28 January 2016

A lesson in responding to a kid's shouty, pointy curiosity about my face.


The dream

I had a dream on Monday night that made me laugh and embarrassed. I think the dream came about because of a stare-bear (and his mother) I encountered on the weekend. It gets REALLY tiring.

A woman was staring at me a lot. And so I went a bit extreme. Instead of saying hello or smiling, or asking if I could help her, I wiped my face up her arm! Like a dog wiping its slobber.

Then I woke up in horror. Sleeping Carly forgot her manners.

SO ashamed. And amused. (Imagine if I really did that?!)

The reality

I stood behind three kids in a cinema queue. One kid (maybe four years old) was continuously staring at me so I smiled and said hello. His mother, at the ticket counter, turned around and saw me. He continued staring and I just looked away and talked to Adam.

Then the kid started pointing at me and said to his brother "look at that lady, look at that lady". So of course, everyone around looks at me! I said to the kid "please don't point at me It's rude." His mother turned around again and yelled "he's just a little kid. He can't help staring and pointing." I told her I'd said hello to him and smiled, which she had seen.

Then she told me I was rude. She said "I'm giving you an apology now" and "he's too little to understand" and walked off in a huff. The cinema attendant saw it all and said "I'm sorry, you must be so tired of that happening".

As we walked around the shopping centre, I kept coming back to the kid and his mother. She was so rude, I told Adam. Maybe I was rude too? That kid was embarrassing. The mother's response riled me. How can I keep letting these encounters make me feel so powerless, when I encounter them a lot? I couldn't stop thinking about it.

I hate these situations. I hate it when kids single me out and make everyone look. I hate it that kids are sometimes scared of me. I don't want anyone being scared of my face. I never know whether to launch in and explain or invite questions (Stella Young was good at this). And I hate seeming rude for speaking up when I'm uncomfortable.

He is just a kid, he does needs to learn. These encounters are teaching moments, and I'm a teacher. But it's tiring and I often feel powerless to a kid much younger than me.

Sometimes kids are cute and curious and I know what to say immediately, other times they are rude and their parents say nothing. I think encountering rude kids takes me back to my childhood - memories of being taunted and stared at then have stuck with me well into adulthood.

Perhaps a kid hasn't encountered different looking people until they've seen me? Maybe a parent hasn't prepared themselves for diversity? And I can't parent someone else's child.

Encounters like this one at the cinema remind me I'm always learning, just like the kid is. It's a lesson in tailored responses, diplomacy, thinking on my feet and approachability. I second guess my responses and feel ill-equipped. All the writing I'll ever do can't prepare me for a shouty, pointy kid in the cinema queue.

(Image: small female child wearing white top amd orange skirt, pointing upward. There's a rainbow drawing coming out of her head. Text: "Lessons in kids' curiosity" plus my blog URL.)


25 January 2016

What if I asked you whether you can have sex?

woman's bottom and legs on a bed, she's wearing short denim shorts and bunny slippers. Text: What if I asked you whether you can have sex? carlyfindlay.blogspot.com
Many think it's always necessary for disabled people or people with facial differences to take every opportunity to educate. Curiosity doesn't need to be satisfied.

People forget their manners when talking to me and others with disabilities and facial difference. They unleash their thoughts and prejudices before engaging their brains.

"Excuse me, can I ask you something?"

That's the most predictable question I'm ever asked.

It's often followed by the variations of these questions:

Have you been sunburnt?

What did you do to yourself?

Are you ok?

Are you wearing traditional African makeup?

Is that a Halloween costume?

Did you have micro dermabrasion?

Is there a cure for that?

That's eczema, isn't it?

Is it fatal?

Can you have children?

Have you been on Embarrassing Bodies?

Will you pass your condition to your children?

Do you resent your parents for giving you a genetic condition?

Can you have sex?

Have you been licking lollies? Is that why your face is so red?

Don't you wish you could change your appearance? (I would)

I've been asked all these questions and more. These questions were mostly asked by strangers. Often accompanied by the universal 'I'm not sure what to say about your face' wave - except they've said it anyway.

I often want to unleash similar questions back to them. (Of course I'd never ask.)

How much do you earn?

Did your poo float or sink?

