An open letter to The Mighty: being mighty outspoken means getting mightily shut out.

If you read and share content from the disability website The Mighty, what you're about to read here might make you rethink that.

The Mighty editors have removed many of the disability self advocates (and non disabled advocates) from the very community they're trying to serve.

You might be aware of the issues myself and many other disability advocates have with The Mighty. I wrote about the problems with the site and my suggestions in late December.

Since then, the editors have continued to ask for our feedback and said they'll take it on board. A number of us have provided advice on accessibility, payment for writers, language and content to both the site's editors and writers. The atmosphere in their dedicated Facebook writers group got very nasty, and on Friday afternoon (which was Thursday night/midnight US time), many of us (People with disabilities and those without) were removed from the group - with no warning and a very poor explanation following our removal. I was removed a few minutes after I called out the bullying of another writer. His actual words: "I thought you were able-bodied and just acting like you were disabled."

Their reason for our removal: "to return Mighty Voices to what it was designed to be. For this reason, we are removing anyone who hasn't submitted a story for consideration on The Mighty in the last four months." Interesting timing, hey?! They handled that well.

I've considered not blogging about this, but I maintain that it's really important we discuss how people with disability are included and represented in the media - to show who's doing it right and also who gets it wrong. (To help get it right. Alice Wong, Elizabeth Jackson and R Larkin Taylor-Parker have developed an excellent pledge for media outlets and writers to eliminate inspiration porn.) As Cara Leibowitz said today, the fallout from The Mighty and some of its writers makes me "sorry that actual disabled people had the nerve to critique a disability-related site." It's been a mighty mess.

Here is my feedback to the editors - I sent them this email.

Hello Vicki and team,

Thank you for your email advising me of removal from The Mighty Voices group. I am both amused and upset.

Your reasoning for our removal seems suspicious. Calculated even. It seems like you’ve removed the ‘problem children’, shaping the Mighty into a twee, parent-centred community, sourcing unpaid, oversharing, demeaning and feel-good stories about disability.

Four months since we’ve contributed is such an arbitrary figure. And is discriminatory to those who take a long time to write because of their disability.

You removed many people at midnight your time. Midnight. Who makes a decision to do that in the middle of the night? I commend you on your around-the-clock dedication to The Mighty.

And almost immediately after I alerted Mike, Megan and Vicki to some overt, incessant bullying by Olympic Dad, as I like to call him, I was removed from the group.

The atmosphere in the Mighty Voices Facebook group has been unsafe for some time now. I’ve been on the receiving end of so many nasty words, and so have many others. There has been poor moderation from your end. Disability (and disability parenting) hierarchy is rife. Contrary to the way Lauren Jordan Swick portrayed the behaviour of disabled advocates in her Washington Post article. I’ve observed name calling, heated arguments, stubbornness and denial of ableism and inspiration porn that's mostly come from parent writers.

If people are more offended by the term inspiration porn than the content of inspiration porn, there's a problem. Inspiration porn objectifies people with disabilities, implying we only exist to inspire and to make others feel good. If they deny ableism exists, and simply "agree to disagree", I envy their privilege.

Many parent writers in the Facebook group cannot see the value of engaging with and truly listening to the perspective of disabled adults. (But fortunately many others can.) They aren’t educating themselves about disability rights, nor dignified ways to tell their child’s story. We aren't saying don't write or share, we are just asking parent writers to consider what and how they write or share. If they wouldn't like something being written about them online, don't write it about their child. Blogging about illness and disability can be so beneficial when it's done mindfully and respectfully. The parent and carer voice is very valuable and necessary, but not at the expense of a child's privacy and dignity. We (the disability community) aren't the enemy. We aren't spouting hate or silencing them. We are speaking up because we are passionate about human rights and equality - isn't that a trait they'd like to see in their child too?

I am really tired of people with disabilities being labelled as victims, bullies and rude when we speak up about our rights. We speak up because we are discriminated against, spoken over when and our voices are so often not the centre of the story (told by others). As many of us have discussed, people with disabilities are portrayed as heroes, burden, tragedies and difficult. This portrayal is also why we speak up – this is one of the reasons Cripping the Mighty was started.

