Carly Findlay's Blog, page 19
March 15, 2023
HireUp article – Who has the right to talk about the issues facing people with disability?
I co-wrote an article for HireUp, with Lisa Grech, who is a disabled mother of a disabled child. The article is a letter exchange, debating who should be centred in articles about disability issues.
Image: a screen shot from an article on Hire Up. It features text and two photos.Photos are of Carly Findlay and Lisa Grech.
Text reads: “Who has the right to talk about the issues facing people with disability?
15th March 2023
Written by Hireup
Opinion
What started as a Twitter debate sparked by an article on Hireup news has opened up a discussion between disability advocates Carly Findlay and Lisa Grech, a duo with conflicting beliefs on who can share experiences of disability.”
It was an interesting way to make a Twitter debate to more nuanced and respectful. I stand by my beliefs that disabled people should be centred in stories about disability.
Quotes from the article
From me: “For too long stories about disability have been told by non-disabled people. These stories are often tragic, pitiful, inspiration porn, littered with disability euphemisms and over-sharing. They often express grief and regret, which not only harm the disabled subjects of the media and art but also the wider disability community. However, I am seeing more and more non-disabled parents look to disabled adults (and young people) as mentors, to help them understand and shift the narrative to centre disabled people, including their children. It’s heartening, because their disabled children will become disabled adults, and are a part of the disability community.”
From Lisa: “For us, then, the experience of the person with a disability and the parent is shared. It is a different experience to parents of children, including those with disabilities, who gain greater capacity and independence with age. I don’t think there is another person with a disability who is a better representative of my daughter’s experience than me. “Nothing about us without us” is true of the parent-child experience for people with severe intellectual or behavioural disabilities. My situation isn’t unique, it is common to the many parents who are dedicated to their children with severe disabilities, who love and gain immense joy (and experience many challenges) from their parental role.”
Read the whole piece on HireUp
I’ve written on this topic before – specifically about parents over-sharing about their child’s disability. Read that article on the Sydney Morning Herald website.
February 8, 2023
On micro-aggressions – being seated facing the wall
Micro-aggressions look like this when you have a facial difference:
Being seated at the back of a restaurant, facing the wall, so you don’t scare other diners. (I sat facing the diners in defiance.)
We deserve to be seen, we deserve not to be hidden away.
In more inclusive news, two people stopped me to chat about my work on You Can’t Ask That and The Cook Up while I was in Sydney; and lots of people chatted to me at the Darren Hayes concert 
Back to the micro-aggression –
Of course the motives of these incidences are hard to prove, hard to call out, and even harder to spot if you haven’t got a facial difference. If I raised it with the person who excluded me, I’m sure they’d react defensively, denying it.
I talked to a friend about it, a friend who has a facial difference. They recognised it immediately. The cumulative impact of micro-aggressions is exhausting, and can interrupt a great time. Of course, out of all the brilliant interactions I had on Tuesday, I’m thinking of this.
Anyway, if you work in customer service; if you prioritise customers with beauty privilege; if you think people like me will detract from the image of your store or restaurant – check your bias. Why is it that you’re deprioritising people with facial differences and disabled people?
Fortunately, in recent years, I have encountered this type of micro-aggression less. I supposed it’s because of my public profile, and I’m thankful and relieved that mine and others’ advocacy has helped make attitudes and behaviours more inclusive. But I still experience it.
I measure ableism by the way I (and other disabled people) are treated compared to the customers before and after me. If they are looked at, spoken to and offered service, and I am not offered that same service, it’s ableism.
It’s not hard to be inclusive and show respect.
When I talk about experiencing micro-aggressions like these, the reactions are often “maybe you’re over-reacting” or “you’re overthinking it” or “they were probably having a bad day”. If you’re playing devil’s advocate by disbelieving what happens, check your bias too.
Image: a plate of food at a seafood restaurant. The plate is black, there are mussels, oysters, a prawn, octopus and smoked salmon.
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February 6, 2023
Darren Hayes live at Sidney Myer Music Bowl, Melbourne – 4 February 2023
My most fave thing of Saturday night’s Darren Hayes concert? How happy he was to perform. Glorious. Joyous. Generous 
Images: six photos of Darren Hayes – a white male singer with brown curly hair – on stage. In the photos he is smiling, singing, standing with his arms above his head. The stage is lit multiple colours.Big smile, bouncing curls, so energetic. He was as excited to be there as we were in the audience. It’s so wonderful to see someone I love so much look completely at ease and in their element.
Darren performed so many classics – it was 1997-2000 nostalgia. (My body is not like it was then, though. So sore and tired today.) He really is one of Australia’s best singer songwriters. That voice. Those lyrics that have comforted me for more than half of my life.