How many times did you have sex this week?

Did you have a vaginal birth?

What's your favourite porn site?

How much do you weigh?

Are you really happy with your face?

Which child is your least favourite?

Do you masturbate?

Do you stand to wipe?

Would your consider plastic surgery?

I'd like to watch them squirm. I'd like them to think about their actions so hard they apologise and then pass on the message to their friends: never ask a stranger about their appearance. Unless it's to compliment them. Like an etiquette know-how pay it forward arrangement.

Here's the thing. When you look different, your appearance is public property for other people's comments. Kind of like being featured in the hot or not section of a tabloid magazine. Only in real life. In the street. On a tram. In an African restaurant. In the queue for a band. At the supermarket. In the public toilet. Unrelenting.

And the questions come from all types. People who look like they should know better. People who probably don't. People who just need to know.

But they don't need to know. They're not entitled to an explanation if we haven't got the formalities of saying hello out the way.

A version of this was performed at Quippings in December 2015.

(Image description: woman's bottom and legs on a bed, she's wearing short denim shorts and bunny slippers. Text: "What if I asked you whether you can have sex? carlyfindlay.blogspot.com")

24 January 2016

#AppearanceDiversity: help find Ellen a flatmate in Adelaide


I really want to help a friend out - and think that you lovely, open minded readers will be able to assist.

My friend Ellen is looking for a flatmate in Adelaide, Australia. Her fully furnished two bedroom flat is near Adelaide CBD & Flinders university. It has a car space and a garage for storage, plus an Internet connection. And it's $160 a week.

Ellen is 24 years old, studying her honours, she is friendly, has a cat and is tidy. She's so smart and is a good conversationalist (we've had some great chats online). Ellen also has a facial difference.

Picture of Ellen, who is looking for a flatmate. She has blonde hair a beautiful smile.

She's had inquires from over 50 potential flatmates since late December, and they've all fallen through. Ellen told me this experience has brought up questions about how she manages disclosing (or not) her facial difference.

"I've met a few nice people, but most turn up on my door step and I can see the "crap. What did I get myself into?" looks on their faces when I answer the door. They then usually quickly walk through the rooms, don't even really "look", then get out the door asap. It's like I've put them on the back foot by not giving them some kind of warning before hand. But the few times I did a brief introductory "friendly" email/text about me that just made it worse."

She's positive though. In Ellen's words:

"I tell myself that it is not a reflection on me, it's just that many are not "Worldly" enough yet. They haven't experienced enough in life and haven't needed to confront or entertain the possibility that a person who has a disability can be independent, capable, intelligent too. That the landlady advertising a nice apartment in a prime location in an inner city suburb might actually have a disability. Might be a bit out of the ordinary. Might look "disabled".

But I'm actually fiercely independent. I am insanely loyal to my friends, I will do anything to help others out, but can't stand being "helped", or mollycoddled. I don't like the tokenism that is implied when people say to my friends "it takes a really special person like you to be friends with Ellen". I am determined to succeed in life. Not just get by "inspite" of disability or set back. I will define myself beyond the experience of disability. I have to be able to prove that I'm more than the way I look - that there is more meaning & substance to my life."

I'm not sharing Ellen's story to evoke sympathy or pity. This is often the reality of looking different - the low expectations, closed mindedness, discomfort and rejection. And while she's not taking the reactions personally, she can accurately read these reactions to her appearance.

I'm sharing Ellen's story to help get her a flatmate. She loves living in her flat and deserves someone to treat her respectfully, help cover half the costs and form a true friendship. And I know, from the conversations about facial difference and disability you've had on this blog and my Facebook and Instagram accounts, you're the right people to share it with.

If you know of a person who's looking to share a flat in Adelaide, please share this post. Thank you.


21 January 2016

Meeting Nigella Lawson. 'I really love the taste of these sentences.'

(Image: me meeting Nigella Lawson. She's signing my book. Photograph by Melissa Hobbs Photography.)


The Christmas before I moved out of home, my parents gave me Nigella Bites. That and Jamie Oliver's The Naked Chef were the cookbooks that taught me the basics of cooking. My favourite thing to cook from Nigella Bites is her stovetop rice pudding - it's my comfort dessert. I love it with cardamom or lemon zest, and sometimes rosewater. I've been a fan of her cooking shows for years, too. I especially like the way she sneaks leftovers from the fridge at midnight.