Disability advocates within the group have been patient, answered questions when asked, and provided many resources around ableism, language and inspiration porn. While we might not have contributed to the Mighty site (and you know my reasons for that – I wrote a 3000 word blog) for four months, we’ve certainly contributed a lot of our knowledge, firsthand experience and resources to other members. Many have expressed their gratitude, and continued to ask for advice. We have shown so much grace while others have thrown tantrums and used poo emojis in their arguments.

Many people who have been removed from the group are upset. Some feel you’ve taken away their voice. Some wonder where they will engage with others facing similar challenges. Hell, you met with Cara on Thursday, and removed her on the same day. She offered some great editorial advice to you and then shared it with the writers group. Before she could blink, her post was removed, and then she was removed. This looks unbelievably bad.

One of the best things to come out of this whole sorry mess is the friendships formed – between parents and adults with disabilities. We’ve got each other’s backs. We’ve got to know each other’s stories and really learn and connect. I know Facebook group members are missing a diversity of voices.

Some of my new friends have told me that you’ve introduced new moderation rules for the group – something I think should have been there from the start. But I worry that these moderation rules will mean censorship. Disabled advocates (and moderate parents) will be silenced. The parents who decry "I will write what I want, you can’t stop me" will overrule. And so, oversharing, ableism and heightened stigma around disability will continue.

I don’t think you’re willing to listen. You’ve called for us to reach out and when we have, you’ve shut us out. You continue to publish inspiration porn. You haven’t made the Facebook group safe after many requests from members. Your brief generic responses to our lengthy emails and well researched blogs have been disappointing. And you've removed many passionate voices. We are Mighty Burnt.

I was optimistic that The Mighty would take on a new direction in 2016. Sadly, I don’t think that will happen. I see more of a focus on click-bait, heated arguments and disability hierarchy than progressing disability centred media.

It's sad that you've let go of some amazing disability advocates who enriched The Mighty community. Imagine how this would look on a Mighty headline: "Disability website silences the voices of people with disability".

Carly

 

 

 

 

Stop praying for and exploiting disabled children and adults on Facebook.

 

"When you see photos, video clips etc with the line about "like = love" "ignore = hate" etc: Please be aware that the person who posted the picture probably has no ownership of the picture. Quite often pictures of people, especially children, with disabilities or visible difference are appropriated by heartless people who use the image to draw attention to their facebook page so they can become '(in)famous'. They do not do this because they are a caring person, they do it because they know that YOU are a caring person and will like something they have shared thus boosting traffic to their facebook page, where sometimes there are links to things you would never choose to be associated with. It is wrong on every level to share photos that are not yours to share. It is wrong to post photos that are not yours to post."

- Rose Quartz, disability activist

I wrote about one like = one prayer slacktivism posts here in 2013. You know the posts.

• "don’t scroll without typing amen."
• "if you woke up this morning and your thankful every day while being bless scroll down and type amen"
• "how many likes can she get?"
• "this baby still cute, scroll if you're heartless"
• "ignore if you're heartless"
• "keep scrolling if you're heartless"
• "Ignore If You Have No Heart"
• One like = one prayer.

In recent months, I've seen increasingly more one like = one prayer type posts on Facebook - featuring children and adults with Ichthyosis, and also people with various disabilities.

(Image description: text of "NEW COMMANDMENT: Thou shalt not post pictures online that say 1 share = one prayer. Jesus hates that crap. God.")(Source)

It's recently happened to Jack, Brenna, Evan and Steph (and many, many more). People are stealing photos and using them on Facebook pages and groups. Hell, I saw one 'prayer group', dedicated to sharing these photos, encouraging mindless scrolling and typing amen. What does this achieve?

These posts don't state or explain a diagnosis or aspects of disabilities (not that strangers need to know), humanise the person featured, nor, as Craig Wallace and Jax Brown told The Age, draw attention to any real issues people with disabilities face (like access and employment).

