26 January 2015

Using social media mindfully and for social good is not graffiti.



Saying social media has as much place as graffiti frightens and disappoints me no end.

I'm one of many, many people using social media for social good, and these words feel closed minded, insulting and callous.

I'm tired of people who don't use social media getting prickly at the thought of what might be happening online without even taking a look.

Social media fosters diverse, important discussion. It is also used to entertain, educate, connect and let a broad audience know how policies, prices and change impacts on individuals. It’s a public, current census, identifying the state of the world. And graffiti is not just ugly scrawl. Have you seen Hosier Lane?

I am tired of people who don’t use social media tell me that it’s dangerous, pointless and reputation ruining. I feel sad that such people will never open their minds to the connection and change that social media can bring.

They’ll never know how wonderful it is to form a friendship with a like-minded person from across the world. 

They'll never know the satisfaction of being offered writing and speaking work after a company discovers them on twitter. 

They'll never know how life affirming it is to connect with others who have a rare severe illness after half a lifetime of being alone.

They'll never know the relief of someone who has lost everything receiving support after a natural disaster - through generous, can-do people banding together online.

They’ll never know the chills experienced receiving an email to tell them their words have changed their life for the better - because until they came across a blog or a tweet, they thought they were all alone.

They’ll never understand how program we watch or listen to alone can be turned into a community event with the second screen.

They’ll never know how a blog’s following can raise $20 or $200,000 for people in need.

They’ll never be able to experience the pride of taking an online community into an offline community.

I can't begin to tell you how frustrating it is having to prove that I'm using social media for good - because attitudes against social media combined with inexperience set the standard. In a meeting with a superior, I was told that there are concerns that I am too passionate about social media, disability and appearance diversity, and this might be a problem. When I invited them to have a read of my blog and social media, I was told they don't use the medium. 

I am accountable for everything I write online, and I am happy for anybody to read what I’ve written. I use social media mindfully, at all times. And if it wasn’t for my positive work on social media, other leaders would not be asking me to work for them. It is confidence shattering hearing people tell you they don't believe in what you do because it involves social media.

Of course social media is used poorly. I’ve been on the receiving end of poor use. Hell, I’ve occasionally made some poor choices when on social media, I regret losing a few friendships through it. People are bullied online. Reputations are ruined. Information is leaked, or misinformation spread. I’ve seen some terrible hate speech. I see it every day. But I see - and experience - how the good outweighs this negativity thousandfold.

But these people - the ones who don’t use social media, who think it has no purpose, dangerous even - have got to start trusting those who use it well. Enough with encouraging employees to dob in their colleagues. Enough with the distrust yet lack of willingness to explore the positive options.

Base model behaviour on those who who using social media for social good, and not on those who aren’t using it well at all. I challenge whoever it is that alerts those in charge about bad things happening on social media, to alert them to the good things too. 

See that anteater up there? That photo was taken when I was walking through East London. There's a bit of scrawl around it, but the thing that stands out is the beautiful artwork. Look at the detail, the dedication to create and preserve it.  And that's the same as with social media. There's some negative talk, but it's overwhelmingly positive, if you just take the time to explore.

What I do through blogging and my social media channels to create social change is more than just illegal scrawl on an abandoned train.

23 January 2015

Appearance Diversity: "Having no hair does not define who I am."

I first met Sarah online in the Blog With Pip course. I was struck by her heartfelt, reflective writing. Several months later we met at a blogger's dinner.

It wasn't until I saw Sarah's video for Edenland''s lipsynching awards that I knew she was bald. Her video was so bold, it did make me smile.

I asked Sarah to tell her story for my Appearance Diversity series, and she said yes! She writes so beautifully and really explains how being stared at feels like. Meet Sarah.



"I am bald.

I have no hair and I wear a wig.

I have Androgenetic Alopecia, which is similar to male pattern balding. I have never really considered it a disability and never really thought about it as an appearance diversity issue, which of course it is. Because, we are not all born with a head full of hair, or if we are, we are not all destined to keep it and with sayings like “bad hair day” and “crowning glory”, it can very quickly define who we are, and cause extreme lack of confidence if we are not blessed with it.

Androgenetic Alopecia is also known as Androgenic Alopecia. It affects far more women than people realise. Estimates vary, but around 10% of women appears to be considered prudent. In women, it is characterised by diffuse thinning all over the head, as opposed to men who lose their hair on the top and sides of their heads alone. It is a sign that something, usually hormonal, has gone awry in the body. In my case, and many many others, they have yet to find what exactly it is that is the cause.

Mostly we suffer in silence, watching our hair end up on our pillows after a night’s sleep, slipping down the drain after we have washed it, ending up in the brush after we have brushed it.

For those of us that are afflicted with a more serious case of it, we try to hide it wearing scarves, hats and the like. 




I started losing my hair after the birth of my daughter 22 years ago. I went to a dermatologist who explained to me that what I had was Telogen Effluvium which is something that can occur after childbirth. It is where the hair goes from the growth and transitional phase straight into the resting phase, which results in a mass shedding of hair. I was told that it would recifiy itself. It never did.

In my thirties, my hair had become quite thin, especially on top, and, living in the UK at the time, I went to a trichologist (a specialist in hair loss) in Harley Street in London. The woman I saw told me that whilst she could recommend laser treatment and various supplements, the chances of them working were slim. It is something I would have to live with, she had said. I appreciated her honesty, and decided that was what I would do. I would live with it.