The band was brilliant too – featuring Karl Lewis and Lee Novak from the original Savage Garden band; plus Trevor Yasuda on guitar; and backing vocals and dancing from Sharon Muscat; Madeleine Coghlan and Virna Sanzone.
My highlights were: I Want You, To the Moon and Back, Crash and Burn, Two Beds and a Coffee Machine, I Don’t Know You Anymore, Dublin Sky, Casey, and All You Pretty Things.
We were lucky to get tickets to the soundcheck too, where Darren rehearsed two songs and answered fans’ questions. It was lovely.
I went with one of my closest friends, Linda, and we saw old friends and made new friends there too.
Thank you for playing, Darren. I’m so happy you’re happy. See you again in Sydney.
Some videos from the concert are here, snippets for Twitter.
Classic @darrenhayes. Just adored how relaxed he looked performing this song. Again, lyrical & musical perfection.
— Carly Findlay OAM (she/her) (@carlyfindlay) February 6, 2023
This video was taken by my friend Linda. I took a video too, but mine doesn't show the whole stage.
Vid: Darren singing To The Moon and Back on blue lit stage. pic.twitter.com/lCR75Y3tKQ
All you pretty things
— Carly Findlay OAM (she/her) (@carlyfindlay) February 6, 2023@darrenhayes at Sidney Myer Music Bowl @artscentremelb.
A fave from Homosexual.
Video: Darren Hayes wearing black, singing and dancing on a stage. Light changes from purple to pink to blue. He walks to sing near his band. pic.twitter.com/zPMVYBg3BU
This was my fave part of Saturday's @darrenhayes concert. Dublin Sky – one of my fave songs – lyrically and sonically perfect. I'm so lucky to have seen this
— Carly Findlay OAM (she/her) (@carlyfindlay) February 6, 2023
Video: Darren Hayes singing a ballad with band on stage, it's backlit orange. Lyrics in next tweet. pic.twitter.com/8y0xl2HkKX
January 24, 2023
Doja Cat’s Schiaparelli fashion show costume mimics people with facial differences and skin conditions
Today, Doja Cat, a singer, attended the Haute Couture Week dressed in red paint, a red dress and 30,000 sequins.
“The singer’s arrival at the Petit Palais in Paris marked a dramatic start to Schiaparelli’s Couture Spring-Summer 2023 show, the opening event of the biannual Haute Couture Week in Paris. Dubbed “Inferno Couture,” the label’s latest collection was inspired by Dante’s “Inferno” and the nine circles of hell, according to Roseberry’s show notes.”
I have many feelings about Doja Cat’s outfit for the Schiaparelli fashion show – mostly that it mimics people with skin conditions and facial differences. People like me.
“Don’t be so offended, Carly”, I’m sure you’ll think and even say. “It’s just a costume.”
I know it’s fancy dress. It is a work of art. It’s meant to be fun and avant garde. But representation matters. I feel this is akin to scary face/cripping up at Halloween.
So many people who do have red, scaly skin (like this emulates, intentionally or not) are mocked, stared at, discriminated against. ridiculed, feared. refused service, excluded, erased. Hell, we are rarely invited to fashion events like these, nor do we regularly appear in fashion magazines (or are written about respectfully in the media).
And yet, this is fashion. A costume she can take off at the end of the event.
Those of us with skin conditions and facial differences don’t have the luxury. We don’t have the privilege of peeling off a costume and avoiding discrimination the next day. Many people with skin conditions and facial differences feel shame and embarrassment, and desperately want to change our appearances – to look less like this. Many won’t go out in public or appear in photographs.
I hope, following this event, Doja Cat advocates for people with skin conditions – specifically those of us with red scaly skin. And I hope the journalists and social media commentators are considering how having a laugh at Doja Cat’s costume hurts people who have facial differences and skin conditions.
More about Doja Cat’s outfit on CNN:
“Doja Cat wowed onlookers on Monday as she arrived at Schiaparelli’s latest runway show in a dramatic head-to-toe look adorned with red body paint and 30,000 Swarovski crystals.
The eye-catching outfit, which was custom-designed by the fashion house’s creative director Daniel Roseberry, was brought to life by makeup artist Pat McGrath, whose team spent almost five hours completing the look.”
More on Halloween costumes that mimic facial difference (also apples to year round costumes) from Face Equality International:
:
Why is Halloween difficult for the facial difference community?
Image: A woman covered in 30,000 red crystals – over her face and body. She wears a red dress.
Images: 1. Doja Cat – a woman covered in 30,000 red crystals – over her face and body. She wears a red dress. 2. A collage of two photos side by side. On the left is Carly Findlay, who has red skin due to a skin condition called ichthyosis. On the right is Doja Cat, in the red crystals, red paint and red dress.
My memoir, Say Hello, turns four!
The other anniversary today is the release of my memoir – Say Hello. It turns four!