(Image; accessible toilet that's not so accessible because it contains a sound system. Text; "@CraigWtweets: Wanna share disability pix? Try this of a #CBR disabled loo filled with a hose, cleaning stuff & entire sound system")

I am praying for that toilet. Praying so hard it walks some day. No seriously. Sharing these types of pictures is a great idea.

The one like = one prayer posts show people are gullible. Hundreds prayed for this dog - inflicted with a facial deformity.

(Image: a dog with a "facial deformity". Text: This poor dog was badly burned and disfigured trying to save his family from a house fire." One like = one prayer. One share = ten prayers.)

It was a piece of ham on his face. So laughably gullible. (Read the prayers here.)

Hoax slayer says:

"Sometimes, the posts are used as an underhand method of promoting bands, actors, businesses, or other entities. And, a Facebook page that distributes one of these fake ‘amen’ posts can gather a great many new likes in a short time. The Page can then be used to post further scam messages, this time to a much larger audience. Alternatively, the page can be sold to other scammers via the black market."

But the biggest impact is on those who have had their photos stolen. I found out Evan's photo was misused on Disability Day (a friend sent me the link) and was devastated. His photo was published on a page where the owner believed women with tattoos were bad mothers. This beautiful, innocent little boy and his loving mother were ridiculed for a genetic condition. I cried.

(Image: a then three year old Evan, who has harlequin Ichthyosis, smiling and holding a sign saying "IAM happy with my life and hopeful for my future", standing next to Bruli, a chocolate labrador. Text: Give them Hope. Give them a new mother. The horrors of every day life for a child who suffers from FIS extended well beyond how they look or how society views them. These tortured soils lack the proper structure and self esteem which children of pure skinned mothers may provide. This holiday season I want you to consider opening your hearts and homes to a child who has been abused their entire life. Give them hole for a brighter tomorrow. Even if it costs a horrible inky mother her freedoms. Merry Christmas")

The caption on the photo is so misinformed. Commenters wanted to adopt Evan but didn't know if he was contagious or not! And De is a tattoo free mother.

I wrote to Mark Zuckerberg urging him to take action (of course it went unnoticed). Luckily (or not) I had a template to use for the letter - I modified the letter I wrote to Youtube's CEO when Mui and Hunter's photo was misused.

Evans' mum De said:

"When Evan's photo was stolen, I did not even get the "pleasure" of a like for prayers post. Instead his appearance was being mocked and ridiculed claiming he was suffering due to his mother's tattoos. It is almost humorous to think anyone would ever believe such a thing and sickening anyone would follow such a judgmental racist page. But it does happen.

I personally felt attacked. Since they were pointing "blame" on the mother and many of he comments were blaming the mother for his condition- infuriated me. Are people really that fucking stupid?!?"

After countless reports from Facebook users, Evan's photo was not removed. De found a link to a form for parents to report their child's photo. The form is here.

A couple of weeks later, Jack's photo was misused, and his parents had to endure awful abuse, assumptions and prayers from gullible commenters. Again, I was devastated. I've met this gorgeous, joyous little boy and his parents Julie and Danny - they're dedicated to raising money for Ichthyosis research. They don't deserve this.

(Image from Elvis Manuel Cabera's Facebook page: Julie, Jack and Danny Oldacres. Jack has Netherton's Syndrome (Ichthyosis). Text: "like = respect, ignore = heartless, comment Amen.")

Understandably, Julie and Danny were ropable. At the time, Julie described it and the comments as "disability hate crime". She told me:

"When our picture came up on one of these posts I felt angry, upset, helpless and ridiculed! I thought as a parent we are there to protect our children and I felt like this was taken out of my hands. That angered me because I wasn't control of the situation! This must stop - it's such a violation of people!"

The page Jack's photo was featured on was full of kids' photos - all had various disabilities, all calling for prayers. Jack's parents wrote that this was their son, and others said his photo was stolen. Their comments went unnoticed, with hundreds of prayers. Elvis had guilted people into liking and praying.

