a wine beside me. I write in the evenings and on weekends. I have a day job too, so I’m surrounded by people all day. But those who don’t write don’t often understand the loneliness and also the friendships formed from being an online writer.

Writing as solo pursuit – and of course writing my life - means I’m inside my head a lot. I think and dream and write constantly – my electronic and paper notebooks are filled with ideas and paragraphs and half-finished blog posts. I write about what it’s like to look different and hope add a more diverse face and voice into the media. I’ve been blogging for a long time – on and off since 2001 – my current blog is almost six years old. Through writing my life, I’ve come to know me, and also wider issues. In a podcast interview, Tavi Gevinson said something that resonated with me deeply: "In writing about my own life, I come to new ideas that are larger than myself." It’s been that case for me too – I’ve come to identify with and learn about disability issues, and immerse myself in that community. And it’s wonderful.

Most of my friends are inside the computer. On the internet. I’m not antisocial or withdrawn. In fact, I’m more social than ever – chatting away with the TV on in the background, or sending texts to besties through the day. And increasingly, my friends are crawling out from the computer, appearing in 3D at events and meet ups – and I relish those social occasions. The energy in that room is incredible.

I recently went to Problogger conference where more than 700 bloggers came together to learn and to socialise. Of these, less than 70 attendees were men. It was a fantastic chance to catch up with old friends and make new friends, and discuss blogging with people who truly get it. They know how hard it is to just turn off the computer when a bad comment comes through, and why I maximise my walk to work by scheduling social media posts for the day. They understand the need to jot ideas down as soon as they come, and are totally fine with a table of friends photographing and then Instagramming dinner (a really good friend shines light over a plate of food when the restaurant lighting is bad!). They also love the rush of crafting a great blog post or article.

At Problogger, there was talk of having an accountability partner. That is, a person you can tell your goals to, and have them keep you on track. They’ll check in to see how you’re progressing, give you a prod when you need it, and offer you a hug, a wine and lots of reassurance when you’re feeling like a failure. They’ll also celebrate your milestones. Because they believe in you. And you’ll do the same for them. I was thinking of who my accountability partner is. And I have a few.

I have a number of friends who I bounce ideas off. We all write about the same sorts of issues – disability, chronic illness and appearance diversity – and the politics and pride surrounding them. We are all really feisty, independent women wanting positive change for people on the fringes. It can be hard to discuss seemingly progressive ideas with others outside of the disability pride movement – and so it’s great to be able to have robust and supportive discussions with these friends. I call on one or two of these friends to proof read my articles before sending them off to my editors. And We are big sharers of each other’s work too. That’s super important.

I also have a really wise, caring friend who’s been a blogger for almost 10 years. She really knows blogology, and is a leader in forging her own path rather than following the masses, which I love. She’s not worried about page views or the latest trend. She cares about community and nurtures her own community beautifully. My friend encourages everyone to be their best, to live a creative life and just do things for the love of it. And she’s got my back.

A little while ago, I had an awful experience after I wrote an article. Of course writers put their opinions out there to be critiqued. But the delivery of the critique can hurt. A lot. And so when I was really hurting, she was there for me, checking in to see if I was ok, sharing and seeking lots of diverse opinions about the issue I wrote about over on her social media account, and reassuring me that I was still a good person despite a few people thinking (and saying) I wasn’t. Thanks to her, I felt so loved, and really cushioned during a not so nice time. Every blogger needs someone like my friend in their life.

It’s so important we show other writers we admire them by telling how great they are and by sharing their work. I always share things that are interesting and I really enjoy reading, and I do hope to boost the writer’s profile by sharing on my social media channels. Here are some blogs I love:

Pip Lincolne - reading Pip’s blog is like having a cup of tea with a friend. Pip also termed Lady Faves, and I've borrowed it for this post today!

Colour Me Anna – beautiful Anna writes about anxiety – I just love the way she uses colours as metaphors

Living with Bob – Michelle writes about living with a chronic illness, Dysautonomia.

Bruises You Can Touch – Carly-Jay writes dreamy verse, death midwifery and observations about life after a lung transplant

Frocks and Frou Frou – I LOVE Lilli’s wardrobe – especially the way she alters clothing to give them a personal touch.

View my original post on Jordy's website.

Listen to a podcast I did with Pip!


