31 December 2015

This New Year's Eve, don't beat yourself up for what you haven't achieved - feel good about what you have achieved.

As the sun sets on the year that's past, especially, there are so many voices telling us that what we're doing isn't enough. I've found this particularly as blogger - not even in December, but all year actually.

In a world where everyone is a diet expert and there are people who call themselves social media gurus but only have a handful of social media followers, it feels like bloggers should be diversifying and value adding, or sink. Maintain your blog but DO MORE to connect with your readers, to reach brands and to boost your SEO. Write a listicle post! Use long tailed keywords! Don't write a long post as your readers won't like it! Become niche! It can be overwhelming. And can leave you feeling like you're not doing it right. (Just quietly, I don't know what a long tailed keyword is, nor am I aware if I've used one, and I'm doing ok!)

As I downloaded yet another interesting podcast, this time about entrepreneurship (it's called Design Life - with episodes about personal branding and side projects), I realised that this year, many things didn't get ticked off my to do list. I sighed, wondering when I will do these things:

  • Complete my huge writing list
  • Start a HuffPo profile
  • Finalise a writing challenge I have planned for the disability blogging community
  • Write a short eBook
  • Launch a blogging eCourse (I delivered a mini one last year)
  • Start a podcast
  • Complete start my manuscript and refine my manuscript proposal
  • Do more videos
  • Pretty up my blog.

It's perfectly fine that I didn't achieve it all. Because what I did achieve in 2015 was huge.

Everything on my to do list is part of my side project. My side project is mostly my writing, which leads to other great things. While I had lofty goals to make it my full time job, I'm not sure that's feasible. My side project makes me very happy (mostly) but it doesn't make me a full time wage. It does supplement my income very nicely and also lets me develop and build on skills, plus meet fabulous people.

As we say hello to a new year, there can be pressure to change, to do things differently. Do more, be better, overhaul yourself, your diet and your career. But why can't what you've done be enough? It's enough for me. And I won't feel guilty for not doing more or being different to what I am.

In 2016 I have no goals. I will just keep writing, keep honing my craft. And I believe that will help me achieve those other goals I didn't tick off my list. I will chip away, continuing to find happiness and help people in my side project.

I wish the same for you. Don't change because someone's telling you to. Don't do something at such force it's no longer fun. Don't beat yourself up for what you haven't achieved - feel good about what you have achieved. Keep doing what you love. Keep being you, because you're great. And if you want to make a change to your life or set a big goal, do it because of your own reasons, not because you felt pressured into it.

Happy new year.






27 December 2015

A handmade quilt for Christmas.

Mum made Adam and I a quilt for Christmas. It was the best present - a labour of love. So many hours of work went into this.

Look how proud she is!

She spent many years making it - I remember seeing the fabric when my grandmother was still alive.

I love it and I love her for making it. It's a gift I'll treasure always. Thanks Mum!

24 December 2015

The problems with The Mighty, and my suggestions for improvement.

My thoughts about disability website The Mighty have been brewing for some time now. I'm overwhelmed with words as I write this piece. But it's time I addressed this. It's a long post, but I've done my best to clarify my feelings and do some research to back up my claims.

This week, The Mighty published a post which was offensive to many - it was about "meltdown bingo" - making fun of people with autism. A petition was started. The editors removed the post and wrote an apology.

That post was the last straw. The Mighty has been problematic to many for a while - with writers expressing their feelings about it this year. Meriah has written her thoughts here ("The Mighty is disability on click bait", she says) and there's also a great post on 21+21+21. Parts of disability community rallied and broadcast our thoughts about the issues with The Mighty this week. You can see them via the Twitter hashtag #CrippingTheMighty, and a summary of blog posts in a link at the end of this post.

Cripping the Mighty is a movement to take back our voice, to show The Mighty editors and readers many diverse, informed, educated and articulate disabled writers, and to voice our concerns about the website. The Mighty then asked for a conversation. Many writers, including Radical Neurosiverse Speaking thought this consultation with the disability community was too little, too late.

I describe The Mighty as a site about disability, which often has a pity/inspiration-porn/parent focused narrative. Cara describes it as "not-news-news". Yes! Alot of the stories are non news about disability. To my knowledge there are no editors with a disability at The Mighty - but founder and CEO Mike Porath has written about his experience as a parent of disabled children here. Many esteemed writers with disabilities and parents contribute to the site. I'm friends with a few of them.

