Carly Findlay's Blog, page 27

Strike a pose – the #VogueChallenge

[image error]Image: A mock up Vogue magazine cover. It features a maroon Vogue masthead, above a woman with a red face and short dark curly hair, tied up in a colourful scarf. She’s wearing a pomegranate print dress over a grey top. She’s smiling. Text around her reads: “I wore this today and felt fucking fabulous”, “how to be a good disability ally” and “Say Hello to Carly Findlay OAM Growing Up Disabled in Australia”

In June, when I partook in the #VogueChallenge, I brashly asked Vogue Australia to call me. THEY DID! (Via Instagram DM – how very 2020!)

Fast forward to August – and my Vogue cover was featured in this beautiful issue, alongside Marley Morgan, Bobbi Lockyer, Shanice Mwath, Toni-Louise Lord, Jame Telfer, Leicolhn McKellar, Sophia Chowdhury, Rubi Red and Khylee Fleek. Adut Akeh Bior is on the cover.

[image error]Image: the August 2020 Vogue cover – featuring a Black woman in a tartan suit, crouching.

Now is the time to stop centering white, thin, non disabled women. Now is the time to represent what society really looks like – to show a diversity of bodies, faces, races, skin types and perspectives, it’s also time that diverse people wrote stories about ourselves – rather than being written about and othered, for someone else gaze. And we want to write about more than just our diversity.

I don’t want diversity to be a special edition, a buzzword or fad. I want to see it in every issue.

Big thanks to Karen who made my mock up cover, Grace from GiDi Creative for making this happen, and to Alice at Vogue for the collaborative writing experience. Can’t wait to do a photoshoot with you one day!

[image error]Image: the page my article features on. At the top is an image of Shanice Mwath on a mock Vogue cover. Shanice is a Black woman holding a yellow rose. She has dark plaits.
Next to the photo is text that reads
“SHANICE MWATHI
“I am a filmmaker and photographer. I’m originally from Nairobi, Kenya, but I grew up and am currently based in Perth, Western Australia.”
Tell us about the idea behind the image you created and the messages you wanted to capture in it.
“I wasn’t sure exactly what I wanted but I knew I wanted to rep the culture somehow and go bold, so I gathered all the traditional cloths we have in the house. We call them kangas or lesos, and they’re made of bright fabric and usually have a Swahili proverb written on them. I wanted to capture the essence of Vogue, its emphasis on individuality and the strong feminine energy present on every cover. I wanted my cover to be reminiscent of the sparkly softly lit divas of the 70s Soul Train era with a contemporary aesthetic.”
In what ways can the #VogueChallenge push us all to make collective change for a better industry in the long-term? “The #VogueChallenge is a knee-jerk reflex of the atmosphere we have seen brewing – that of re-examining the structures in society and determining whether or not these structures actually serve all of us. The energy of most people of colour is a deep sense of weariness in a world that does not afford them any rest. All over the world people have used this hashtag to take a stand against the general disregard big brands have for imagery featuring typically under-represented people. Change happens when this social media activitism manifests.”
Below Shanice’s article is my mock vogue cover and text:
“CARLY FINDLAY
“I am Carly Findlay OAM – writer, speaker, appearance activist, lifetime fan of Darren Hayes, lover of cheese, wearer of rainbows. I write and speak about what it’s like to live with a rare severe skin condition that causes a facial difference, aiming to change people’s perspectives of facial differences and skin conditions.”
Why did you decide to do the #VogueChallenge?
“I had seen other people of colour – including those with ichthyosis (the rare, severe skin condition I have) do the challenge. I put a call out on Twitter for someone to help Photoshop me onto Vogue, and a stranger did! I was thrilled!” Tell us about the idea and messages behind the final image you posted.
“I woke up and it was in my mentions and I squealed! [Karen] captured me so well [and I like the cover lines]: the two book titles; my mission; and the ‘fucking fabulous’ statement.”
What do you want to communicate about representation in the fashion and beauty industries in this image?
“There is no shame in being disabled, having a skin condition or facial difference. For years I would worry about skin flakes showing on my shoulders, or even not wanting to be in photos due to standing out. This was a result of the shame put upon me by others. I was at [comedian, journalist and activist] Stella Young’s memorial in December 2014 and hugged her sister. I left a big face print on her pink jacket – the print from my ointment. She told me not to apologise, and I remembered how Stella never apologised for taking up space. And so I stopped feeling so self-conscious. I wear what I want now. I see my colour as my accessory. I will not make myself less visible to make others more comfortable. I want all readers of fashion and beauty magazines to be able to see themselves, and not feel the shame that I felt for so long because I wasn’t represented. I want To be that change.”