14 September 2015

What to consider when the media asks you for your story (about life with ichthyosis or facial differences or disabilities).

I receive emails from journalists and media makers asking me to tell my story about life with ichthyosis about once a month now. Most of these are for tabloid media, but some are for public media and well respected publications and programs. I've said yes to a few and no to more. My friends with ichthyosis and other facial differences and disabilities also receive media requests - some have taken opportunities up and that's great for them!

I've sold my story to two tabloid publications. I regret one of them because I had no control. It was sensationalist, they spelt my dad's name wrong and they hounded me doe the story. The other was far more respectful - letting me write a follow up article in third person, even. And I was paid well. I've been on radio many times, a couple of commercial TV programs and on many websites - and for the most part, I've had positive experiences.

I also write for a number of mainstream media publications - some of which could be classed as tabloid. But writing myself is different to being written about.

I blog to ensure I have control over the way my story is portrayed and how Ichthyosis is represented. This has led to me writing for mainstream media publications and speaking on radio and TV and some podcasts.

It's also led to me developing thick skin. Had it not been for my already developed online profile, I'd never give my story to anyone if I didn't have this resilience. I also have the benefit of a media degree and keen interest and a little knowledge of how the media works to help me make a decision. I have media contacts and prefer to pitch my story myself. As I've written previously, I prefer to write for publications that I read and respect, but sometimes I'll tell my story to those I don't, to help influence a new audience.

Tabloid journalists can be pushy. They can lurk in support groups, reading private discussions and then they pounce - assuring you your story is in good hands and will help others. They can prey on people at their most vulnerable, drawing out private details and photos through sneakily winning trust. (I'm cynical!)

Rare medical conditions such as Ichthyosis are not always portrayed in a positive way. Sensationalist, voyeuristic and othering language is used. Cameras zoom in on symptoms, dehumanising the subjects of the story,

Subjects of articles and programs are often portrayed as a victim or hero. Commenters can be brutal. (And even when you write your own story, there's a risk of the sub-editors sensationalising a headline.)

I shared Sarah's story in February. She wrote it for me. Sarah lost her eye as a result of domestic violence. I took great care in publishing it, Waiting six months after receiving it - she was safe from her ex husband then. I provided a trigger warning and links to support services. And an international tabloid wanted that story too. They asked me for her details and when I didn't pass them on, they tracked her down on Facebook. They pushed her when she was at her most vulnerable, convincing her to send graphic photos that she can no longer bear to look at. They didn't put a content warning nor link to support groups. She didn't know or read the publication when she was approached, and tells me she'd never read it now. She regrets it and wishes she'd listened to my advice.

Two friends - one with a facial difference and one with Ichthyosis - told me they sold their stories to media and regret it.

Jackie said:

"I [told my story to the media] and regretted it. Terrible article, made up scenarios and when I explicitly told them I didn't want it published after having a read through they said it was tough and was too late to pull it. I was distraught and there was nothing I could do. I was annoyed at myself too as I'm not naive when it comes to media, but at the same time wanted to set a positive example... can't win!"

Rebekah told me:

"I sold my story to a magazine here in NZ. I wish I had the opportunity to proof read it first ... they didn't really portray me the way I wanted them to. [I was portrayed] like I wanted everyone to feel sorry for me. I wanted to be portrayed more as someone who is out in society making a worthwhile contribution and making most of every opportunity".

But telling your story to the media might be a really positive, empowering thing too! A friend with quadriplegia told me that when a newspaper covered her story, she felt listened to because the journalists were genuinely interested. Your story might help many others, and it can open up some amazing opportunities like further media appearances and getting in touch with others who have your condition. A close friend got a cookbook deal after appearing on a tabloid news program. And the media outlet might be really awesome - I loved working on No Limits - as they allowed people with disabilities to be in control of our stories.

Last week a good friend contacted me for some media advice. A production company seems to be scouring the whole internet for people with Ichthyosis, wanting to make a film about patients with rare conditions meeting for the first time. I say scouring because two other friends have asked me if I know anything about this company. I don't know much, but I've also received three emails from them, asking for my involvement. I've turned them down. It seems they're preying on people with the condition.

I gave my friend the following advice:

It pays to do some research before saying yes. Here are some questions to ask yourself and the media representative.