So when I heard she was coming to Australia and speaking at a Business Chicks event, I snapped up tickets on the day they were released. My mum, Julia, my manager and her friend came along too. Mum, Julia and I had a girly night in a hotel before breakfast with Nigella - so much fun. We met Julia's beautiful family - her four girls and husband - they are delightful.

(Image: Mum, Julia and I in our pyjamas, the night before Nigella.)


Last Tuesday morning, Nigella was interviewed by journalist Anjali Rao, in front of 1800 people at Crown Casino. She promoted her new book - Simply Nigella - describing it as "a mixture of serenity and cosiness".

(Image: Simply Nigella book in front of a sign saying "the world is your goddamn oyster".)

She was so calm, articulate and passionate about home cooking. It was far too brief. These talks are never long enough. I could listen to Business Chicks' speakers for hours.

Nigella started by saying she loves Australian food, saying it has a freshness and vibrancy, influenced by Greek, Italian and Asian cultures. She said when she visits Australia, she learns about ingredients she didn't know about before - like white soy sauce and coconut vinegar (thanks for the tips!)

She joked about the Melbourne weather - "the great thing about Melbourne is if it's too hot, I wait a bit longer and it gets cold."

I really loved hearing her thoughts on the connection between language and food. She was once a journalist. "Language got me into food", she said. She didn't want to manage staff at the Sunday Times so she took on a writing contract.

My favourite quote from her whole talk was "when I read a book, I think 'I really love the taste of these sentences'". So gorgeous. (Here she talks about her life in food.) And as I flicked through her new book, I relished the language she uses.

She clarified her sultriness when cooking on camera: "I try to use language to convey the feelings when I cook. I'm focused on the sounds. I'm like a sports commentator, doing commentary on what I'm cooking", she said.

Nigella talked about her role to "encourage", not "harangue" readers about food. She hates the clean eating movement - her thoughts on this have been documented in recent interviews. She believes people can't eat well when they're made to feel bad about their food. "You never make any good decisions from a bad place. That's not helpful." Nigella touched on her mother's troubled relationship work food, saying she didn't want to take that path. "I don't deny myself food, but I don't binge on it either. I love baking. It doesn't mean I eat cake every day", she said.

She spoke about the merits of home cooking, and how she wants to elevate the importance of home cooking. "How we cook at home is the true story of cooking. I felt there was something wrong that cooking had been dominated by the qualified chef. But a chef hasn't got the freedom to play with recipes once they're on the menu. It's conveyor belt cooking. I'd feel very hemmed in having to cook the same thing over and over again." She described chefs as "a prisoner of their own brilliance", because no one wants to eat a modified dish off the menu they love. "I don't think you can pretend your home is a restaurant."

I think the whole Palladium was impressed when she said she doesn't believe Nigella is a brand. "I don't wish to be a commodity." She does all her social media herself. She is hands on with her work - looking down the barrel of the lens in all photo shoots. "I won't let anything go out unless I've written it", she said. She added she wouldn't recommend not being a good delegator to everyone, though.

Nigella prefers slow food to fast cooking. "Slow food doesn't mean stodgy, nostalgic or bland", she said. "A bowl of ramen is uplifting." She described fast cooking as "a bit frenetic." "I don't find chopping for a stirfry calming, I'd rather put a chicken in the oven", she told us.

Continuing on the anti-food-shaming theme, she doesn't want to make anyone feel bad for not being able to cook. "I don't think a person who can cook is morally superior."

She ended with talking about her favourite recipe from her new book - chicken shawarma. She enjoys it as part of an indoor picnic.

After the interview, Nigella signed her book. It was a long wait for a very brief meeting. And no photos with her either. But I managed to snap a couple after our meet.

(Images: Nigella Lawson smiling and signing books.)

I was so proud of Julia giving Nigella her own best selling book!

Nigella was very friendly - she smiled and thanked me when I told her she taught me how to cook when I left home. And she's radiant. So beautiful. It was nice to say hello to someone who really has influenced me.

What an exciting breakfast! I really love hearing successful women share their stories.