Has this blog made you think differently about appearance diversity? Will you use it in your work? Please consider buying me a drink.

You can also buy my memoir, Say Hello. I write on fashion in it. It’s available in paperback, ebook and audio book formats.

The Astrid Edwards Megamix

I’ve been collecting interviews with Astrid Edwards – bibliophile and podcasting extraordinaire.

[image error]Image: A selfie of two women, smiling. One woman has fair skin and dark Lon hair and is wearing backs. The other woman has a ref face and short dark curly hair, and is wearing a gold and pink floral jacket over a floral dress.

She’s an incredible interviewer so I was thrilled when she asked me to be interviewed. Last October I had the privilege of seeing her interview the great Richard Fidler at Ubud Writers and Readers Festival. Amazing! Astrid is a huge supporter of writers, especially women writers, and I’m proud to call her a friend and colleague (she’s one of only four friends whom I’ve seen since March!). Astrid is also a contributor in Growing Up Disabled in Australia, my second book, which is out in February 2021. Listen to The Garret podcast and Anonymous Was a Woman.

Astrid interviewed me on The Garret podcast which aired early this year. I’ve been listening to The Garret for years, I love to hear writers’ processes. This was the first time she and I properly sat down to chat, actually, despite meeting before. Listen to the podcast below, and read the transcript here.

In May we had a virtual afternoon chat for The State Library of Victoria.

Most recently, Astrid coordinated an interview for Anonymous was a Woman, the podcast she does with Jamila Rizvi about books. I talked to Jamila about being a woman of colour and also two books I’ve read by women of colour this year. Listen below.

Thanks so much for chatting with me Astrid. You are a star!

Have these interviews helped you think or will you use it in your work? Please consider buying me a drink.
My book Say Hello is our now – in paperback, audio, and ebook. Details here.

How to respond to micro-aggressions

[image error]Image: A selfie of a woman with a red face and short dark curly hair, wearing a purple, red and brown floral dress over a mustard roll neck jumper. She’s smiling a little. Pinned to her jumper is a brooch that is a glamorous Black woman performer, dressed in red. At the bottom of the photo is text “how to respond to micro-aggressions” – it’s black capital letters on horizontal red blocks.

This morning’s post was about well intended questions and comments that I have been asked – and from the comments, MANY people relate. These questions and comments are called micro-aggressions.

Derald W Sue defines micro-aggressions as

“The everyday slights, indignities, put downs and insults that people of color, women, LGBT populations or those who are marginalized experiences in their day-to-day interactions with people.” Derald has written two books on micro-aggressions, and there are countless other resources explaining and exemplifying micro-aggressions available. Just google!

Micro-aggressions can be wearing, especially if they happen regularly and also if you can see and name them, but more privileged people cannot.

Responding to micro-aggressions can be tricky. Sometimes you don’t want to inflame the situation. Other times you just want to alert the person to how rude and tiring they are.

I tend to have a list of responses that I rattle off on autopilot. “I was born like this”, or “it’s a skin condition” or “no” are frequent statements that I follow a micro-aggression with.

Sure, education helps curb ignorance. But you don’t have to educate all the time. You’re not someone’s teachable moment. You are allowed to walk away, or even express how rude or hurtful or unthinking micro-aggressions are. I sometimes reply firmly by putting it back on the other person – “that’s very rude, would you like to be asked that too?” And that makes them realise just how inappropriate their question or comment is.

For allies, it’s important not to minimise micro-aggressions  – like by playing devils advocate. Saying “I didn’t hear it like that”, or “maybe you’re being too sensitive”, or “they meant well”) are not helpful statements, and show just how privileged you are by not being on the receiving end of micro-aggressions regularly.  This isn’t good ally behaviour. Take notice of what they look like, and don’t be a bystander. Call it out if appropriate – by quietly talking to the person dishing out the micro-aggression, and also sharing posts like this one and the previous one, so your friends, family and colleagues can identify what micro-aggressions look like and their impacts too.