  • Would you or do you already watch the show or read the publication?
  • What else has the film company or publication made?
  • How sensationalist is the publication or the program?
  • Will the title of the show be derogatory? (Think Embarrassing Bodies or The Biggest Loser.) What about the title of the article? (The Pick Me Up magazine article screamed I ALWAYS LOOK SUBNURNT!)
  • What is the reach? Is it going to mainstream TV? A large publication? Is it tiny?
  • Do you get paid? (You should!) Is it enough compensation to cover the instance that you'll be misrepresented?
  • Can you tell your story to other publications or programs, or are you limited by an exclusivity clause?
  • How much control will you have ever the story and filming and editing? Will they let you see the final draft and allow you to suggest edits?
  • What language do they use? Is it disability positive? Do they use person-first language ("person with disability")? Do they use language that portrays disabilities as tragedies ("suffers from", "wheelchair bound")?
  • Will the story be pitying? Will you be the hero of the story? (neither are good).
  • Will it be inspiration porn?
  • Can you handle the attention of being in the media - good and bad? Is there someone to support you?
  • How will this benefit you? How will this benefit others?
  • Will they represent you well - alter or edit quotes or even photoshop your image?
  • Have you got permission to tell your child's story, if that's what the media has asked for? What will be the long term ramifications?
  • Could you tell your story somewhere else - to a more reputable publication?
  • Could you tell your story yourself? (Maybe start a blog or start a YouTube channel!)

It's ok to say no, and it's ok to say yes, but only if you're 100 percent comfortable with it. I'd be very careful about how Ichthyosis is portrayed. It can be so exciting to be approached by the media, but regretful if it goes wrong.

Further reading

A Guide to Reporting on Disability - People with Disability Australia

Face equality in the media - Changing Faces

Advice on disability language - Arts Access Australia

Have you told your story to the media? Was it positive or negative? What advice would you give?

Did you like this post? Please consider buying me a drink!


11 September 2015

Rest in peace Megan Barron.

(Picture via I refuse EB)


I am devastated. It makes me so sad and angry that skin conditions can be fatal.

I woke up to read my online friend Megan Barron has died. Megan had Epidermolysis Bullosa (EB) - an extremely severe skin condition.

Megan was talented - she interned in the disabilities department of the White House, and wrote for policy websites. She was so smart and funny - and we always made light of our shared experience of rude encounters with strangers, something we had in common. Megan wrote a lot about life with EB, asserting her (our) right for respect.

We'd never met in person but I felt we shared a closeness, discussing difficulties of being an adult with a rare condition when so many others speak for us. Scrolling back through our messages this morning reminded me how much she's done to shape attitudes about skin conditions (both externally and in skin condition communities). I'd often message her to seek her opinion - I valued it so much. She really *got* disability politics and pride, questioning the way skin conditions are perceived, and reiterating she did not need saving. She was one of the few who share my strong opinion that questions about our appearance are intrusive.

Here's an excerpt from my favourite piece of her writing.

"Though Individually uncomfortable and at times, even amusing, these incidents collectively have left scars on me as real as the ones on my body. Rather than heal me as they intended (and you know the old maxim about good intentions), they helped break my self-esteem. They brought forth questions I’ve sought to stifle, questions that repeat in my head with sadistic rhythm when I’m out in public. Do I really seem that broken to people when I walk out the door? Does my body project a fate seem so grim that I actually need saving? Every once in a while I have to actively remind myself that what happened to me was an objective case of a genetic splicing error-not the Devil’s handiwork."

Do take the time to read her blog. She was such a good writer. So intelligent.

Rest gently, Megan. You are so missed. You are far too young to leave this earth.

I hope everyone who knew Megan is doing ok. Sending my love to her family and friends.

In the past nine months, three feisty, beautiful, intelligent, world changing young women I've known and loved have passed away. It's not fair. Life is so precious.






10 September 2015

A guest post from a parent who raises awareness of her child's medical condition.

When I wrote the article (and then blog post) about parents oversharing about their children's disabilities online, I wasn't sure what reaction I was going to get. For the most part, the response has been positive. So many parents have thanked me for writing it. Adults with disabilities have told me about when their photos, stories and illnesses were overshared in their youth. Amd some parents have told me they're changing how they share information online. There have been some harsh reactions too - clearly the post touched a nerve. And parents continue to overshare - the latest was a photo of a child's genitals in a "private" illness Facebook group. I was so angry. Since when is the need for medical treatment an excuse to strip someone of the child's dignity and privacy? Would that parent like their vagina shared on Facebook too?