The Mighty had so much promise but many of us feel parents' stories outshine the stories of people with disabilities. As Leah Kelley writes, the voices of parents and professionals often has more reach and volume than those of patients and people with disabilities. It is more so a website about disability, rather than by people with disability. And so often when disabled people write about their experiences, they're shut down by commenters, or diluted by stories about us. In a call to change The Mighty, Savannah Nicole Logsdon-Breakstone wrote "One specific ask is to increase the percentage of disabled writers so that parents are not the primary voice heard on the site."

I've contributed to The Mighty several times. I've not written anything new for them - just republished blog posts, and it's been unpaid, so it's been all about the (small) exposure. I've also said no to them several times, when they've asked me if I would like my posts republished. I've said no because of lack of payment, my feelings about the content as a whole, and also the knowledge that one of the posts they wanted to publish would no doubt be torn to shreds

Why would I write for a site that I don't fully. agree with in parts? (And am I biting the hand that feeds me? No.) Because I wanted to help change the narrative. I wanted to add to disabled voice, which I believe The Mighty has but lacks. I believe that sharing stories helps others feel less alone, and helps them share theirs. And I admit, it's nice to put another website on my portfolio.

My issues with The Mighty can be broken down into themes: the portrayal (and inclusion) of people with disability, oversharing, lack of payment, contributors community, support from editors amd commenters.

The portrayal (and inclusion) of disability

When I first saw a dedicated platform for stories about disability, I was excited. Since the cessation of Ramp Up, a united platform has been missing. Disability is underrepresented in media.mwe need more voices.

I do enjoy some stories on The Mighty, like this one - addressing disability pride and being called an inspiration for just doing ordinary things. This is a good post too - the writer draws attention to the problem of the supercrip.

But overall, The Mighty features inspiration porn, and many stories are of pity and tragedy from a parent's perspective. There is also a tendency to make heroes of people without disabilities who interact with disabled people. The stories are well intentioned, but could be so much better.

The way we are represented impacts on us. It impacts on our job prospects, relationships, media portrayal, financial support and our self esteem. It impacts on everyone with a disability, and everyone without. Here are some examples of problematic posts:

To the Waitress Who Stepped Out Of Her Comfort Zone for My Son (Here, the mother describes a waitress interacting with her son for a minute while she went to the bathroom as "a once in a lifetime experience". How little faith does she have in people?! Does she think that no one will interact 'normally' with her son, like ever?)

Why I'm jealous of kids with cancer (The illness hierarchy is callous)

To the Family at Disney Who Saw My Son in Line to Meet Buzz and Woody (Well intentioned but making an able-bod out to be a hero.)

On how denial is (was) a special needs parent BFF (Why do they skirt around the word disability?)

When a man with special needs surprised my wife in Walmart (Ugh. Disabled man hugs woman in Walmart. So her husband wrote an article about it for The Mighty. Not news.)

19 hilarious food requests autism parents have on Thanksgiving. (Dietary requirements and preferences are mocked.)

Disability is often portrayed as a burden, with non disabled people taking time out of their busy day to interact with disabled people, and parents sharing stories of the difficulties of parenting children with disabilities and illnesses. (See Girraffe Party's excellent post about this issue.)

It's difficult as a disabled adult to read the raw stuff. To read about the real, valid feelings of grief and cures, and also the oversharing photos, is really tough to see. Did my parents feel this way too?I fully endorse with offline spaces for in depth discussion about medical details.

Lei Wiley has written about the problem with the portrayal of disability by parents on The Mighty - she's said it better than I could.

"Many people confuse parent support with disability advocacy. Those are two separate things. This is why sites like The Mighty are so problematic. You can't complain about parenting a disabled child in the same space that you claim to want to uplift and inspire people about disability. The narrative of tragedy surrounding the experience of parenting disabled children has real life consequences for disabled people. If you want to serve our communities, you must not tell our stories without us and with so little respect to us. If you want to help disabled people, learn about ableism, learn about injustice, learn about ways to make the world better, fairer and more inclusive for us."

And S.E Smith also wrote about the issue of The Mighty being a place for parents, specifically how their identities are shaped by their child's diagnosis in this excellent blog post.