Have you had breakfast with a celebrity cook before? What did they cook?!

18 January 2016

Seven things Julia Gillard taught me when I met her.

Julia Gillard and Carly Findlay

In November, I was lucky enough to meet Julia Gillard, Australia's first female prime minister. Julia is the patron of the Layne Beachley Aim for the Stars Foundation, and I am an ambassador and 2012 grant recipient. I admire Julia a lot, and was so excited to be invited to the women in leadership luncheon event. I had seen her speak in 2013 and was inspired then.

It was a stinking hot day in Sydney and so after an early arrival and a 10 minute walk from the train station to the hotel, I was a bit exhausted. So I stayed in the hotel all day. It was great to get there early as it meant I could spend time with the other ambassadors (Parrys Raines and Mel Thomas) help the Aim for the Stars team prepare for Julia's arrival.

Before the luncheon, Julia addressed a group of female students aged 12-17. They were recipients of Make A Mark Project scholarships to attend the lunch. And these girls were amazing. Parrys and I interviewed them on camera, asking them their goals and why they admired Julia Gillard. One girl I interviewed gave me such a mature, complex description about her career plans, I was lost for words! Girls said they want to be social workers, human rights lawyers, environmentalists.

Mel then warmed the girls up by talking about the Foundation and her work running KYUP! Project (empowering girls to grow up free from violence). She was an excellent host. Parrys Parrys spoke of her initiative - climate change activism - and achievements - she'd just been on stage with Pharell Williams, discussing climate change in LA. This woman is 21 and has accomplished so much.

I then spoke about my writing and activism, and the girls had excellent questions. Questions included whether the government is doing enough for people with disability? How do I balance things? Was my ichthyosis community there in real life before you started blogging? How do I cope with criticism? I loved how broadly they thought.

And then Julia arrived! We had practiced standing and clapping but I think our practice was forgotten in the excitement!

Julia spent 10 minutes speaking about the importance of education. "Never take your education for granted", she said. Julia is currently Chair of Global Partnership for Education.

She mentioned inequity across the developed and third worlds, and also about local education. She praised public education, saying she received quality education from state schools in South Australia.

After she spoke to the students, Layne Beachley introduced Parrys, Mel and I to Julia. Our conversation was very brief - Layne reminded us about our elevator pitches, and so I told Julia about my writing and thanked her for the NDIS. I gave her my card, and she said "I must catch up with your blog". I was totally fangirling. We then had photos, and she was very funny, offering to sprawl across the grand piano.



Mel Thomas, Julia Gillard, Parrys Raines and I
Mel Thomas, Julia Gillard, Parrys Raines and I


The luncheon commenced with Layne Beachley opening it. She spoke of why she started the Foundation, and told us a hilarious story of her interaction with Kevin Rudd (Julia's predecessor).

Layne Beachley and I
Layne Beachley and I



Julia was also was very funny during her keynote speech, referring to 50 Shades of Grey, and talking football with MC Holly Ransom. Here's what she taught me.

1. "Hone your sense of purpose."

Julia said she believes it's important to advocate for something more thoughtful than slogan selection. She said the best piece of advice she received was from a mentor who told her, in the midst of all of the chaos, Julia should sit down and write down her sense of purpose. "On the toughest of days, the worst of days, it was a touch stone, reminding me what I was in for."

2. "I've never defined myself through approval from others. I always had an inner reserve within myself when I didn't feel liked."

3. On the impact of social media: "If it [nastiness] comes in on Twitter after midnight, it's fuelled by alcohol not acumen, and don't let it get in your head."

4. "Find discipline to take time to do what matters."

Julia said "never has the urgent been more privileged." She encouraged us to think about taking time to get urgent done versus taking time to get what matters done.

5. "I think alone and with the best and brightest around me." PJulia spoke of the importance of a support network. "You will need people around you on your side. You need their loving and nurturing support as you give them. You've got to surround yourself with people who care for you. Remember make the time to support and care for them in return."

6. "While I don't underestimate the challenges and prejudice in this world, I'm a huge optimist."

Julia talked about gender inequality and stereotypes and strongly believes that education will improve this.

7. "Think big. It will pay dividends."Enough said.