A couple of bloggers wrote responses to my blog post. Meriah wrote

"We parents need to find a way to share our own stories as parents, and connect with one another while still giving our children the space and wherewithal to tell their own stories the way that they will."

And Alison, who was originally angered by my post wrote:

"But when the initial annoyance wore off, I realised that she had a point.

And it was not her post, but the way she made me feel that pissed me off.

I felt a bit dirty - embarrassed and ashamed.

Like I had made a mistake.

That none of my reasons for writing were about Gabe - but all about me.

Because she is right. Although Gabe can't speak for himself right now (and might never be able to) his story is his and his alone.

Do I have the right to share it for him?

So after a month of not knowing what to write so writing nothing, I am grateful to Carly for making me think more about the child in this blog. About his dignity. The digital identity that I have made for him. I am grateful to her for making me question the reasons behind this blog."

Responses from these parents mean the world to me. They've reassured me my opinion is still valid, despite my lack of motherhood status. Thank you Meriah's and Alison.

Another parent who's resonated with my blog post is (another) Carly, who offered a guest post for my blog. Carly is a pschologist and a mum to a little girl with a genetic condition. She told me she enjoys my writing - finding it humourous and refreshing, and will show her students my blog. She teaches the social construction of disability. Here's her response to my blog. I really like how she covers the challenges of telling our stories to tabloid media.


"When she was five months old my little girl (Ellie, now five) was diagnosed with a genetic condition, called neurofibromatosis type 1(NF). Having no experience of genetic conditions and never having heard of neurofibromatosis I asked the consultant when she would be better. The consultant looked at me somewhat confused and then said as gently as she could "she won't be better it's not cureable and its progressive".

I left the hospital that day somewhat overwhealmed by the notion that in order to come to terms with her condition I would first have to understand it. It felt somewhat like rubbing salt in the wound that my baby had been diagnosed with something I couldn’t even pronounced and that I would have to dedicate many hours of study to before I could begin to understand the implications for her future. Amidst my shock and confusion I was comforted by the knowledge that my career as a Health Psychologist would allow me to dedicate my research time to this condition and that I would be able to share any knowledge I gained with others. I left that first consultation promising myself and Ellie that I would commit to raising awareness of NF and to provide support to the NF community.

One of the first tasks I did was to write an article for a British magazine called 'Pick me up' when the article came out I was proud and excited, I felt that I was one step closer to making NF a house hold name, and although I was only paid a modest fee I was happy depositing it in Ellie’s bank account for her future. In the first couple of years since Ellie’s diagnosis I had a few stories written in local papers and even a national at one point, I was praised within the NF community for raising awareness and I truly believed I was. Then one day I taught a class to my students on representations of genetic conditions in print media (I am a lecturer in Psychology at Manchester Metropolitan University) I asked them to read various stories of genetic conditions, and tell me their thoughts but something unexpected happened; the students described the parents as self-serving; trying to evoke sympathy; they questioned the ethics of those parents who had sold their stories without considering what they may have used the money for and worst of all not one student remembered the name of any of the conditions! After being initially defensive I realised that lesson was something of a eureka moment telling Ellie’s story wasn’t raising awareness of NF because the final version of the story was written by the journalist with a different goal in mind.

Recently another mother with the NF community told her story to a national news paper and the headline was so sensationalist that she received a heartbreaking amount of bullying from people telling her she was selfish to have had children. This lady did not in fact "sell" her story she gave it freely, she thought she was doing a favour for a charity by raising awareness to help others. Ultimately it didn’t raise awareness of NF as the information pertaining to NF was inaccurate implying that it is terminal whereas it is actually extremely variable and unpredictable. This poor woman brought unnecessary negative attention towards her family and quite frankly the journalist should be ashamed.