Over the years, I watched my hair thin even more, but largely, and if I am honest, I have no idea why, it didn’t affect me. I used to sometimes wish for long flowing hair, but also realised that was foolhardy. Why torment myself with something that could not be. However, in late 2012, at the age of 45, I realised that I had lost so much hair, that people had begun to obviously stare. Previously, I know that people noticed and would politely avert their eyes, but now, instead of looking at my eyes when they spoke to me, people’s eyes would be fixated at my head.

By this time, I was living in Australia and so I made an appointment with a hair loss clinic. I had thought that perhaps technology had advanced and that perhaps there was something I could finally do. Alas, it was not to be. The gentleman told me that the follicles on my head had in fact closed. He explained that hair loss is really only treatable in the first five years as after that the follicles atrophy and eventually close. Since my condition had been going for over twenty years, I was effectively untreatable.


I didn’t feel that devastated to be honest. I just took the news and figured it would be okay.

I went home and researched all the possible options I had.

Hair transplantation was not an option as the technology, despite massive advancements, is still in its infancy and according to anecdotal reports was still a bit hit and miss, and a sizeable cost. My other two options were to live with it or wear a wig.

I opted for the latter.

Of the hair replacement systems out there, I tried two. Both involved me having to take the decision to shave off what little hair I had left of my own. As I watched my wisps fall onto the floor I admit to feeling a great sense of loss. I wondered if I would ever have my own hair again.

After trying the lace system, which is a system whereby human hair is knotted onto a lace-like base and taped to your head, I settled on a vacuum wig which is human hair melded onto a silicone cap that suctions onto your head. Both have pros and cons, but in the end, for me, the vacuum wig was a better fit. It is a very expensive system, but for me it is the most natural looking, which means I can get on with my day without worrying if people are looking at me thinking I’m wearing a wig.


I now have a head full of hair and people do not stare. I feel “normal” (whatever that means). It means that I can talk to people and have them fully engaged with me, rather than what is missing on top of my head. I love it.

I am not ashamed of my baldness. I embrace it. I am empowered by it. I have taken photographs of myself bald and put them on my blog and Instagram feed. I am happy to remove my wig to satiate people’s curiosity and also to use it as a way to educate. As often as possible, when at home, I do not wear my wig. I admit, this freaks my son out a little, but it’s good for him to get used to me and also to see me comfortable with myself as a person.


I do wear it when I am out. This is largely because if I go out wearing just my skull cap (like a beanie, but much thinner), I find people assume I am sick. Because I don’t have Alopecia Totalis or Alopecia Universalis, which is complete smooth baldness, because I have a little stubble on my scalp, people assume I am a cancer sufferer. They come up to me sometimes and ask me what I have or what treatment I am having. They are shocked when I say that I have alopecia. Almost like it is more acceptable to be sick with cancer and have no hair than it is to have Alopecia and no hair. So weird, our social mores.

However, being human, I had not quite found the courage to walk outside completely bald until a recent trip to Daylesford. It is exposing to not have hair, and I don’t enjoy the stares. But we had booked a trip to the Bath House and whilst you can swim in the vacuum wig, I do worry about how the water treatment will affect the hair, and so choose not to wear it. I wore instead my white skull cap. However, it was busy and with all the splashing it became quite wet. My husband urged me to remove it. And so I did. My first appearance as just me. In all my bald glory. I was terrified.

People did stare. They couldn't help it. I understand. It is not everyday a bald woman enters the room. And I know they mostly assumed I was sick. A couple of women even moved themselves so they could get a better look and I did find it a little disconcerting at how obvious they were - they could not stop staring, like I was the hired freak. It worried me the example they were being to their children who were with them. But I had to get past that. I was there with my husband and 16 year old son. I focussed on them. And within a few minutes I forgot about the other people. By the end of our two hour session, I was wonderfully relaxed, and felt entirely liberated.

I am not going to lie and tell you that I have ditched the wig. I do love it so I wear it. But if I am ever in a situation where I find myself not being able to wear it, I think I will be okay. For me, it is being proud of the person I am and not letting my lack of hair define who I am. It is about saying my hair does not define my appearance as a woman, or my role as a woman. It is about saying that I own my hair loss, and adjusting my sails accordingly. It is about acceptance. It is about self love. It is about letting go.



If you would like any information about my hair replacement system, please do get in touch via Carly, I would be more than happy to answer your questions.

Much love,

Sarah"
Sarah blogs at Sarah's Heart Writes, and you can follow her on social media at: Facebook, Instagram, pinterest, twitter.

21 January 2015

Disability media and Attitude TV - "Changing attitudes will change lives".

AttitudeTV has recently come across the ditch, and has been airing on ABC TV in Australia each Saturday at 6.30 and on iView. It is a New Zealand made show focused on people with disabilities. It also holds the Attitude Awards - each International Day of People with a Disability.

In Australia, The Attitude Foundation - chaired by former Disability Discrimination Commissioner Graeme Innes - wants to create an Australian equivalent of the show - my thoughts on that later. 

I have watched episode one and three of Attitude, and will catch up on the others on iView soon. Graeme Innes wrote about episode one on his blog.


Episode three of Attitude featured a story about Amanda Lowry, who fell off her surfboard in an accident, and was paralysed from the neck down. The program began with Amanda talking about how active she is, and then showing her in the Auckland spinal unit - a week after her accident. Her whole life has changed. She said “everything has been re-written” - explaining how her arms and legs don’t work and she needs help going to the toilet. She was on her way to doing her PhD - and her partner was going to be the primary carer of their children while Amanda went to work. But life changed suddenly - for the whole family. 