Additionally, The Mighty doesn't use alt-text - image descriptions to assist people with various disabilities make sense of pictures. Another way they're excluding people with disabilities. 


Sometimes stories on The Mighty are not the writers' to tell. Like this one: To the Man Who Almost Jumped in Front of the Subway. This is tragedy at the expense of clicks.

However, I also think everyone is entitled to their stories, and a parent's experience is valid and needs to be vocalised too. But never at the expense of dignity or privacy,

I've written a lot about my views on parents oversharing about their children's conditions, but to summarise: for parents blogging/ sharing information/seeking advice about their kids online - my view is, do it but show some caution. If you wouldn't like that written about you online, then don't write about your kids in that way. It's too easy to ask a question in a Facebook group or to put up a photo of a child's rash filled bottom in desperation. Don't share pictures of them in vulnerable situations (naked, in pain, private ones). Keep the privacy and dignity. Blogging creates support and connectedness and is valuable for everyone.

I never want to silence anyone's voices. But if you're "being the voice" of someone else, consider what and how much you share.

Lack of payment

The Mighty contributors do not get paid. People with disabilities have a lower income than those without. Unemployment is high, and opportunities can be low due to low expectations of people with disabilities. Parents who care for their disabled or chronically ill children may not be able to work. Most stories are about lived experience. So contributors should be paid fairly for their contribution.

I was asked to cross post my Mighty articles on Yahoo. I declined, because of the lack of payment for my lived disability experience, writing achievements and qualifications. Yahoo is a huge company and I am not. Its projected earnings in 2015 was $950 million.

(Here is an article about the financial backing for The Mighty - they recently received a grant of $2.5 million)

The Mighty and Yahoo needs to value its contributors more by paying us. Even hire a disabled editor.

The Mighty contributors community

Mighty Writers have access to a closed Mighty Facebook group. Generally the group has been quite supportive and well behaved. It hasn't been pretty over the past few days though, with bickering between parents and adults with disabilities wanting to have their voices heard.

Many were angry about Cripping the Mighty, suggesting it's just a small handful of people with too much time on their hands shouting and spouting hate speech. Some have been extremely aggressive, but others have been lovely, open to different views, assertive about our education and experience, and very supportive.

I feel like some parents and disabled adults are missing our point - some don't think ableism exists, others don't like the term inspiration porn and a few think The Mighty should be segregated between adults with disabilities and caregivers. One writer has told me (outside of the group) she thinks autism and Down syndrome gets too much coverage and rare conditions should get more. There is a definite sense of hierarchy in the writers community.

Many are saying they are the only voice for their child and have a right to share their child's story, not understanding the impacts of oversharing and loss of privacy and dignity. (I was attacked by a Mighty contributor on my personal Facebook page for raising this specific issue. She said I'm not a parent, so can't comment, blah blah. Friends had my back. Thankful.)

I shared a couple of my blog posts and also my point of view on parents blogging about disabilities with the group. They've been welcomed. I got a few lovely comments which have been nice. I've since connected with some lovely people. They've asked me to review their articles - which have been fantastic. Considerate, compassionate and concerned about the portrayal of their children.

A friend with a disability left the group, feeling chased out by angry parents. Another said her anxiety was heightened by the arguments there, and she needed time out. And someone else (a parent, very considerate of how she portrays her child and his autism online) told me she was being called mentally ill in a derogatory way by another parent and has been upset. She told me "I am a stranger [to her] and she has no knowledge of me nor my mental health..this was astonishing and troubling."

You can read more of my experience as a contributor in the group on Disability Voices (log into Facebook to read it).

Today I was warned by The Mighty editor for sharing quotes directed at me, and my own quotes outside of the Facebook group. I will not have my experiences silenced.

Support from the editors

While the editors have tried to foster a community, I am not sure of the level of guidance (if any) they provide their writers. I don't mean editorial guidance, but the emotional support that is so important in handling the feedback that comes with writing online. Years of blogging, and having close support networks has made me fairly resilient. And I hope The Mighty writers have got the same.