Which brings me to Carly's blog post on "parent bloggers" and how much information we should share about our children, even when the words are our own. This is a topic to which I have given a great deal of thought and have come to the conclusion that my views on this are pretty much the same as my views on parenting as a whole, and you need to ask yourself 1) how does it affect your children now?, 2) how does it potentially affect your children in the future?, and 3) how does it benefit others?. I have read and re read Carly’s blog and I genuinely can’t understand why it was viewed as controversial, personally I think the blog presents an extremely balance view and rather than saying parents shouldn't blog about their children. Carly is simply asking parent bloggers to give consideration to what they say, how they say it and how the reader may interpret it. The latter is the hardest to do of course as we become so immersed in our own narratives that we cannot see alternative views.

Since my ‘genetic conditions’ seminar I have been much more mindful in my awareness raising and have refused many things because I didn't agree with the angle or over concerns of the potential aftermath and whilst I still do press and blogging I give full consideration to every word written and every picture shared. For sharing more specific details to benefit others I still do this within a closed FB group for people affected by NF, in this way there is a direct benefit from our shared experiences. But there are some details I have not. I will not share - they are Ellie’s story not mine, and if she decides to share them in the future that is her choice. I can't deny that I have personally benefitted from blogs where people share much more; have felt less alone when reading about similar experiences and ultimately realised my daughter is disabled though the way those blogs reasonated with me, and for that I am grateful. Thinking of one blog in particular describing two autistic children and judging it by my own criteria, I don’t think this blogger is oversharing. In fact exactly as Carly points to in her blog post I am sure every detail is considered and reconsidered and that many more personal and intimate details are omitted compared to those that are put in.

In closing I would like to say how grateful I am to Carly for inviting me to write this piece and if anyone would like to learn any more about NF1 please visit The Childrens Tumour Foundation."

Would you like to write a guest post for my blog? The guidelines are here.


07 September 2015

On othering. Dismissing people as being less human than we are.

This past week, the world was talking after seeing the image of a little Syrian boy washed up on the shore. Heartbreaking. Three year old Aylan Kurdi, his five year old brother Galip and his mother Rehanna drowned in the sea between Syria and Greece. The family was desperate to make a safe life, so they fled from war-torn Syria. "You have to understand, nobody puts their children in a boat unless the water is safer than the land."

Sydney Morning Herald reports Abdullah Kurdi told the Turkish news he hopes that his family's story, his little boy's picture that is so hard to look at yet went viral, will make the world see the humanitarian crisis.

"The things that happened to us here, in the country where we took refuge to escape war in our homeland, we want the whole world to see this," he said.

"We want the world's attention on us, so they can prevent the same from happening to others. Let this be the last."

BBC World News says the Kurdi family made three prior attempts to escape Syria - paying money to people smugglers to get them to Canada to stay with relatives. The fourth attempt was fatal. (Kurdi has been a surname given to the family by the media - and Aylan is the Syrian interpretation of Alan.)

"Alan set out before dawn that morning in Turkey for the Greek island of Kos with his father Abdullah, mother Rehanna, and five-year-old brother Ghalib. The Kurdis wanted to reach Canada to reunite with Abdullah's sister Tima, a hairdresser in Vancouver.

The family joined with a small group of refugees in Bodrum to attempt the 4km (2.5 mile) crossing to Kos. Abdullah texted his sister Tima from the beach to say they were leaving. "I passed the message to my dad in Syria," she said, "Abdullah is leaving now, pray for his safety."

But her prayers went unanswered. The two small boats were hit by high waves minutes after they set off and the captain fled. Abdullah Kurdi found himself fighting to save his two young boys. Of the 23 people in the group, 14 are believed to have died, including Abdullah's wife and sons."

Mainstream and social media has reacted strongly to this story, particularly the photo of Aylan. Many believe his photo should not have been shown, but there are also arguments that this photo will change the way we think about and work to make refugees safe. Tara Moss has written a great piece on the ethics of sharing photos of the deceased.

I watched the story being covered on The Project - they chose not to show the photo (although that link does show it - graphic image warning). Host Carrie Bickmore broke down, and Chrissie Swan said something very profound - perhaps as game-changing as Aylan's photo.

When Chrissie said "It's very easy when you're using words like refugee and asylum seeker and 'othering' words,", I applauded. Not because of the actions she's describing but for raising the issue of othering on national TV.

So many times privileged people sit back, apathetic, prejudiced and judgmental, saying 'those people aren't like me". But refugees, the disabled, indigenous, Muslims, black people, the LGBTI community - they're all people. They're just like us. They are us. Little Aylan is someone's son - someone who loved him enough to put him on a paper boat to give him a better life.