The program showed Amanda in rehabilitation, and the way her partner had to make adjustments to their living arrangements to support Amanda’s acquired disability. They were going to live in temporary accommodation after the rehabilitation unit - to allow for the physical support Amanda needs for her disability. Amanda was also very apprehensive about seeing her children after leaving rehab, because they had not seen her since before the accident, when she had full body movement. She spoke of her three year old daughter Lola being upset about her newly acquired disability, describing her mum as “broken” - hoping that if she takes care of her Mum, Amanda will be fixed. 

In the hospital, Amanda said she will do everything she can to return to the life she had before the accident. 

At the end of the program Amanda said she will never accept her disability. I hope that one day she does accept it, that she finds connection in community and is proud of her identity - disability and all.  

I watched the follow up story which showed Amanda's grief - she misses her 'old' life so much.

One very positive point was that the program acknowledged Amanda is in a same-sex relationship - which shows broad diversity. 

Watch Amanda’s recovery story here , and her new life story hereand follow her on Facebook.




I am committed to increasing and celebrating disability led and featured media in Australia. I believe in Attitude Australia's mantra that "changing attitudes will change lives".

We need an Australian series of Attitude. We need to see how disability can happen to us at any time. Viewers must be able to get a true perspective of how people with disabilities live - and see the hard times and the good times. 

I believe the Australian series must be disability-led, and must show the diversity of disabilities - acquired and congenital - and the reasons for this are twofold. 

I think a lack of disability diversity portrayal:  
  
1) doesn't give people permission to identify as having a disability if they don't fit in the stereotypes of disability, 

and 

2) doesn't educate the wider public about disability, so they might not see their discriminatory behaviour (as was the case with the taxi driver incident I endured). A friend of mine recently spoke about how once she was given permission from Stella Young to identify with having a disability, she sought the help she needed to get through her studies. 

While we've only seen a few episodes of New Zealand's Attitude, I hope that an Australian version will feature more stories of people feeling empowered and proud and accepting of their disabilities - showing what life is like out of rehabilitation and what success looks like. The Australian disability community has been critical of the limiting ways the show has portrayed disabilities over these few episodes. 

And an Australian Attitude must reach more than just an audience made up of the disability community. It needs a prime-time spot. Without going mainstream, it’s merely preaching to the converted.

Attitude is now in its 10th season in New Zealand - it first aired in 2005. According to the NZ government broadcast funding agency's website, Attitude TV receives over one million $NZ of funding. I implore Australian television networks and government to have the same commitment to finance and longevity that Attitude New Zealand has received. 

We need disability media now more than ever. 

You can help Change Attitudes by supporting the Start Some Good campaign. We are crowd-funding our first Australian programme, and we’ll build to an Australian series. Join us today to help change attitudes towards people with disabilities.

Follow the Attitude Foundation on Facebook and Twitter

This post was written for the Attitude Foundation - no payment was received. Opinions are my own. 

19 January 2015

Wedding invitation sneak peek

I am hesitant to share too many details about our wedding on my blog or social media. I want it to be a surprise - for our guests, for our friends who can't be there on the day, and for my fiancé, of course. I now understand the element of surprise that brides want for their wedding. Only my Mum and bridesmaid have seen my dress, and I've had some fun with Mum showing her my secret Pinterest board of wedding inspo. I feel super organised, to avoid stress and rushing toward the end of the year. I can't wait for the big reveal - bring on March 2016.

Yesterday Camille (my bridesmaid) spent the day developing the design elements for the save-the-dates and invites, and closer to the time, these elements will be worked into the menus, table numbers and thank you cards. We are sending out email save-the-dates soon, followed by invitations, directions and advice about Melbourne in the mail.

I was inspired by my walk through The Tuileries in Paris last April - and this has been the base of the colour scheme for the wedding. These are my colours. I knew they would feature in the wedding immediately on that grey afternoon in Paris.

And so Camille worked her magic in photoshop and illustrator to put together a completely beautiful set of save the date cards and invitations. Fonts were chosen from DaFont within about a minute - we selected two fonts that are, as my friend said, "so evocative of love and happiness". They're titled 'Always and forever' and 'A ray of sunshine'. We laughed because she has a graphic design eye and I have a writer's eye - directing her to follow the writing style guide of minimal capitalisation and a strict date format (I did not step into Bridezilla territory, I promise!).  And Cam and I worked together to create a clever graphic - I'll let you know how it was done after the wedding!

Here's the almost finished draft.

Wedding invitation perfection. I am so lucky to have a BFF-bridesmaid who is amazing at graphic design. Very exciting!

16 January 2015

Getting shit done. On being productive.

I'm a busy person. And I enjoy it. I don't like to complain about being busy because most of what keep me busy is my choice. On top of a day job I maintain this blog, do freelance writing, some speaking events, cook, socialise and sort of keep house. I never switch off. My mind is ALWAYS working.

 

Last weekend, I was pretty sore and so I stayed home for most of the time, apart from going out to breakfast and picking up a few groceries on Saturday, and meeting up with friends for a late lunch on Sunday. Still, I got stuff done - completing six pieces of writing (five for my blog and one commissioned piece) and drafting the content for the blogging course I'm creating. I also workshopped the course graphics with a friend. I was proud of my productivity. And on Wednesday morning I got up really early, excited by potential, and worked for an hour and a half before I set off for my day job. Productivity plus.

People have asked me for some tips for getting shit done. Here's what I know and do:

Lists and tools

✓ I make to-do lists, checking the items off as they're done.
✓ I have about 10 blog posts in draft. These are all made in my iNotes, and they sync across my iPhone, iPad and MacBook so I can access the notes anytime.