In the case of The Mighty's content, it's not the writers we should direct all of our anger at. The writer of the meltdown bingo point might not have made the wisest decision publishing it on such a large reaching website, but they're her thoughts. We should expect more from the editors. I really think vulnerable people (perhaps inexperienced, unprepared writers who have a lot going on with their/their child's illness or disability) who want their stories to be read submit to The Mighty, unaware of the reach and reactions to their articles. Being published (and subsequent fame) is a great achievement and can be addictive. The editors want to curate a certain narrative, and so use clickbait headings and unconsidered content on their site.

The editors might well be throwing inexperienced writers under a bus - intentionally or not. The writer of the bingo post was very upset this week. I wonder if the editors gave her a debriefing or prepared her for a backlash?

From my experience in The Mighty Facebook group these past few days, I'd say the editors haven't given contributors much support. They admitted to it too, in light of the response to meltdown bingo and Cripping the Mighty. They've let attacks happen. So I doubt they prepare contributors for a backlash. That's why I didn't want them to republish my post about parents oversharing. I didn't want to be ripped to shreds for free.

They might be doing their best, but with their resumes (their About Us section says the editors have a background of "The New York Times, ABC News, NBC News, MSNBC, MTV, AOL, The Huffington Post") I'm not sure how equipped they are with guiding more vulnerable writers who focus on disability and chronic illness.


Many commenters on The Mighty posts are either inspired or angry. I believe they too are problematic in relation to the portrayal of disability - mostly due to their low expectations and demands for the disabled writers to be teachable moments.

When an article about a disability centred sex party was published in August, readers were outraged. Readers dismissed the sex lives of disabled people - completely grossed out.

The comments were terrible - they show what I've been thinking for a while - readers lap up inspiration porn and cannot deal with learning about the real lives of people with disabilities. Disabled people have sex too! An example:

"So sad! I'm unfollowing the Mighty now. This is obviously not protecting and advocating for people with disabilities. I've often times been so thrilled to share what you guys post, but am so sad and grossed out. There should be people that love these individuals who teach them about sex, not having a perverted party. I'm so sickened by this. We're supposed to encourage, lift up, help them succeed, and most of all watch out for them. These people are preying on them. If so, I hope justice is served and light is shone on the dark places. Jason, Sandra, please read and share to unlike them. People with disabilities naturally feel hurt and rejected and want to be a part of something fun! If course they'll come to your gross party! I could have a much better party for them."

Karin, who wrote a great piece about not wanting to be called inspirational, was cut down by commenters. "People get angry when disabled people don't want to constantly educate on disability, but don't listen to us when we do #CrippingTheMighty", she tweeted. So true.

It is great this platform dedicated to disability exists, but I think it could be much better. I've got some suggestions for The Mighty, it's contributors and readers, which I hope will be considered. I'm hopeful of a change - I think the editors are listening and some of the parent contributors are really valuing what disabled writers have to say.

To the Mighty editors:

I know you will be reading this. Listen to us.

Pay writers. Support writers in the face of critical comments - arm us with resilience.

Implement a peer review program - as suggested by a contributor. Get an adult with a disability to review a post from a parent when unsure of how it will, be received.

Consider how disability is portrayed, and make disability the centre story (stop praising a person without a disability for being heroic for engaging with a disabled person).

Share inspiring stories but make sure the subjects are actually doing inspiring things, not every day things like getting out of bed.

Consider the impact a story will have on the wider disability community.

Remember the "nothing about us without us" mantra and follow that along with your motto: "We face disability, disease and mental illness together."

To The Mighty contributors:

We aren't the enemy. We aren't spouting hate or silencing you.

I am listening to you, seeing your struggles and admire the great job you're doing.

I understand how uplifting stories inspire you and often give you hope for your children. But please consume the stories about ableism, discrimination and why we don't want to be a teaching moment, too. Not all stories about disability are positive and uplifting, because life with a disability isn't always great.

I ask that you consider the level of detail you share about your child's condition by thinking how you'd like to be written about on the internet. Consider the impact your stories will have on the wider disability community, on your child even. Be mindful of public grief.

Educate yourself on disability rights, acknowledge ableism. Don't dismiss our feelings, take our guidance.

Acknowledge disability pride and instil it in your children.

Your children will be adults with disabilities one day. We were children with disabilities and chronic illnesses once too.

Never dismiss the disability community as whiny, overreactive or having too much time on our hands for speaking up.

And to The Mighty readers (80 million of you!):

Read broadly.