My message to the page owner and commenters was:

I know this boy and his family. He has ichthyosis - a rare, severe skin condition. This photo has been stolen and used without his parents' permission. All of the other photos on your page have been too. Please remove them.

What you are doing is exploiting vulnerable people with visible differences. An amen or a like won't help them. What will help is if people like you stopped stealing and sharing these photos for traffic. You are scum.

To the people liking and praying for the people in these photos - STOP. Stop being so gullible. Scroll past the photos and ignore. Or report the photos if you really want to do something good for the people in the photos. I bet you would be the type to stare at people who look different in the street.

More information on ichthyosis can be found at http://www.ichthyosis.org.uk - go look it up before typing amen, you mindless pack.

The photo is still there and the page owner has thousands of 'friends'. He continues to post these photos. At the time of writing this, Jack's stolen photo has more than 13,000 likes on it.

When a photo is misused like this, it affects the whole ichthyosis community. It's a terrible representation of those living with the condition, a judgement on their parents and quality of life, and sheer exploitation. After my post was misused on Reddit, I've been active in ensuring I call out these posts, and also letting people know I'm there for them because I'm aware of how damaging these posts and subsequent comments can be to the esteem. I've been vocal on Facebook, asking my friends and followers to report the posts my friends feature in. When the photo has been reported, Facebook replies with a message that the posts have not breached community standards.

So let me get this straight.

Facebook's community moderators would be fine with their photos being stolen and misused.

It's not hate speech because it mentions prayers. So loving.

It's not urgent to be removed because it features children with disability. It implies disabled people are not valued enough.

I can take my top off for a photo and it would be removed straight away.

As the prayer posts keep coming, and I see the subjects of the posts feeling increasingly angry, upset and violated, I wonder how the perpetuators feel:

I wonder what 13000 likes feels like. Does it make you feel like a big man?

Is there a rush when likes and comments come through? Is there a sense of achievement that you are reaching so many?

Do you feel you're doing something good?

How much money are you making from exploiting these people?

I wonder what it feels like to be a sheep, to hide behind religion and type amen, when your slacktivism could be put to good use.

And I wonder how Facebook's employees can condone the theft of these photos (and other abuse and bullying - think of the abuse Clem Ford has copped via private message - it's no wonder she has taken to outing it and the abusers to their employers). Their one-size-fits-all reporting policy is not working. I hope to address this with a Facebook (and Youtube and Reddit) employee someday, to tell them of the human cost of these posts.

To pray for a disabled person is kind, sure. But it doesn't help. It perpetuates the idea that we need saving and are suffering. Many of us lead fulfilling, happy and successful lives. And prayers don't address actual disability issues.

Please, I urge you to stop mindlessly typing amen and do something constructive to help disability. Don't feel guilty because a Facebook user tells you you're heartless for ignoring the posts. Ignore them. And I urge Facebook to review its community standards. It's certainly not an inclusive, compassionate and honest community when people are exploiting disabled kids for likes.

You can read the article in The Age - I was interviewed and so were my awesome disability activist friends.

(Image: The Age newspaper screenshot, Carly Findlay in a blue and pink floral dress (thanks St Frock!), standing under a tree. Not smiling. They said it was too serious an article to smile!)

Edit: I also chatted on the radio about this topic. Listen here.

 

Appearance diversity, The Undateables and online disability hate speech.

(Image description: The Sun Facebook page, 5 January 2016. Steve and Vicky Carruthers on their wedding day. Text: "I don't care if my child has Crouzon or Downs Syndrome or any syndrome. We want to bring a life into this world and make our child feel happy, not ashamed, about who they are." The Undateables star who found love is set to start a family despite abuse.)

 

The Undateables started on Channel 4 in the UK this week. It's a show about people with visible differences and disabilities searching for love. I wrote about The Undateables in 2013.

The show's title is problematic - suggesting people with visible differences and disabilities are undesirable, Undateable. The show makes disability a spectacle, and I also believe there is a 'feel good' push for the audience (on the verge of inspiration porn), But it is highlighting appearance diversity, which is commendable.