Writing and social media

✓ I do a lot of writing and work in bed or on the couch! This is probably not great for posture, but I feel rested doing it this way!

✓ I work up to writing big things by writing smaller things. So I might start with replying to an email-interview or an easy post like this list post.

✓I batch write. I spend a night writing multiple blog posts - often over a bottle of wine.
✓ I write a blog post and create the social media posts (text and images) at the same time. Then I can just copy and paste these when the post goes live.
✓ I often rework Facebook statuses into blog posts - copying and pasting these (and relevant comments) into iNotes and then expanding on what I've written for a long form post.
✓ I bookmark news items and blog posts that I want to refer to or share later, and then paste the links into the relevant note if they will be used for a blog post.

✓ I do social media in bed from 6.30 - 7.00 am, checking posts, scheduling posts.

Around the home

✓ I have a cleaner - the money spent means I have time to do the other stuff.
✓ I try to prepare one big meal for weekday lunches on Sunday - sometimes in the slowcooker. I cook easy stuff in the week. Adam helps a lot with food preparation.
✓ I eat well and get lots of sleep. I should exercise more.

Multitasking

✓ I multitask. TV time at night is spent writing, replying to emails or making social media posts. I often listen to podcasts or music while writing too.
✓ I learn by listening. My attention span for long reads is so poor now that I find that I learn more by listening to podcasts.
✓ I make the most of day job lunchtimes by making the phone calls that need to be made in business hours.
✓ I make the most of my commute by scheduling social media posts. There's not enough time to read a book or listen to music. Sometimes I write on the train.

Time management

✓ I don't keep a calendar for stuff outside my day job. For some reason I just remember it all. I do break my day into chunks during my day job - and this works well for that stuff because it often involves meetings with others or doing things for others, but I don't follow such a schedule when I work for myself.

✓ I make time to do what I love. Lots of people tell me they wish they had more time for writing. I recommend setting aside time to write 15 minutes a day. And then if you enjoy it, build that time up.

There are things that I am not great at - like keeping up with invoices, keeping an immaculate house or just switching off and stopping - but I love what I do and it doesn't feel like work.

 

How do you get shit done?

 

14 January 2015

Rick Guidotti from Positive Exposure was in town!

Guess who was in town?! My dear friend Rick Guidotti, founder and photographer at Positive Exposure. He was in Australia for the Skin to Live In - skin impressions project.

Rick humanises medical conditions. He photographs people with differences - giving viewers the chance to see sheer beauty. And his photography enables his subjects to see beauty in themselves.
I saw an illness support group that featured a photo of the symptoms of the condition - my first thought is that this is dehumanising. If we remove peoples' faces and only focus on the medical aspects of illness and disability, how can we build confidence in these people?

This is why we need initiatives like Rick Guidotti's.

I last saw Rick at his studio in New York City. Rick and I came to know each other at The Other Film Festival in 2012 - we met on a photo shoot for The Age and then hung out all week. When he told me he was in my city this week, I was SO excited!

He has an amazing ability to make everyone he meets feel great about themselves, and this translates to physical beauty in photographs.

Rick attended the FIRST Conference in June and last night he showed me the photos he took there - just gorgeous.

I was so happy Adam finally met Rick! He took about 600 photos of us for our engagement. I'm in my favourite person sandwich.
Such a fun night! I love being able to meet such amazing people who really believe in what they do - Rick is my appearance activism hero.

Check out Positive Exposure's PEARLS Project and follow the organisation on Facebook.

12 January 2015

Appearance Diversity: Changing the Face of Beauty (#imready for #15in2015)



 (source)

Through appearance activism by blogging and social media, I’ve been fortunate to meet a lot of people doing amazing things to promote appearance diversity. I’ve been chatting to an Australian woman, Catia Malaquias, whose young son Julius has Down’s syndrome (both pictured below). She and Julius are doing a great job of promoting diversity in advertising. Julius has been in three major Australian fashion advertising campaign plus an international campaign for eyewear. Catia works tirelessly promoting appearance diversity on social media. 

 (photo courtesy of The Australian Womens Weekly)

Catia has told me about an international initiative called Changing the Face of Beauty - its aim is to showcase appearance diversity in advertising. This year there is a campaign called #imready for #15in2015 - urging 15 retailers to include models with disabilities in 2015. In early January, Changing the Face of Beauty secured 15 retailers committed to appearance diversity in advertising. So good!

I love this campaign. It is is important that children - and adults - with a range of disabilities and facial differences are included in advertising and the media, and it’s equally important that society sees diversity represented. This will help to normalise difference.

Of course I believe this campaign should be a success in Australia too, and Catia (and others) is doing her bit to ensure it takes off through her social media efforts - Starting with Julius. The Australian hashtag is #15in2015AUS. Are you ready to help change the face of advertising?

Catia put me in touch with very lovely, very committed Kate Discroll - the founder of Changing the Face of Beauty, and she’s written a guest post about the initiative. This is my favourite line: 

"I believe that media representation equals employment opportunities for people living with disabilities."

Meet Katie (pictured here with daughter Gracie).

(photo from Katie's personal Facebook page)

"Changing the Face of Beauty started 3 years ago. It was a conversation between 2 friends Steve English and myself, both of us parents of a child with a disability. We were aware of the lack of imagery and representation in the media and advertising of people living with differences and we wanted something different, we wanted our children to feel valued and accepted in the world we live in. We both felt the media could make that happen quickly. Since I had picked up a camera it made it easy to start showing what was possible to others and that is what we did.