Accept that people with disability lead full lives (even sexual lives) and really put thought into the impacts of your outraged comments.

Learn about disability politics.

Think about why you're inspired by disability, and then raise your expectations of disability.

The disability community is strong, intelligent, articulate, educated and proud. We aren't unknowns who will be blown over. We want to be heard. We will be heard.

We can work together.

For a comprehensive post about Cripping The Mighty, visit Cracked Mirror in Shalott. A Storify of the tweets is here.

What are your thoughts about The Mighty?














It's called love.

Me: brushes my skin out of Adam's hair.

Adam: "Oi!"

Me: "You got some of my skin in your hair."

Adam: "It's called love."

Heart melted.

For years I apologised about my skin getting on others, getting on surfaces. Even though I said I wouldn't, I still do.

Every time I go to toilet at work, I wipe up my skin off the floor. I sweep it up with my tram ticket, like a little mouse sweeping up spilt flour in a little flour mill.

I'm still so self conscious of leaving myself behind.

But this man, he doesn't mind if I leave myself behind on him.

How did I get so lucky? How did something so awkward and intimate not phase this man?

He still says no more sorries. I'm getting there.


22 December 2015

Five Christmas gifts from the heart, not from the wallet.

My family doesn't do a big Christmas. It's always simple presents, good food, and in recent years, a sleep in and then volunteering at a community Christmas. I do love giving gifts, and have chosen some exciting ones for loved ones this year. I can't wait to see reactions as presents are unwrapped on Christmas afternoon.

For me, Christmas is about being with family and friends, laughter and love. And you can give meaningful gifts without breaking the bank. A good Christmas doesn't have to be extravagant. Here are five Christmas gifts from the heart, not (all) from the wallet. I think recipients will love them!

Something handmade.

A pot of jam, some cookies, a knitted scarf, a framed painting, a piece of jewellery, a felted soft toy... Handmade gifts are wonderful and I love them. Pop over to Etsy to support some local makers, or make something yourself to give away. Pip's always got great ideas for handmade goodies too.

A family recipe.

Write down your favourite recipe and give it to a friend or family member. Maybe you can preface it with a little story of your memories of cooking or eating this. You could make it really special by collating a few recipes and using a program like Canva to design a mini cookbook.

I've got great memories of food as I grew up. Mum always made food go a long way - using cheap cuts of meats for stews, making her own pastries and using chilli in almost everything! I really enjoyed her lamb peas and carrots breedie (a South African stew), and want to ask her for the recipe this Christmas, so I can make it myself. Maybe I'll show her how to make something I cook a lot too.

A list of the recipient's achievements to remind them they're spectacular.

Write a letter to a friend or family member, listing their achievements in the past year. Showing them that even the small things they did had an impact will make them smile, I'm sure.

So many people in my life have achieved amazing things this year. I'm especially proud of Adam for starting his handyman business, acquiring many clients and making more money in three months than he thought he would in a year. His drive and commitment to this small business has been incredible. I'm seeing a different person. I want to keep reminding him of his achievements to lift him up. He's done so well.

A packet of seeds or a cutting from your garden.

Give a friend a packet of seeds to plant. During the year, they'll have flowers to admire or vegetables to pick. Or deliver them a cutting from your garden. My Dad has a cactus he got from our neighbour in 1983, and it's still flowering. He continues to give cuttings to his friends.

A good deed for someone in need.

Christmas can be tough for many. Make someone else happy on Christmas Day. Volunteer at a community Christmas, or place a present under the wishing tree. From experience, presents are often lacking for older teenagers - so make sure you think of them too. And a phone call or hug doesn't go astray - let someone know you're thinking of them.

I wrote this for a website a couple of years ago and want to republish it here.

Christmas can be a joyous occasion, abundant with food, presents and loved ones. But for people who have lost family members, who are homeless or experienced a tragedy, Christmas can be a difficult time. It's often not presents that make a difference, but ensuring people in need are given the opportunity to feel included

This Christmas 25,000 Australian families will be homeless. Nearly 30% of The Salvation Army's clients will not have a decent meal on Christmas day and 36% will not have social contact with others in this holiday season. The Salvation Army expects to assist over 100,000 Australians over the festive season - three times the number of people seeking help in December compared to any other month.