Has this post helped you or made you think? Will you use it in your workplace or school? Please consider buying me a drink.

I have written more on micro-aggressions in my memoir, Say Hello. Buy it here. 

Your discomfort isn’t my burden. Think before you speak.

CW: ableism, suicide.

[image error]Image 1 – description at bottom of post and alt-text
[image error]Image 2 – description at bottom of the post and in alt-text

Inspired by @thevaluable500’s and also Caroline Bowditch’s prompt on unconscious bias at Diversity Arts Austealia workshop last week, I’ve had a think about the well meaning things that have been said to and asked of me.  And here are 18 of them – and I could list 118 more. Please don’t be jealous,  I’ve experienced all of this well-meaningness. Many interactions of this nature have been from people I have just met, but some situations have been with people who know me. Often they’re said by people who I expect to know better – people who are supposed to abide by a code of conduct for example.

It’s all well intentioned, isn’t it? Curiosity that needs to be satisfied, because disabled people are just expected to educate at all times. Politely of course.

But can you imagine being on the receiving end of these questions and comments – sometimes every multiple times a day? It can be hard just to get on with my day when confronted with these type of interactions. And it’s hard to move on to a new topic when these are opening lines. And it takes work to establish a sense of pride and self worth when people just blurt out what they’re thinking about about me.

I’m sure other disabled people can relate.

Most of these questions and statements seem pretty harmless to non disabled people. But some of them are blatantly gobsmacking. And the cumulative effect can be wearing.

Can you imagine being on a date where you’re told “I’d kill myself if I looked like you”. That’s happened to me. It was a well intentioned way of saying I’m really strong, but he couldn’t handle looking this way.

Many of these questions and statements I’ve listed suggest I should be cured of my disability, rejecting it as a part of my identity. But a cure is not possible, and why should I want one? As I wrote in Say Hello,  I’d like a cure for people’s ableism.

Before you go to make a well intentioned comment or ask a curious question of a disabled person (or who has a facial difference or skin condition), stop. Consider whether you’d like to be asked it. Consider how many times they’ve had this interaction before. Consider how helpful it is to you. And realise that these questions and statements are deeply entrenched ableism, and your discomfort with disability. Because ultimately, disability is seen as a tragedy.

But it’s not. It’s part of the human condition and anyone at anytime could become disabled.

Check your unconscious bias. Rethink your well-meaningness.

Your curiosity and discomfort isn’t my burden.

Has this post helped you or made you think? Will you use it in your work or school? Please consider buying me a drink! 

You can also buy my book, Say Hello. 

Images:

1. A square with nine alternate purple and pink squares within, separated by white borders. On each square are statements and questions in black text:

What are the chances of you passing your condition on?

Don’t call yourself disabled

God put you on this earth for an reason.

I’ll pray for you.

It could be worse.

Are you contagious?

How would you feel if you didn’t have this condition?

I saw someone like you on TV once.

What did you do to yourself?

CarlyFindlay.com.au is in the centre in white text.

2. A square with nine pink squares within, separated by white borders. On each square are statements and questions in black text: Can you have sex?

I’d kill myself if I looked like you.

What’s your life expectancy?

That’s not a disability.

I don’t even notice your face anymore.

You’re so pretty, considering.

Have you tried…?

Does your partner also have what you have?

My child’s teacher’s mother’s rabbit has the same condition as you.

CarlyFindlay.com.au is in the centre in white text.

Melbourne Fringe VCR Fest – Art x Access: Is digital art here to stay?

On 1 August, I hosted a session at Melbourne Fringe’s VCR Fest – a digital arts festival. It was on art and access. The speakers were AMAZING – Nat’s What I Reckon, Jacci Pillar, Erin Kyan, Laila Thaker and Ricky Buchanan.

We talked about digital art – all panelists are digital artists – and how Covid-19 has made us pivot (or stay the same), how digital art benefits disabled audiences, and what we want to see in the arts post Covid-19.

Nat, Jacci, Laila, Erin and I spoke live, and we used a video recording of Ricky from Platform, as that was most accessible for her.