I believe there has been some positive changes in the media here in America. We have a couple shows that now include actors with disabilities. We also have 2 major retailers Target and Nordstrom that include models with disabilities on a regular basis. Although these are all positives I can not get past the fact that my daughter is part of the largest minority in the world and yet the least represented in the media and advertising. It just does not make sense to me.

Changing the Face of Beauty is a conversation and a campaign encouraging companies to include models with disabilities as well as celebrating the companies that do already. Our goals have changes quite a bit since we launched this. The goal now is to show companies what it looks like to have diverse advertising imagery. I regularly hold photoshoots with models of all abilities and create images that show diversity as well as push social media conversations like #imready for #15in2015 . I hope to give a voice to those who are living with a disabilities as well as to the people who question why the community of people with disabilities is not represented. My hope was to influence companies to make the change. Advertisers want to follow trends. They want to meet the needs of their consumers. My thought is if their consumers were asking for change they just might listen.


I absolutely believe adults should be represented [in Changing the Face of Beauty]. The campaign started out with children only because I am a mom of 6 young children, It was easy for me to find other children. Changing the Face of Beauty is about encouraging the representation of all people living with a difference regardless of age.


I believe that media representation equals employment opportunities for people living with disabilities. My daughter was born 5 years ago with Down syndrome. Right now in the United States there is virtually no employment opportunities. Adults with Down syndrome as well as many other disabilities resort to long days at home with their parents with little or nothing to do. I don't want that for my daughter or for anyone else for that matter. I believe the more our society is exposed to all types of people the more opportunities there will be out in the community and that includes employment. The future is being molded right now by imagery. The future CEOs are googling and keeping in touch on social media. I want imagery out there that shows them that diversity includes people with disabilities. I want their eyes to see differences regularly so they are not such a shock when they are exposed to people who might be different then they are in person. These images promote conversation and understanding both of those things are vital to the future of real change and inclusion in our world.


Changing the Face of Beauty is solely supported by my husband and I as well as amazing people and organizations who step in and offer to spread that message. I am always brainstorming with interested people on how we might collaborate to make the biggest impact possible, but the strongest form of support comes from conversation. By talking about expectations of the media and advertising promotes the opportunity of influencing perceptions. I encourage everyone to talk to anyone that will listen about the lack of representation of people living with disabilities in our world. Usually there is someone in every conversation who knows someone else that can really make a profound impact on that issue. The more people talking the bigger opportunity for change."

How can you get involved:

Write to your favourite retailer.
"Hey (your favourite retailer) #IMREADY for change. We want YOU to include models with disabilities in 2015. We want YOU to be part of the #15in2015 . 15 retailers including models with disabilities in 2015. We know you see us. Represent us.”

Follow and talk about the campaign on Social Media.


#15in2015
#ImReadyAUS for #15in2015AUS
#‎ImreadyUK‬ for‪ #‎15in2015UK‬

Changing the Face of Beauty website


(All photos used with permission.)

09 January 2015

Blogging about disability - a chat on No Limits, Channel 31

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

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



You can watch the show on Channel 31's catch up TV here. (I am hoping to get a copy to embed soon, and I apologise if this link expires unexpectedly - I don't know how long the episodes are online for.)

It's incredibly important that people with disabilities have a voice, and blogging is a great way to allow this. Community TV is a great way too. Did you see my post featuring links to 50+ bloggers who write about disability in December?

Please let me know if you have a disability and are interested in starting a blog, or would like to know how to promote your writing further. As mentioned earlier in the week, I am developing a blogging course to be released this year.

07 January 2015

You want to become a published writer? Start a blog.



Friends, if you're wanting to become a published writer, I highly recommend starting a blog (and promote your blog on social media). I know I bang on about blogging so much, but it really is a gateway to getting wider exposure.

Blogging is a great way to get practice, to show commitment to a task, to show that you can meet a deadline (even self imposed) and to show that you can handle criticism. Promoting it on social media might just get the attention of an editor who might want to republish and pay you for your awesome writing! Or a company might like your writing style and content so much they might ask you to work with you in a different way! Blogging gives you an awesome portfolio of work to show people you'd like to work with.

If you get confident and pitch to an editor, your pitch doesn't have to be complicated - just:


"Hi, I wrote this about this issue/person/fun thing. Would you like to publish it on your awesome website? I think it suits your publication because... I could edit it so it looks like this. Thanks so much!"
You could even catch the attention of an editor by tweeting their publication, or using some clever hashtags.

(I took a course through the Australian Writers Centre, it was Magazine Writing and Pitching (as a prize from being named a finalist in the Best Australian Blogs Competition), and I can't recommend this highly enough! The Facebook group for graduates is SO supportive and people share lots of valuable information!)

And if you need to get some confidence pitching to editors, start by pitching to other bloggers, asking if you can guest post on their blog! Guest posting is a great way to reach a new audience and build communities.

Even if you don't want to become a published writer, blogging is such a good way to keep a record of your life and to meet new friends. Blogging is also a great way to get to know yourself through writing, and see how far you've grown.

Go forth and blog! But don't just start a blog. Keep going. Keep at it. Good luck!

(Monday's blog post was picked up by an editor and was republished on Daily Life. Look at this wonderful conversation!)



For advice about starting a blog, click here.

I am developing a blog course to be released this year. If there's anything you'd like to know about blogging, please let me know in the comments and it might be something I include in the course!