"The Salvation Army is doing all it can to bring some comfort and hope to as many people as possible this Christmas," said The Salvation Army's Dr Bruce Redman.

Dr Redman said that it is not just financial support that people need this Christmas. "Over 36 per cent of clients who responded to a survey we did in 2013 said they do not have regular contact with people. Loneliness is amplified over the Christmas season - so social support is just as important as financial support."

My family is small - it's just my parents and I. We've been very fortunate to always have lots of great food and wonderful presents at Christmas - never too lavish, but I've always felt lucky. 2012 was the first Christmas that my parents and I volunteered at a community Christmas event, and we have made this a yearly tradition.

We served a baked lunch and washed dishes at a community Christmas lunch at a Uniting church. The food was by head chefs from the local technical colleges. Each guest received a gift, and most importantly, they got to spend Christmas in company. It was such a happy atmosphere - both in the dining room and our volunteer assembly lines.

Some guests had mental illness, others were in financial distress. I spoke to widows and widowers, and also to a couple who had recently migrated to Australia from Sri Lanka. Some of the volunteers gave been doing these lunches for years, others came for the first time, just like us. I spoke to one young volunteer, in his late teens, who said he has a difficult family life and so volunteering at this event helps him to take his mind off his family on Christmas day.

169 people had a meal and experienced a sense of community because of that Uniting church Christmas lunch, and leftovers were sent to the police cells.

Michelle* from Melbourne said that her son, who has a disability, and husband attended a Christmas event run by Variety a few years ago. "The event included food, drinks, rides and Santa. Variety not only put on the event, but they also provided our son with a large bag full of xmas gifts", Michelle said. "It was wonderful to think that others would want to make our son feel special. It was great to know that there were people in the community that cared and and wanted to create something special for others." Michelle believes that this event was special because of the social inclusion, and because her son's disability was understood. "There was acceptance of disability and difference, and people could have fun without feeling like they were going to be judged for how they looked or behaved", she said

Please consider helping out a family less fortunate than yours this Christmas. You can drop off presents and food to various gift appeals, make a donation to the charity of your choice, or enquire at your local church or community centre about participating in a community Christmas event. Check out the Australian Charities and Not For Profits Commission charity register for a list of registered charities to donate to.

(All statistics provided by The Salvation Army, October 2013

Michelle's name is a pseudonym by request

Image description: two gingerbread men on a wooden board, surrounded by Christmas spices and Christmas tree leaves).

21 December 2015

It's ok to do nothing.

It's ok to do nothing. I've given myself permission to do nothing this weekend. The weather has had an influence too. It's been too hard for me to do anything over this hot weekend. (And I've felt a little guilty doing nothing while Adam has been outside working hard the whole weekend.) I had intentions to do things - really, I did.

I'd planned to write - to finish all the drafts I have. I'd planned to source a frame for our wedding, so I could paint it and insert table places in the windows. I'd planned to tackle the mountainous bedrobe in the spare room. I'd planned to go to a store and buy a gift voucher - but instead I thanked the retail gods for allowing me to purchase it online. Instead, I organised the saucepan cupboard - retiring my old ones and washing my new fancy ones, did lots of washing and danced around the house in my swimmers, singing loudly to Taylor Swift.

I watched some Netflix too - indulging in some rubbish (Rock This Boat - a hilarious reality TV series about a New Kids on the Block boat cruise and their 3000 screaming 30 something fans), and some healthier stuff (Master of None - an insight into the lives of contemporary 30 somethings - so clever.) I sprawled out under the air conditioner - bliss.

I don't do nothing well. I have to be doing something! My version of doing nothing is often lying in bed bashing out pieces of writing, or listening to podcasts when I really should be asleep. Even in hospital I feel like I should be using the time to read a book or a magazine.

Adam and I played a mind game at the science museum last year - it showed how much we use our minds. The ball would move when we relaxed our minds, and stay still when our minds were busy. Adam found it easy to move the ball. I couldn't make the ball move as I was thinking of dinner, writing, the heat, my body, work.... I can't switch off.