As I wrote here, when sensationalist reality TV shows (especially about disability and visibly different appearances) air, the social media commentary can be brutal. Armchair hate speech is rife.

Another program that aired in the UK this week was Tricks of the Restaurant Trade, and viewers discussed it on social media. Like The Undateables, it featured a person with a facial difference. It caused a stir.

Appearance activism group Changing Faces challenged some of the responses to the program on Twitter. One man said he isn't sure he'd want someone who looks different sitting at the front of his restaurant. He would be worried a customer's visibly different appearance would discourage potential customers from entering his restaurant, and appearance could determine where he seated them. You can read the full exchange between @tayhills and Changing Faces from here. This was the part of the conversation that shocked me most:

"@FaceEquality: ".@tayhils @Adam_Pearson You said you "wouldn’t want him sat in the window of [your] restaurant". Why?"

@tayhils: @FaceEquality @Adam_Pearson "because I wouldn't want anyone to avoid coming into my restaurant because of his face."

When challenged by someone else, @tayhills said he wouldn't put someone who looked different "in the 'back room' either. I'd just seat him somewhere comfortable that didn't affec[t] my business."

But he's ok with seating "pretty girls" in a window to attract customers.

"@adamwisdish95: @tayhils Turn it around, do you make sure that there's always two pretty girls in the window seat so that people are more likely to enter?

@tayhils: @adamwisdish95 That's not something I'm opposed to doing either. It would depend on the customer base."

Imagine @tayhils sat someone out of other customers' view, so as not to deter business - or worse - refused someone entry into his restaurant because of RACE (Face)?

The hateful, discriminatory, derogatory language towards is concerning. If people are talking like this from their living rooms or on their bus, scrolling through their phones leaving seemingly thoughtless comments, how are they reacting towards visibly different and disabled people in the streets?

Who knows if @tayhills would actually carry out his discriminatory threat if someone with a facial disfigurement entered his restaurant - his bravado might be false. Would he let me in to his restaurant and place me where I'm not in plain view, or would I get lucky and be seated near the window?

But his mere words indicate intolerance and hate speech. Disability activist Adam Pearson, who has neurofibromatosis type 1, (he describes it as "a condition that causes benign tumours to grow on nerve endings - in my case, on my face"), has written how derogatory remarks can lead to disability hate crime.

Adam says disability hate crime is

"any criminal offence where the victim, or another person, thinks it has happened because of prejudice based on their disability, or perceived disability.

But the behaviours I do come into contact with, if left unchecked and unchallenged, can become the origins of such hate crime. Pointing and staring can quickly progress into name-calling, particularly on nights out when alcohol is added to the equation.

It's in the pub, when I'm having a pint of beer after a hard week of work that I feel at my most vulnerable and exposed.

When people get drunk, they like to call me names. I have been called "spastic", "elephant man" and "deformed mutant". Whatever motivates such behaviour, following the definition, this is disability hate crime."

The judgement and exclusion of people that happens face to face can be tiring. It can be aggressive and demoralising. It can get violent.

The online conversation that goes on around those who look different is just as bad. Perhaps the keyboard warriors have had just as many drinks at home in front of the TV as they do in the pub?! Sadly, programs aimed at raising awareness such as The Undateables can perpetuate discriminatory attitudes towards appearance diversity, and it's amplified because social media users have an immediate and sometimes vast audience.

My friend Steve Carruthers, one of The Undateables contestants, has found love and recently married (so happy for him!).

(Image: Steve Carruthers and his wife Vicky.)

He has done a lot of media about the series this week. The hate speech Steve (and his wife) endured on social media brought me to tears, with people suggesting the couple should not have children because of the risk of passing on Crouzon Syndrome. The public gallery are weighing into their right and ability to start a family due to his disability. Of course they are.