05 January 2015

2015 - the year of no apologies about my skin and cream.


2015 will be the year of no apologies about my skin and cream. That's my resolution.
For years - almost my whole life - I’ve apologised about my skin interfering with others. And now I will stop.

The need to apologise has stemmed from others being outwardly inconvenienced by it - vacuuming where I’ve walked, wiping surfaces down after I’ve touched them and not feeling as though they could kiss or hug me because they don’t want to get me on them. I often apologise because I get cold when the air conditioner is on, or if I can’t sit outside because it’s too hot or people are smoking around me. And sometimes I get looks as though I am being a princess, so sometimes I just put up with the discomfort. I apologise for my needs, and for inconveniencing others.

I spend a lot of time wiping up after myself. It’s a little about etiquette and leaving things nice for others, but a lot about apologies. I see how gingerly people touch things that I touch, I’ve heard them complain, and I want to avoid that. Years ago, when I was at primary school, Mum used to give a woman a lift to work. She complained because the seatbelt - that absorbed my cream - left a mark on her top. Mum was upset and probably even angry, and the lady stopped getting a lift. I worry about the impact of parents complaining and resenting the cream that their kids with Ichthyosis have to use.

I worry about them writing about it on social media - commenting about how it soaks through their clothes and gets on furniture. These comments are there for everyone to see, to form an opinion about. And I get how Ichthyosis has turned their lives upside down. But these kids may feel like they have to apologise for a medical treatment that they use to stay alive. Comments and actions from others when I was a child have stuck with me. And these comments weren’t on social media, these comments were spoken, so they could evaporate. But they never evaporated and I remember them decades later. They still hurt.

The need to stop apologising for my skin and cream came to me with a bang at Stella Young’s memorial. That lady has taught us so much in her life and death - a big reminder for us that we get proud by practicing. I met Stella’s family for the first time that day. At the end of the memorial, I hugged Stella's sister. She was wearing a gorgeous pink blazer, and I left a face imprint on the side of it. My cream darkened the fabric. I apologised to her, and she said “don’t worry about it, I’ve probably got my own makeup on it anyway”. And then I felt so stupid. Because Stella - her sister - never apologised for getting in the way. In a letter to her 80 year old self, she wrote:
"I stopped unconsciously apologising for taking up space. I'm sure you can scarcely imagine that now; a world where disabled people, women in particular, are made to feel like we're not really entitled to inhabit public spaces."
If Stella’s sister is reading this, I want to retract that apology. I am not sorry for getting my cream on your blazer. I am not sorry because Stella stopped apologising years ago, and so will I.

And I retract all of the other apologies I’ve made - because my needs do not inconvenience you. It is your attitudes that constrain us. Those who really know me, who really love me - they don’t care whether I leave cream on their clothing or make their floor oily from where I've walked. And those who feel inconvenienced, well, they don’t matter.

And it’s not as though I make a mess purposely. I take good care.

And my love, he keeps reminding me not to apologise. 

When we stayed at my parents’ house - one with tiled floors to help prevent allergies - Adam showed me his socks. The sock soles were thick with my skin.

I said sorry, and he shook his head.

“No sorries” he told me, waving his hands to suggest the conversation was finished.

“Stop apologising for what you can’t control.” And I loved him so hard.

I am not apologising for my skin and cream in 2015 and all the years after that. And you shouldn't apologise for your skin or cream or whatever else makes you different either.

02 January 2015

You are invited to the Australian Ichthyosis Meet - May 2015



When I was a child, I hadn't met anyone else with Ichthyosis. I thought I was all alone. Since I have been blogging, I've come to meet many, many people with Ichthyosis - many overseas and a few in Australia. And it's been wonderful. We've been able to share advice, lean on each other in times of difficulties, and offer hope and happiness to individuals and families. We also share common interests outside of our Ichthyosis. I've had wonderful experiences meeting these patients and their families.
Carly Findlay with Children affected by Ichthyosis
And I wanted to give this same opportunity to Australians (and anyone who wants to travel to Australia). This idea came to me when I was at Problogger - I wondered how I could organise a meet for my blog community in real life. I am so excited that this is happening!

About the meet:
I've partnered with the Genetic Support Network of Victoria (GSNV) to host the first official Australian Ichthyosis Meet – scheduled in Melbourne for Saturday 9 May 2015 in Melbourne, as a part of Ichthyosis Awareness Month. This event will give adults, children and families affected by Ichthyosis the chance to meet others with this rare condition. I hope some strong friendships will form, as well boosting the self confidence of all attendees. And the event will also be showcased on my blog for Ichthyosis Awareness Month.

The day will feature three sessions: an informal meet and greet, a trip to the zoo, and a dinner for those who want to socialise further. Two dermatologists have been confirmed to attend the morning session – Professor Ingrid Winship and Dr David Orchard. A photographer will be present to capture happy memories of the day.



Registration
You can register to attend via EventBrite. Registrations close 1 May 2015. The morning session is free to attend, however there may be a partial or full cost to attend the zoo. 
Fundraising
I am doing some fundraising for the event, to cover the cost of the GSNV staff and photographer, catering and to reduce zoo admission costs and transport for attendees. Any remaning funds will be donated to the Foundation for Ichthyosis and Related Skin Types (FIRST). FIRST supports patients and families affected by Ichthyosis worldwide, as well as funds research into the condition.

If you would like to contribute to the fundraising for the event, or know someone who might, donate via gofundme.com/ausichthymeet.

If you attend, you will need to pay for your own transport and accommodation to and in Melbourne, plus the cost of meals and souvenirs at the zoo.