This year has been a busy one. Exhausting even. I've taken two weeks of recreation leave, a few sick day, no break between my old job and new one and my travel to Sydney and the Gold Coast have been for speaking and blogging engagements - while feeling like I was on holiday, I was still "on". I think planning the Australian Ichthyosis meet and then running the guest posts for Ichthyosis Awareness Month in May left me feeling spent. I have those projects my all, and while the outcome was so wonderful, I might have suffered planning withdrawals and also sheer exhaustion. And wedding planning has been busier than expected - I'm relieved I am not going overboard with the details. And there's been the normal routine, too. Seeing friends, meeting deadlines, visiting shopping centres, paying bills, cooking meals. Rinse and repeat.

I just needed to stop.

The busy epidemic is real. Colour Me Anna says

"There are two types of busy in my book. The busyness of life that is very real…school routines, after school activities, social lives, exercise and generally exhausting household chores. Then there is the busyness inside your head. This to me is the greatest concern. If you can’t empty your head of the busy then you will never unbusy yourself. Unbusy is totally a word, okay?"

She's right. It's been nice to unbusy myself - my head - by taking time to do nothing. I go on leave soon - and I hope to be relaxed going into the break, rather than taking the whole break to unwind.

It's ok to do nothing sometimes. Our bodies and minds are better for it.

How about you? Are you in a constant state of busy? How do you slow down?


16 December 2015

Today my blog is six!


My Facebook memories reminded me that today my little blog turns six years old! Six!

I know I haven't written much lately. I want to, and it's so easy not to. It's been very busy. But also I have a lot to say and I am mindful of not saying it all, all the time. I don't want to always be the voice, or seem angry at everything (because I'm not). I've always got drafts on the go, though. And I've got some time over the Christmas break to write.

Thank you to everyone who has read, commented and shared my writing. Thank you to the editors who have commissioned my writing - especially to the ones who love what they've seen on my blog and want to republish (and pay me!) on news sites. To those who have asked me to speak and teach because of my blog - I am so grateful for these opportunities. Thanks to those of you who contributed to guest posts. And thank you to the countless people who have written to me to tell me your stories - what a privilege it is to come to know you this way.

You all know so much about me. You've seen me grow up, make mistakes, come to know myself and find love. And you've given me so much support - always. Plus I've learnt so much through writing and researching. Sometimes my blog posts aren't the quality I'd like them to be, but for the most part, I'm very proud of the writing here. My voice has become stronger and I'm mucH more confident to voice my opinions. A lovely Bloggy birthday present is being named in one of Daily Life's top 20 stories of 2015. That story was originally a blog post.

I love that something I'm so passionate about, and constantly practice, has made a difference to many people. Because of blogging, my life is richer.

Thank you, I love you!


14 December 2015

My very own Instagram Husband

Have you seen the very funny Instagram Husband video?

Adam sent it to me - he loves it and so do I!

One of the few reasons Adam and I argue is over taking Instagram photos. I'm a little bossy, you see.

"Please use my proper camera."

"I like this wall, that one is too dirty."

"Can you please take a photo of what wore to work? I really like it!"

"Don't reveal where we live."

"Please take more than three photos."

"Not yet, I'm not ready."

"Is my dress too short?" (To which he replies, "not short enough".)

"Have you sent the photos yet?"

And so on.

My love, he's so patient. So obliging. And I'm sure, like in the video, his phone is filled with photos of me.

He understands. This isn't vanity. This is what I do. He's ok with it. Even with the eye rolls.

Sometimes he will take photos when I'm not looking. Really unflattering ones. Ones when I am lying on the couch with my pyjamas on, floppy boobs and messy hair. He said he thinks I'm still beautiful.

Occasionally he'll send me one of the unflattering photos and I screech "when did you take that?". He tells me he snapped it when I wasn't looking, or when I was moving. Like this one (one of the more flattering ones).
Most of the time he takes photos on the run, and tells me to hurry up, we are late! I pile him with stuff I don't want in the photo. My bag...my sunglasses... He snaps anyway. He said he liked this action shot.

We get it right, and I post the photos once he's messaged them to me. He always takes them on his phone as mine gets Vaseline lens. Here are two successful ones.

He told me he's not one for photos. But then he sneaks into selfies. Like this. Cute!

Have you got an Instagram Husband or Wife? A selfie stick? Is your photographer as patient as mine? (Sorry for the influx of photos of me, too.)

03 December 2015

International Day of People with Disability is more than tokenism.

Today is international Day of People with Disability.