The most vulnerable in the world need our help and compassion, not othering.

I posted the above passage on Daily Life's Facebook page and then on my own. People empathised and wept. Later I read the most racist, narrow minded, violent comment from someone I know. I deleted it immediately. I am revolted to know someone who has these feelings. It was othering at its worst, denying that refugees are human, that they love and they're looking for a safer life. This 'friend' is no longer.

I've othered in the past - perhaps due to media and friendship influences, and a lack of knowledge. For that I am so sorry.

James Norriss, from There Are No Others blog explains the concept of Othering:

"By "othering", we mean any action by which an individual or group becomes mentally classified in somebody’s mind as "not one of us". Rather than always remembering that every person is a complex bundle of emotions, ideas, motivations, reflexes, priorities, and many other subtle aspects, it’s sometimes easier to dismiss them as being in some way less human, and less worthy of respect and dignity, than we are."

Othering is not talked about much in the mainstream media. It is more so talked about by those who experience and are impacted by othering language. So, it's very important presenters on prime-time current news shows address the issue.

Othering is when I've been told I'm not disabled because disability has negative connotations.

It's when they've said my mum's not black like other black people (and so it's ok to make racial slurs).

It's when someone wishes I'd have told them about my friend's disability before they met her.

Othering is a former friend writing "I've got many gay friends but I wish they didn't live this sinful lifestyle".

It's watching the news with apathy, dismissing people killed at sea as "just migrants".

Othering is when someone tells me "I love taboo and politicallly uncorrect words. At work I used to get in big trouble for referring to people with a disability as retards. But I can get away with calling my colleagues retards. Why is retard such a taboo word?"

It's newspaper headlines and politicians calling certain religions "death cults".

It's when a parent begs for acceptance for their visibly different child but blatantly states they will not accept gay people in the community.

Othering is when a stranger tells me I'm really attractive, despite my face looking like it's burnt.

Othering is when a waitress tells me my friend in a wheelchair "will have to sit at a different table so they don't get in the way", and then being incredibly nice to them when she sees how good looking my friend is.

The impact of being othered is a refugee lying about being a student in Australia, and visiting his parents in Sydney, because "the words asylum seeker and refugees are very bad words in Australia". He tells little white lies to make others feel more comfortable.

Othering is divisive. It's biting. It's dehumanising. It needs to stop.

Further reading

How we can help refugees

Talking Frankly's amazing piece on how she feels about the refugee crisis

To the mother of Aylan - a letter by Rebecca Bowyer

How artists have responsed to the tragedy of Aylan and others killed at sea (graphic - yet beautiful - image warning)

A Chrome plugin that changes "illegal immigrant" and other dehumanising terms to "human"

Spread the word to end the word has great resources about why the R word is unacceptable.

Tamzen Temple wrote about othering too.

A beautiful welcome for refugees

06 September 2015

Wedding planning.

It's just over six months until our wedding! Six months. I cannot believe how fast the time has gone. When I think forward to our big day, I'm excited that we've got so many of our friends involved in making it special.

Right now I've kicked into planning mode. I'm so glad that I've done a lot of the big ticket items already (savings account, venue, dress, shoes, suit, cake, photographer, celebrant, DJ, MC, florist), and now we're just focusing on the smaller details. I feel lucky to be an event planner in my day job, because I feel seriously organised. I'm hoping to have the whole thing done by December. Is that too crazy?!

As I wandered through a wedding dress store yesterday, I thought about how it was 15 months ago since I bought my dress. I'm really glad I bought it then, because walking through those stores just did not inspire me. The wedding is becoming more DIY as my eyes glaze over at how wedding paraphanelia is both too boring and blingy for my taste. I want unique and colourful and fun. I also don't want to buy anything that I won't wear or use after the wedding day (I might even wear my dress again!). Lucky Camille is one of my bridesmaids and she's ready to get crafty. Paper invitations, a bag, bouquet and jewellery are on my to-do list for the next month. And a big trawl through Etsy of course.

I'd love some advice on good hairdressers in Melbourne. Let me know your tips.

Also, I've been wondering how I can get you, my blog readers involved in the day? You've been so lovely and supportive, so I'd love to 'have you there' to celebrate with me. Have you got any ideas?

Tell me your best wedding tip!



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