Contact the organiser with questions:
Email Carly Findlay at ausichthyosismeet@gmail.com
Thank you for helping to make this event a success. I appreciate your involvement. 

28 December 2014

Pop quiz.

A couple of weeks ago, I went to a little online Christmas party in the Blog with Pip Facebook group. I wore my pyjamas and drank a glass of wine. Pip very cleverly got the discussion happening by asking us all some questions about what we did in 2014. It was wonderful to see how confidence, friendship and skills have been built. Everyone in that course is so supportive, encouraging and congratulatory. And at the end of the party, Pip said that now we've answered the questions at the party, we might like to share our reflections on our blogs.

I know I've just done a recap post, but I liked recalling the year that was this way because it got me thinking about what I want to do next, and reminded me of all the people whose blogs I've read through the year. I've linked to the bloggers' Facebook pages, please pop over and say hello! (Also, while I am on holidays and not blogging as much, I'm sharing lots of pictures on Instagram. Come say hello!

Question One
Who are some people who inspired you in 2014? 

1) Stella Young, as she changed the world. 2) Pip Lincolne because she does heaps of amazing, creative, inclusive things. 3) my friend Camille from CurlyPops blog because this year she has packed so much into her life after her double lung transplant last year. 4) all of you bloggers, new and experienced, because you are brave enough to put yourself out there.

Question Two
Which blogs have you discovered or continued to enjoy this year?

Sarah's Heart Writes and I Give You The Verbs and Mama Nourish and Edenland and The Chronic Ills of Rach and Life At My Level and Living With Bob (Dysautonomia) and Carly-Jay Metcalfe From the top of my lungs: living with Cystic Fibrosis and MeetMe AtMikes and Stream of Caitlinness

Question Three
Did you achieve something this year that surprised you? (In any area of your life?) Care to share? A few things are fine too! Go you!

I got engaged! That surprised me! And I was named in Australia's 100 Women of Influence - another great surprise. The biggest surprise growth I guess is that I walked out of a toxic situation and created a better one for myself.

Question Four
Share some things you tried for the first time?!

Living with another person. Geez. The arguments we have over the housework! But it's also wonderful and he's there when I wake up and when I go to sleep. 

Also, I know how to use Photoshop because of my day job - I used that properly for the first time. Only basics, but I can do it! And I used Canva! I made this!




Question Five
What was the best thing you saw or heard?

Darren Hayes' voice at the end of my phone line. Hands down. I GOT TO TALK TO HIM ON THE PHONE!!!!!!!!!!!!!

Also, I loved watching Gone Girl even though it was gory. And I loved reading The Fault in Our Stars. I loved Lorde's album. And I loved seeing photos of Adam hanging out with my Dad making model trains when I was overseas. 

Question Six
Name 3 things you didn’t get to do this year that you want to tackle next year?

Redesign my blog. Create an ebook/course. Start my memoir manuscript. 

Question Seven
If you could steal ONE QUALITY from another person, what and who would it be?

I’d steal Pip’s quality of getting up earlier - to exercise, to write more...

Question Eight
Which bit of YOURSELF were you most proud of this year? 

My writing, my confidence and my ability to never compromise who I am. I declined an award because it would have been unethical to accept it. I don't know if any of the other winners did, but I am glad I did.

Question Nine
Which skill do you most want to improve/acquire next year?

I want to get skills to improve the visual bits of my blog, and make time to write other stuff.

Question TEN
Best thing about this year? Most looked forward to thing about NEXT year?

This year has been amazing! engagement, travel, heaps of speaking opportunities, awards, great friends, great day job. next year I am looking forward to wedding planning and broadening my own business.



Maybe you want to do the quiz too?! Feel free to do it in the comments, or in a blog post of your own! Hope you're having a good holiday!

23 December 2014

2014 - the best year of my life.

I write this with a heavy heart, and also a sense of relief and huge accomplishment. And a huge smile.

I finished my day job for the year this afternoon. No more work until 5 January - and boy do I need the break. But I finished my day job this afternoon - my dream job, for now. I couldn’t leave without crying - again. I will miss them.

I left with a clear vision of what I want to do with my writing, speaking and appearance activism. And that’s comforting given the unknown of my day job that I commence next year. I am someone who needs certainty. And I am also someone who needs to make my own destiny. So I will. I have a blogging course to create, plus a meet up for Ichthyosis patients and families to organise. And that is just the beginning.

I’ve been reflecting on all the things I’ve done this year. It’s been huge. Busy. Twitter's asked us to describe 2014 in five words. Best year of my life. I’ve achieved so much, found my place in this world, have amazing friends around me, and have the love from a man who is one in a million. I have also taken 27 plane trips.

It hasn’t been without its challenges though - I’ve lost friends through broken friendships and death, walked away from a tough situation and been privy to thoughts and assumptions about me that I never thought I’d hear. I’ve also been extremely sore most months and put on a little weight because I haven’t been able to go to the gym. Still, happiness has triumphed.

Thank you to everyone who has helped me along the way - who has read my writing, sent me an email, commissioned me to write, booked me to speak, written me a reference, acknowledged me for an award, sought my advice and experience paid me and thanked me. Thank you.

Here’s what’s happened this year. Can I just add - I did ALL of this on top of my full time job.

January

January was hot. I can’t recall too much more, but I know it was hot. I was interviewed by SBS’s The Feed about the Reddit experience. You can watch that here.