Steve courageously and graciously responded to some of the social media comments:

"Those posting comments in a negative light your entitled to your opinion but you really know nothing of my upbringing. I was brought up with 3 other siblings with the exact same condition one was severley disabled but led a v v amazing life amd achieved alot he had many college degrees a career in his teens as a regional disabled athlete winning gold medals in regional disability running. My sister had 2 beautiful kids without cruzons and also i was brought up very well im a university educated man with a good job and a happy life. I will bring my child up in exactly the same way with with love happiness and care regardless of their condition. Your defined by the life you lead not by your disability."

Steve told me how he felt seeing the comments:

"It's made me feel a bit upset that some people feel so strongly against anyone having a disabled child just because they feel its cruel. In this day and age bringing any child into this world theres a risk of bullying regardless of disability or not."

People might not think their words on social media (and laughter behind the screen) are harmful. They might be good people, claiming to have a diverse friendship group and go to church regularly. But their words are telling. It shows their discomfort about disability and visible differences, and their privilege as well. Their words are long lasting, with the capacity to be shared and read over and over. Perhaps a bigger impact than an encounter with a rude drunk in a pub. This online cowardice is indicative of society's judgement of visibly different people.

The reactions to this disability hate speech (I will keep calling it that because that's what it is) are equally as telling - with compassionate, educated and open minded people calling them out. If you see these sorts of comments on social media, call it out. Don't stand for it. Stand up for those on the receiving end.

What if we regarded the impact of appearance-related discrimination and hate speech the same way as we see race-related discrimination (and that's not dismissing the latter)?

Replace race with face.

You can view James Partridge, Changing Faces' CEO's view on The Undateables here.

 

 

I wrote a poem.

It's a new year and as I wrote last week, I just want to write. I used to write poetry in my late teens and early twenties. There are spiral bound books full of scribbled teenage dreams in my wardrobe. They were mostly about boys who broke my heart. Really lame.

I had another go, 17 years from when I started. Here is my poem. 

I see how you are physically shocked when you see me.
You stop mid-walk, mid-sentence.

Mouth agape like a flat bicycle tire tube.
You stare.

Oh my god.
Wow.
Sunburnt.
Did you see her?
You laugh.

And you walk off. 

Our bodies turn to see if one another is looking. 

And our eyes meet one last time. 

I'm not afraid to look back at you until you become uncomfortable. 

I'm still looking.

You present me with platitudes that hang 

around my neck - loaded, strangling. 

They are compliments to you but weigh so much more for me.
Rusty rather than golden, 

I'd be ungrateful if I refused to accept them.

Even though.
Inspiring.
I know someone who...
Despite.
Still pretty.

That's not your child being shy.
That's your child frightened of my difference.
Hiding behind your legs, pointing, burying their face into you.

Mute to my greeting. Your child is too scared to look at me. 

There's 30 years between me and your child, 

and this moment takes me back to the playground. 

I'm still sad.

You tell me I'm angry for speaking out about discrimination and ableism and pity.
That my words make you scared you're saying the wrong thing.
I'm siding with the angry crowd, 

and I'm better than them, you assume. (They're my people.)

Calm down, lighten up.
It's best to just let things go, you say.
Not everything's a battle. 

I'm still writing.

There's an organisation researching for a cure.
Meanwhile, the every day is forgotten.
The every day maintenance, every day resilience and every day battle-

fighting with the surprised, condescending, scared and deniers.
Oh, but one day. Not now.
One day, they say, I won't have to look like this.
I'm still proud.

(Image description: pink and purple swirled paint. Text: "I'm still.")

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.

• Hosted a blog reader brunch
• Organised and hosted the Australian Ichthyosis meet
• Ran Ichthyosis awareness month on my blog again
• Helped baby Julius by raising money for creams for him (he's doing really well)
• Progressed in my day job
• Wrote stuff I'm really proud of - and got paid for a lot of it - here's one piece I love
• Spoke at two writers festivals
• Performed at the Fringe Festival
• Met the former Prime Miinister
• Was mentioned in an end of year wrap about women pushing back
• Planned my wedding (!!!)

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.

 

 

 

 

 

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!

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. 

Oversharing

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.

Commenters

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.

 

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).

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?

 

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!

 

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.)

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.