We had a big event at The Wheeler Centre – a venue that has been central to my writing career. Kevin Mitchell (Bob Evans) hosted it. Over 200 people were there. This event marked the start of a whirlwind book tour where I traveled around the country and to Indonesia, talking about the book at events and to media, and meeting some wonderful people. No work week was the same! What a year!
The Melbourne launch was on a very hot night – 45 degrees. In an unglamorous moment between signing books and getting on stage, I lay on the toilet floor at the venue to cool down , because I was overheating (ichthyosis means my body doesn’t regulate its temperature). I had a fan (written on it was “so fucking cool) and my agent brought me an ice pack while I was on stage.
When Say Hello was launched into the world, I didn’t know the impact it would have. While writing it, I was struck with anxiety – I thought it was going to fail. I wanted to hand back the advance. Lucky, with the reassurance of many, I persisted.
What a privilege it is when doctors and nurses tell me they use it in their work and refer it to dermatology patients. I love that it’s on the reading list of some university courses. And I adore hearing from readers – not just in Australia but around the world. I love hearing how Say Hello has helped you.
Say Hello is available in paperback, ebook, audiobook (narrated by me) around the world – see this page for more info on where to purchase it. It is available in Australian libraries too. A big thanks to Catherine Milne, Nicola Robinson, Lara Wallace and the team at HarperCollins; my agents Jacinta Di Mase and Danielle Binks; Writers Victoria and The Wheeler Centre; bookshops, libraries and festivals for organising events; to Haben Girma whose request for accessibility helped get the book in all formats around the world; to the media who got behind me; and to readers who have bought, borrowed, read and recommended Say Hello. You’re so appreciated.
Watch the Melbourne launch here:
Images: 10 photos from the Say Hello book launch – me with various people and my book.
Twenty years in Melbourne today!
Today marks 20 years since I moved to Melbourne!
I came here as a very young 21 year old, wide eyed, ready for a job in the Australian Public Service graduate program. At the time, I had to choose between two jobs – one in Canberra and one in Melbourne. I chose Melbourne as I had Silverchair tickets in Melbourne the following April, and I worried if I worked in Canberra, I’d miss out on the concert! True. I moved into a tiny house in the inner west, and this city soon became my new home. I have wandered through galleries, attended various cultural festivals (and I work at one!), enjoyed countless concerts and go to my favourite restaurants regularly. I still don’t follow the football. I have made some incredible friends that I’m very grateful for.
Lots has changed since I came to live here – I completed my Masters degree; moved on from the APS; I got married; published two books and have written for several more; appeared on TV; written for national and international news outlets; put on a fashion parade; was awarded an Order of Australia; learnt; gone through some difficult times; grown and hopefully become a better person. I’ve travelled overseas a few times; survived a pandemic; become creative with fashion and colour; and helped create some wonderful communities online and IRL. I found my disability identity.
I am so happy to still call Melbourne my home – though in hindsight, the one thing I wish I could redo is living at home with my parents a little longer when I started working full time – so I could have more easily saved a deposit for a house. That aside, I don’t think I’d have this career, confidence and independence if I stayed in a small town for longer. I do know I can always go home – to my other home. How lucky I am.
Happy 20 years, Melbourne – I’m happy I chose you. Thanks for enriching me & connecting me with the best people.
Image: a woman with a red face, short dark curly hair, standing on a balcony with trees near her. She’s wearing a blue, peach and pink floral dress, pink and silver shoes and a 3D rose jacket over her dress. She’s standing side on, smiling. A peach circle with “20 years in Melbourne!” Is next to her.
January 19, 2023
Meeting Darren Hayes – a little brooch gifting, a lot of fangirling
Tonight I was in the audience of The Project, especially to see Darren Hayes on the desk.
(For those who might not have known me for long, I’m a Darren Hayes super fan – he was the singer of Savage Garden and now has a solo career. He’s touring soon. I’ve been a fan since I was 14, and now I’m 41.)
In a recent Instagram live, Darren said that he’s into brooches, and he has commented on some of mine in photos. So I set out to collect a few brooches for him – some of which relate to his music, his dog and also one of the brooches of mine that he admired. I gave the gift to The Project staff to pass on.
When I met him briefly with his other fans tonight, he thanked me for the gift and pointed to his jacket. He was wearing the dog brooch – I said it’s Hux in a Tux. We had a selfie, I told him I loved him, thanked him for always making me feel special, he squeezed my hand, and it was amazing.
I attached a brooch explainer to the card I gave him – some of what I wrote:
Bobbi Frances dog brooch – he looks like your Huxley.
Curious Carousel ‘Beehive in Bloom’ honeycomb brooch – because you liked my honeycomb brooch.
Erstwilder ‘One in one thousand’ crane brooch – reminded me of This Delicate Thing We Made.
Erstwilder ‘Siren’s Call’ mermaid pin – my fave song from Secret Codes and Battleships is The Siren’s Call.