February

In February, I was chosen in the Guardian's Diverse Writers program - where 15 or so writers from diverse backgrounds met with editors from The Guardian to work on pitching. If I am honest, I don’t know whether I accomplished a lot with my paid writing since, but I did have this article about Reddit published on The Guardian shortly after.

I also went to the homecoming of Samuel Johnson from Love Your Sister - it was so lovely to be a part of this event. Connie wrote an amazing testimony for me which I shared at Problogger, and I later met up with her in the Canberra airport.


Adam whisked me away for Valentines Day - we went to a beachside town where we ate expensive seafood and saw koalas in the rainforest.

My online friend, Charlotte Dawson passed away. While I didn’t meet her in person, we talked a lot on Twitter and I was shocked and saddened to hear about her death. I wrote a tribute here.

March 

March was maybe the most milestone-laid month of the year!

I spoke to Darren Hayes on his podcast, got engaged and went overseas for almost seven weeks (without my fiancĂ© - quite a hard time to be without each other).


April

I spent April traveling in America and Europe - met some amazing people including many from the Ichthyosis community. I saw my good friend Rick Guidotti - he took some pictures of me and we did a video interview.

I ate a lot. Especially in Europe. And I went to the Louvre and Disneyland. I feel like I have lots more from my trip to write about.


I also wrote a story about our engagement for New Idea magazine - I wrote this in third person, in the plane at around 6.00 am from San Fran to Chicago.



While in Paris, I woke up to the news that I was a finalist in the Australian Writers Centre’s Best Blogs competition yet again. Again, a lovely honour.

May

I spent half of May in the UK - staying with friends, family and in hotels and hostels. I loved Scotland the most. I got really sick and a bit homesick, and by the end of it, I was glad to get home.

May was Ichthyosis Awareness Month - and I shared 39 stories from people affected by the condition on my blog. So proud and privileged to be able to do this - and especially so thankful for people trusting me to share their stories. Though it was super busy with travelling and editing and scheduling the posts plus the social media while I was traveling. I spent so much time working on my blog in my hotel in Milan in late April that the concierge felt sorry for me not seeing the sites and gave me the internet for free!


When I returned from overseas, Adam moved in! That’s been a big adjustment for both of us, but it’s been most wonderful to have each other.

I also taught two blogging classes at the Emerging Writers Festival for Writers Victoria and Arts Access Victoria (and I'm developing a course from this), and I lectured at Melbourne University.

June

I bought my wedding dress in June - I was so lucky that my Mum was there to experience this moment with me. We both got teary.

I hosted a Literary Salon at the Emerging Writers Festival - gosh this was fun, and so moving to hear five writers with disabilities read their work.


The taxi driver discrimination of last year had a happy-ish ending - a training video was developed for taxi drivers.

I wrote about Turia Pitt for Daily Life.

And I protested outside the ABC studios to Save Ramp Up - I am quite proud of this screen shot from SBS news!

I also wrote my final piece for ABC Ramp Up - see that on my blog here.


July

In July, I spent some time in hospital. I was so very sore, and it took me weeks, if not months to recover.

August

Most of August was spent resting and recovering and preparing for some busy times ahead. I spoke at the Melbourne Writers Festival - on a panel of young memoir writers.


I also spoke about social good at the Problogger Event
 - with Emma Stirling, Eden Riley and Stephen from World Vision.

I came back exhilarated but feeling burnt out by blogging.

September

September was when it started to get busy again. I completed the Blog With Pip course - which reinvigorated my passion for blogging, especially the community aspect.

I also spoke at the ComCare conference (a little about having Ichthyosis and working full time) and at the Scar Project’s On Beauty panel in Sydney.



I met Ariana Huffington (disappointed she doesn’t pay bloggers) and also some lovely women at the Business Chicks event, including Helen Kapalos from Channel Seven, and another wonderful woman who gave me flowers in the street.

And I was a guest at the Girls on Film Festival where I was inspired to write this post about appearance diversity.

October

In October I was named as one of Australia's Most Influential Women in the Westpac and Australian Financial Review 100 Women of Influence. Talk about amazing! I went along to the ball, dressed by Cue.


I also performed in Quippings at the Melbourne Fringe Festival - so much fun.

Before Fringe, I met my lovely sister-in-law for the first time!

I spoke on a panel about blogging for social good at the Cancer Council, and another panel at the Changemaker Festival.

And I was featured in the Daily Mail  - my thoughts on scary face at halloween.

November

November is where it became so busy that it was a blur. I traveled to Sydney and to Canberra.
I wrote this piece on not taking it gracefully on my blog.

I wrote this piece on being engaged for Mamamia.

I went back into the No Limits studios to do an episode on blogging with Michelle, Hayley and Leisa.

I won a Yooralla Media Award - then declined in on ethical grounds.

And I was published in Peppermint Magazine.

December

I traveled to Sydney again and spoke at the Australian Network on Disability cocktail event.


I met the amazing Graeme Innes there.


I wrote about the state and importance of disability media in Australia and called for independent media awards. I also pledged to Stella Young that I will be key in ensuring disability media continues and is recognised.

It was my birthday and Jason made me an amazing cake!


I went back to Albury and gave a speech to my high school and was inducted into the hall of fame.


And Adam and I set a wedding date - #CarlyHeartsAdam. So in love.

And that’s it - 161 blog posts in 2014, so much has happened. The best year of my life. But also, the most difficult for so many.

How’s your year been? Any goals for next year?

This is my last post for the year - I think. I will draw the prize winners of my giant giveaway on my break. The entries have been so lovely - thank you!

Have a happy and safe Christmas and new year. Talk soon.

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