No matter what side of politics you lean, Julia's wisdom is universally applicable. She is so warm and articulate and very funny.

There were also three other female leaders on the speaking panel: Cindy Hook - CEO Deloitte, Louise Herron - CEO Sydney Opera House and Cathy Foley from CSIRO. They had some great messages - my biggest take homes were from Cathy Foley who is both a scientist and a comedian.

"Don't be a victim As soon as you become a victim you're giving up."

"To be different you have to do different."

"Never go to work without knowing what's for dinner tonight. My husband taught me this and I married him."

"Never go to bed without knowing what you're wearing next morning."

"Housework - don't worry about that."

After the luncheon, I spoke to Kirk Pengilly (Layne's husband) and the first thing I told him was that Camille had her transplant. When I met him in 2012, he called her.

Carly Findlay and Kirk Pengilly
Kirk Pengilly and I

And then I met my second cousin Ben, he works for Deloitte.

Carly Findlay and Ben Findlay
Carly Findlay and Ben Findlay

Such a good surprise!

He introduced me to Julia Gillard's partner who was just lovely.


And I finally met Kate Sutton, founder of UberKate Jewels.

Carly Findlay With Kate Sutton from UberKate
With Kate Sutton from UberKate


It was SUCH a wonderful event and I returned from Sydney feeling tired yet empowered. Meeting Julia Gillard was a bucket list item ticked off, and hearing from so many successful female leaders gave me lots of ideas and inspiration.

Mel Thomas,  Julia Gillard, Parrys Raines, Carly Findlay and Layne Beachley
Mel Thomas, Julia Gillard, Parrys Raines, me and Layne Beachley


I attended the luncheon as an ambassador for Layne Beachley Aim for the Stars Foundation. I paid for my own airfare.


14 January 2016

Dinner with a stranger.

(Image: dessert: a quenelle of blueberry sorbet, a rectangle of goats cheese cake, sprinkled with puffed quinoa and sultanas, on a black plate)

My life felt like a movie last Monday evening. I had planned on going home, setting up Apple TV, cooking a quick meal and writing until Adam got home late from a job. It's funny how life has other plans.

As I walked from work to the train station, a man who was probably five years older than my Dad asked for directions to a restaurant. He had a map and pointed to where he needed to go. I told him I was going near there, and I would show him where to turn. He seemed to need further directions than "turn left, walk up the lane way and turn left again". I didn't have anywhere to be so I said I'd walk him there.

We got talking. He's from Tahiti, on holiday in Melbourne for a week. I pointed out Parliament and he asked how old the building was. We arrived at the restaurant - San Telmo - he was hungry for a flame cooked steak.

He asked if I would like to join him for dinner, and I did, thanking him for his generosity. He was so excited for Argentinian food - the French girl at his hotel recommended it. He said if it was a good meal, he'd be telling his travel agent back home, so she can recommend it to other travellers.

We both had a glass of red wine, steak (him sirloin and eye filet for me), fried broccoli and salad, and I had a goats cheesecake with blueberry sorbet quinoa puffs. The food was delicious.

We talked about all sorts of things - his children, our love of food (he's a chef), how he retired at a young age, and the Tahitian lagoon views from his windows.

I told him about my upcoming wedding and work. He told me to tell Adam to look after me, and that we had better take a photo because Adam wouldn't believe I had a meal with a stranger I met on the street!

We spoke of solo travel. He said he's enjoying Melbourne but feels lonely. I told him how I travelled for seven weeks alone, and he was surprised. He was missing home and his children.

It was nice to talk, to meet someone new and wise. He was so genuine.

Throughout dinner, he said he would never have found the restaurant if it wasn't for me. He was so thankful. I wrote down suggestions of other foodie places he should go to, and he said he would.

When we said goodbye, I thanked him for the meal, he thanked me for my directions and said that we have to repay kindness. I'm his one Melbourne friend now - I hope to hear from him again.

It's amazing who you can meet if you just stop to say hello.


12 January 2016

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".






11 January 2016

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)

(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.)

(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!)

(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.


08 January 2016

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.

(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!).

Steve Carruthers from The Undateables with his wife Vicky.

(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.



04 January 2016

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.
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.
I know someone who...
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.")


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