[image error]





[image error]Images: two screen shots of people on Zoom – Jacci, Carly, Melbourne Fringe, Erin and Nat on the first image – they’re all smiling; and Ricky, Jacci, Laila , Erin, Nat, Paul, Carly, Melbourne Fringe and Karen.

You can watch a closed captioned, Auslan interpreted video here.

You can also listen to a podcast I featured on about accessible art – Arts Hubbub by Arts Hub.

Has my work helped you or made you think? Will you use it in the workplace or at school? Please consider buying me a drink.

Book review: Hearing Maud by Jessica White

Content warning: ableist language and eating disorder

[image error]Image: an iPad on a floral cloth background. The iPad screen has a book on it – Hearing Maud by Jessica White. It features a black and white photo of a woman, side on. The top half of her head is cropped off. “Hearing Maud Jessica White is in gold text. The floral fabric is red, blue, purple and black. It’s a small repetitive print.

I really enjoyed Hearing Maud by Jessica White. It’s an important work of creative fiction – combining a memoir about Jessica’s life, and an insight into Maud Praed, the deaf daughter of 19th century Queensland expatriate novelist Rosa Praed.

Jessica lost her hearing aged four, and as detailed in the book, she considers herself to be raised as hearing. Her parents sent her to a mainstream school and sent her to audiologists and speech pathologists to help her hear and speak. She didn’t know any D/Deaf people as a child, and hadn’t learnt sign language. She wasn’t raised culturally Deaf, which I believe is why she’s used the smaller d variation of deaf. 

Jessica has had a prolific and successful writing career, and has also worked in academia, but she struggled with forming relationships due to communication barriers. She also experienced an eating disorder. 

Jessica details the discrimination that both she and Maud endured. Maud was taught to speak, not sign, and as a result, found communicating very difficult. 

Through her research, Jessica saw parallels between herself and Maud – especially the discrimination they both endured and isolation they felt. While there were centuries between them, some of the discriminatory views about disability have not changed. 

At times there was some uncomfortable disability hierarchy. While some of it was tied to history (stating that “in Roman law, deaf people were placed in the same category as imbeciles”, but she was also othering, with a statement about being “deaf not stupid”.

There was also a little ableist language and allusion to eugenics, when Jessica wrote about deaf history, and the discrimination she and Maud experienced. I feel this use of ableist language is passable as it is describing how the language was discriminatory. Jessica is disabled herself, so she she has the power when writing about ableism (compared to a non disabled writer using disability slurs). 

I related a lot to Jessica’s story – especially her working harder than what’s often healthy to prove myself to non disabled people; her dating woes and desire to be loved unreservedly, and also the way her parents sent her to a mainstream school with few accommodations. I also related to the way writing has changed Jessica’s life. 

There were a few lessons in the importance of complaining about lack of accessibility. One line that stood out to me was “I’m inclined not to bother with complaining because it takes energy, but once an audiologist in London told me, ‘If you complain, you make it easier for the next deaf person who comes after you.’”

One of the loveliest parts of the book was when Jessica reflected on all the friends she had when they came to her second book’s launch, compared to three years prior. Writing has given her so many opportunities and relationships. Hearing Maud is a story of how the written word can lead to self discovery, and also the importance of connection with others – especially other disabled and D/deaf people. 

I listened to the audiobook and enjoyed the narrator. As Jessica wrote so much about her speech, and because this is a memoir, I would loved to have heard her narrate it.

You can buy Hearing Maud here. It comes in paperback, ebook and audiobook. Hearing Maud has been shortlisted for the 2020 National Biography Award, shortlisted for the 2020 Queensland Literary Awards People’s Choice Award and shortlisted for the 2020 Queensland Premier’s Award for a work of State Significance.

Follow Jessica on Twitter, Instagram and Facebook.

My friend Tash and I are doing #DisabilityReads on Instagram, where each month we read a book by a disabled or Deaf writer, and review the books and create discussion on our Instagram accounts. Join in via @Jouljet and @Carlyfindlay.

Has my work helped you or made you think? Are you using it at work or school? Please consider buying me a drink.

Vale Dr James Partridge OBE

Today I read the news that my friend, colleague and mentor, Dr James Partridge OBE died on Sunday. 

[image error]Image: a white man, with blonde hair and a facial difference, sitting down. His elbows are resting on the table (not in frame) and his hands are clasped, facing up. He’s wearing a pink shirt and blue suit jacket. He’s smiling.