Haus of Dizzy ‘Fuck the patriarchy’ pin – a theme in your press for Homosexual. (Haus of Dizzy is an Aboriginal maker.)
Pins by Suri pride flower pin – because love is love.
I know that seeing him live in the studio the brief meeting tonight will have me on cloud nine for a while now. So so happy
Thank you Darren for coming home, for making new music and for the upcoming tour. And thank you for making time for your fans.
Images: 1. A selfie of Darren Hayes and Carly Findlay – both wearing interesting brooches and dapper jackets, and masks. 2. A gift box with a lot of brooches in it.
January 16, 2023
Talking with Imani Barbarin for Alter State
Image: a screen shot of Imani Barbarin and Carly Findlay doing a Zoom recording. They’re both wearing orange; both smiling.In October 2022, I had the pleasure of chatting to Imani Barbarin, a Black American Disabled woman, about disability activism and art. I have been online friends with Imanin for many years – she is regarded as Hashtag Queen.
We talked about disability activism and art, and what it’s like to occupy the world (specifically online) as loud and proud disabled women of colour. Imani has hundreds of thousands of social media followers, and she has a book coming out soon. She is incredible. I was totally fangirling during this interview – I am so lucky to do the work I do.
Enjoy this chat – it’s captioned.
More info on Imani:
Imani’s website
This conversation was supported by APAM, and was part of Alter State at Arts Centre Melbourne
(I have been working with Alter State).
Disability joy – rollerskating with Rodney Bell
Carly and Rodney – Carly is rollerskating, Rodney is in his wheelchair, they are both smiling, and reaching into the air, touching hands. I experienced pure joy on Saturday 8 October! Rodney Bell – Māori and Disabled dancer – came skating with me. He choreographed a short dance – I managed it, even with how little rhythm and coordination I have. It was so fun!
Still can’t stop smiling when I think of this, and watch the videos back.
Thank you Rodney for spending time with me; and to Colleen for filming and having fun with us.
We joked that this is the start of our next Arts Centre Melbourne Alter State performance!
Video: Carly and Rodney on the forecourt of Melbourne Museum. The sun is out, sky is blue. Rodney, a wheelchair user, is dancing around Carly, on skates. They are smiling, moving together and apart, holding hands at times. They hug at the end. The music is Darren Hayes – “all you pretty things”. Lyrics are: “And just for one night
View this post on InstagramA post shared by Carly Findlay OAM (@carlyfindlay)
The world’s heartache seemed to disappear
Under strobe lights
Everyone is beautiful in here
So never forget
And never give up
But don’t ever stop
Keep dancing the pain away
Don’t let the past
Steal from today
As long as we’ve got our memories love remains
We’ve got to
Dance to remember them…”
The cover photo is Carly and Rodney next to each other – smiling, arms stretched out.
(A second video is here.)
Fiona Patten mentions Face Equality in Victorian Parliament – May 2022
Image: a selfie of Fiona Patten and Carly Findlay, smiling. In May 2022, at the start of Face Equality Week, I happened to see Fiona Patten MP at a work function. (Fiona has recently finished working as an MP.) She mentioned to Melbourne Fringe’s CEO, Simon, that she and I had collaborated a few years ago when she introduced the Vilification Bill into Victorian Parliament (I provided a statement for her to speak on, and it was mentioned in the media in 2019).
In short, disabled people and people with facial differences are not protected against hate speech, and this needs to change.
When I saw Fiona, I mentioned that it’s Face Equality Week, and that the theme is “Face Equality is a Human Right”. I connected her with Phyllida SwI ft CEO of @face equality i and today Fiona spoke about me and the Face Equality report in Victorian Parliament. This is hugely validating. Reporting hate speech and discrimination is so often dismissed – I can’t tell you the amount of times a taxi company or other orgs or individuals have said they are sorry for my experience but they cannot take action.
The impacts of discrimination on those of us with facial differences are immensely exhausting and upsetting, and so to see some progress being made in the human rights law space is wonderful. We need this Bill to be passed now. Thank you for your allyship and drive for change, Fiona and team.
The Face Equality report is here.
From Fiona: “Carly Findlay OAM lives with a rare severe skin condition called Ichthyosis, which causes her to have a facial difference.
She experiences constant discrimination, stigma and hate speech. Worse still — she’s come to expect it.
She and so many others with a disability are not protected by current anti-vilification laws, which is a huge reason why I introduced a Bill in 2019 to expand the number of protected attributes. A parliamentary inquiry has since recommended it.
I urge the Victorian Government need to get moving on these reforms as soon as possible.”
Video: Fiona Patten, a Victorian MP, talking in Parliament. She is a white woman and has shoulder length blonde hair, and is wearing a black suit and white shirt. There is a photo of Fiona and Carly at the start of the video. The video is captioned.