Australians will pin a blue and orange badge on their lapel, to show their support for inclusion and accessibility. Many will attend events (mostly organised by people without disabilities) just for the morning tea. I know - people have told me they only stopped by for the sweets. They'll hear people with disabilities talk, and for the most part, that speech will make a positive impact, perhaps even create meaningful change. Hopefully the speaker will be paid. Some people will feel uncomfortable by disabled people talking about ableism and inaccessibility - they're just attending to hear the Inspirational Stories. Some events will only feature figureheads - people in the disability sector or diversity stream of an organisation - speak about others with disabilities. Disability allies are encouraged to bake muffins, ice them in the themed colours and upload them to social media – to promote inclusion. (A muffin is delicious but it’s a big stretch of the waistline to call it inclusive.) The media will run with only one type of story – the inspirational. And I’m sure there will be silly games simulating having a disability – like sucking on a lollipop to hamper verbal communication.

Nothing about us without us, right?

I've sat through events where all sorts of euphemisms are thrown around - special needs, diffability, differently abled - even on this day, people (including those with disabilities) with are uncomfortable about the word disability. There's a great lack of pride in some pockets. There is surprise that disabled people are proud.

Sam Connor, disability activist feels the same as I do.

"This day is supposed to be about us. Instead, it's become about 'awareness' and everyone else - the congregate settings we are forced within, the industry called Disability Inc, Sam says.

"We don't need people to become more aware of us. We are here, claiming our spaces. We need the rest of the world to focus on how they're going to change to allow that to happen, to give us jobs, to help us uphold our human rights. And most of all, the day should be about Pride, disability Pride.

Until that happens, it is not our Day."

Sam and a dedicated team of activists have been doing important work in uncovering abuse in institutional and domestic care, ensuring the deceased and survivors are named and known via the White Flower Memorial. The White Flower Memorial website states "we collectively throw a spotlight on murder, violence, neglect and other practices which devalue the lives of all of us. We assert the right to life and dignity of the person under article 10 of the UN Convention on the Rights of People with Disability." This event, held last week, was far from the warm fuzzy morning tea people want and expect. The stories of the deceased are a sobering reminder that it’s not enough just to raise awareness one day a year.

Last year I gave a speech and was spoken over by a man who told me how he thinks I should feel. He told me how negative I was through the speech, and how important it is to be mainstream rather than marginalised (pitied rather than proud, perhaps?). He also told me that he feels the need to give me this feedback as a speech should go two ways. And to top it off, he made a rather indecent comparison to lewd criminal behaviour when empathising with what it's like to have a disability. I was taken aback by his response. I answered on my feet, to the whole audience. I said something like: "I think there is a perception that activists are negative when they share their and others' reality. The things I talked about happened to me. The statistics I quoted are real. I'm not going to gloss over them." This invalidation and speaking over me has happened a few times since that speech. (I haven’t inspired them enough.)

Fortunately I've been in and organised great events - sourcing speakers and speaking myself. Just this week, I spoke at a corporate event, listening to a proud Deaf man who spoke of the joy of being a part of the Deaf community, and an autistic man who's relieved he’s recently been diagnosed. I learnt so much about their communication styles and the reasonable adjustment they need to be the best workers they can be.

And tonight I'm doing a comedy piece in Quippings - a disability-led performance troupe. We are risky, sexy, funny and proud. And we are addressing real issues, making positive, inclusive change. This is how it should be.

This International Day of People with Disability, I hope for more than awareness raising and tokenism. I hope individuals and companies take committed action to tangibly improve the lives of people with disabilities. Don't just wear the pin today and do nothing for the other 364 days of the year.

Increase employment opportunities.

Prevent violence towards the disabled. Call out ableism, inspiration porn and unconscious bias.

Truly engage with the disability community when making decisions about us and planning events for us.

Ensure people with lived disability experience are named Disability Champions, not those without.

Listen to us when we highlight injustices. Really listen and don't speak over us.

Get us to tell stories instead of telling them about us.

Increase funding to disability services.

Provide the right support for families and schools to cope rather than resorting to restraint, segregation and even murder.

Ensure we are paid fairly. Follow reporting guidelines when covering disability in the media.

Ensure your events are accessible – physically, communicatively and attitudinally. See our Pride.

Make this day about us.

A version of this was published on Daily Life.



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