I am very sad and shocked. A world without James is a lesser place, but he leaves behind an enormous legacy. I send all my love to James’ family, friends and colleagues. 

James was a pioneer in changing the perception of people with facial differences.

He was also a husband, father, brother and ‘grand dog’. 

James was the founder and CEO of Changing Faces – a UK organisation that supports people who have facial differences and disfigurements, and their families; and provides educative resources to schools, workplaces and media. It also provides guidance and training to advocates. 

James was involved in a car accident when he was 18, which caused extensive burns to his face and body. 

James founded Changing Faces in 1992 – the name of the organisation came from his first memoir. It was ‘the book he wished he could have had to help him through his own recovery’. 

During his time at Changing Faces, James read the midday news on fronted the lunchtime bulletin for a week on Channel 5 in an attempt to try to break down prejudice. 

He and the Changing Faces team also ran a campaign featuring people with facial differences and disfigurements in the London Underground.

He stepped down as Changing Faces CEO in 2017. 

James went on found Face Equality International – an alliance of Non-Governmental Organisations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality’.

In May 2020, James and the Face Equality International team developed an international media standard for reporting on facial differences, and for our inclusion in the media. 

James received many awards, including an OBE in 2002. 

I first came across James and Changing Faces in 2011. I was taken by his work, and we chatted via email until I met him at the Appearance Matters conference and the Changing Faces office in the UK in 2012. 

I read his first book and his articles, and I regularly refer people to Changing Faces’ resources – particularly within the Ichthyosis community. 

We kept in touch online and I had hoped to meet him again at Appearance Matters this year,, but it’s been postponed due to Covid. I had hoped to see him next year. The last  emails we exchanged were about his book,  Face It. Face It is a memoir, a self-help manual and a manifesto for change.

James asked me to write a piece in the book, and also to endorse it. It was an honour to do so. I received it in the mail last month.  I am so sorry I didn’t get a chance to take a photo of me with the book and send it to James sooner. 

[image error]Image: A book on a yellow and white striped cloth, with flowers near the right hand corner of the book. The book is black and white, with yellow text. It featured a white man with a facial difference, smiling. He’s wearing a black top and glasses. “Face It” is in bold yellow text at the top of the cover, and at the bottom is “Facial disfigurement and my fight for face equality” in white text. Below that is “James Partridge” in yellow text.

I had received an early copy of the book in March, and as I read it, I fist pumped so many times. James made so many impactful and relatable statements around how it feels to be discriminated against because of a facial difference, his expectations for the way the media reports on and includes people with facial differences, and also the inclusion of stories from a number of other advocates who have facial differences. 

While reading  Face It, I messaged a friend, who also has a facial difference, telling them about how valuable this book will be. In my endorsement I wrote:

“FACE IT: Facial Disfigurement and My Fight for Face Equality is an excellent resource for people with facial differences, and for people without. James Partridge has used his personal situation to better the world – helping people with facial differences be seen, be accepted, be free from discrimination and love ourselves. This book will change lives – I am all the better for finding James and Changing Faces, and I know readers will feel the same.”

James is a reason I do the work I do.  He has provided me with a wealth of information, knowledge and experience, and invaluable support and friendship. His work helped me understand and articulate my own experiences of having a facial difference. I found James when I was beginning to explore my own relationship to my facial difference and also when I started learning about disability rights and politics. Meeting him made me feel understood.

[image error]image: James and I in 2012 – a selfie of us, smiling. James is a white man with a facial difference, he’s wearing a beige suit and tie. I am a woman with a red face. I’m wearing a pink hat.

More broadly, James has created two brilliant organisations and fostered a movement that has reduced stigma around facial difference, and also that calls out discrimination in the media and on the street. He has mentored leaders in the facial difference movement. He has also created a community – together we are stronger and braver. 

James, I will miss you. Thank you for teaching me so much, and for your friendship. Thank you for working so hard to achieve face equality. You’ve changed the world for me and many, many others.

You can read a tribute to James from Face Equality International here

James’ family have requested for donations in his memory to be made to Face Equality International. Cheques made out to Face Equality International may be sent to: Le petit fief au Bret, Les Aubrets, ,St Martin, GY4 6EX

Things they don’t tell you about being a disability activist

[image error]Image: woman with red face and short dark curly hair, looking serious, wearing a green leaf print jacket over a pink, green, white, purple and yellow floral dress.

It’s Disability Pride month right now. To be honest, I’m not feeling it – I am feeling hurt and exhausted. I (and many others) have been the target of bullying within the disability community/sector for some time now.

For the most part, the bullying towards me has been covert, but in recent months – since I received a certain award – it’s amped up – naming me, sharing my photo, and responding nastily to things I’ve written. It’s all public. 

The bullying has had an impact on my work – I’ve experienced fear to write and speak; and also on my mental health – I’ve had panic attacks.

Speaking up has cost me greatly – people disbelieving me, telling me I’m paranoid,reporting my actions back to the bullies. If you support this bullying, we are not friends.

I’m not running any hate campaign. I am simply sharing my experience since 2017, to make it public and share the burden. And I am asking for it to stop. 

I hope to write something more prideful soon.

This is when I came out as a person of colour

I’ve recently been accused of appropriating my disability and race.

That I just “came out“ as a person of colour.

This is when I came out as a person of colour – born with Ichthyosis. December 1981.

[image error]Image: vintage photo of my mum holding me as a newborn.

If you’re interested in my family and race, you can read my story in Growing Up African in Australia – published in 2019. Maxine Beneba Clarke asked me to contribute a story, and I did so with the support of my agents Jacinta Di Mase and Danielle Binks, and of course my Mum.

I was also shortlisted in The Horne Prize in 2019 for a personal and political story on disability and migration. It hasn’t been published yet but I’d love to find a home for it.

I also wrote this piece very recently – it looks at the intersection of race, appearance diversity and disability, and how I’ve been assumed to be white. It also details my journey to seeing my race as part of my identity. It had a fantastic response and I have been encouraged to write more on this topic.

And I wrote about my family and my race in my memoir Say Hello.

I didn’t always call myself a woman of colour – even though I’m mixed race – but now I do. Just as I didn’t always identify as disabled – even though I was born with ichthyosis. Identity evolves when we understand ourselves better.

And yes, I also have a writing, speaking, activism and arts career that pays me a wage, allowing me to live my best life. I am not apologising.

Nobody will deny me of my identity and family history.

PS: how beautiful is my Mum? If you’re not following her on Twitter, what are you doing with your life?!

If my work has helped you or made you think, or if you use it in my work, please consider buying me a drink. Thanks.

Book review: Nightingale Point by Luan Goldie

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CW: Disability slur

I read Nightingale Point by Luan Goldie this week, and I can’t stop thinking of it.

Nightingale Point is an incredible book, based on the true story of a plane that hit two public housing towers in Amsterdam, and a tribute to the Grenfell Tower residents in London.

The story began in 1996, and spanned five years. It focused on a number of residents in a public housing tower in England – known as Nightingale Point. It was a story of how their lives changed when a plane hit the tower block, including their recovery. The characters were diverse.

The character development, and interactions were beautiful. I loved the friendship that developed between Tristan and Elvis – the empathy and humanity between them was beautiful.

Nightingale Point had a recurrence of the R word – a harmful disability slur. It was aggressive, and I would ordinarily give up with such ableist language. But my friend told me to stick with it. And wow – I’m glad I did. This is one of the only books I’ve read that addresses the issues of the R word. It’s done in such a great way. Not condescending. Contemplative. Apologetic. A statement was made on the harm the language did – in a 1996 context. Thank you Luan.

Every writer who chooses to use ableist language needs to read this book. You can make a choice to use it, and make a choice to change your characters’ behaviour by writing about the way the R word is harmful. I call out ableism in literature so often that I want to take the time to celebrate when it’s corrected positively. I believe disability slurs cannot be justified in modern writing, and if they’re used, they need to be used as a lesson about why they’re so damaging.

This is such an important book about race, class, disability, trauma, survival, healing and community – a book for our time. Beautiful, empathetic, eye opening, compassionate, well researched.

I listened to the audiobook and loved hearing the different characters come to life by the actors who played them.

Luan is a Scottish-Nigerian writer and I cannot wait for her next book – Homecoming – out in October.

Buy Nightingale Point

Pre-order Homecoming

Follow Luan on Twitter and Instagram

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