Carly Findlay's Blog, page 24

This latest flare

Image: a hand with its palm facing upward, resting on a table. The skin on the palm is cracked and red near the thumb. A blue sleeve is also visible.

 

I don’t often show the physical manifestation of ichthyosis. I never want to perpetuate voyeurism or be a pitiful teaching moment. I also feel that showing just a body part in pain harks back to the times I was involved in medical photography – where I was in a cold hospital room in the basement, having my photos taken. I suspect photos of me – with my eyes blacked out – are in a medical journal somewhere. I don’t ever want to be a de-identified patient – and that is why I include my face in so many photos.

But I also grapple with the concept of passing (not looking as sore as I feel); and also curating quite an active life on social media. I realise I could be inadvertently showing some kind of super disabled life by never showing my vulnerabilities. (And neither of those are untruthful – I often don’t look as sore as I feel, and I do fit a lot into my days.)

Right now my body is very sore. I’m on preventative antibiotics, have salt baths and take more Panadol than usual. I think my feet are about to go through a shed and renewal – which doesn’t happen a lot now, but when it does, it’s very sore. I’ve referred to it as Ecdysis – when reptiles shed their skin.

My hands are shedding slowly too. They look like this. They’re quite sore. It’s hard to hold hot cups, and also grip onto things. I went rollerskating earlier and my wrist pads irritate a little. But still, I wanted to skate and have fun with my friends.

I suspect my hands are sore from using sanitiser, and also being out in the world again, but who knows? This is the unpredictable nature of ichthyosis.

I’ll be back on track soon – I’m grateful for the long weekend to have some rest, and also to still be able to have some gentle fun.

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Book review – Raceless by Georgina Lawton

Spoilers ahead

 

Image: a book cover next to a photo of a Black woman. The book cover is yellow and has “RACELESS” written six times in red text, words stacked vertically. The words fade as they reach the bottom of the cover. The woman is young with long black curly hair and dark eyes – she’s smiling. She’s wearing a white top and a round silver pendant.

Raceless is one of those books that I didn’t want to put down, but I also didn’t want it to end.

I was engrossed. 

A memoir by British woman. Georgina Lawton, Raceless is about the identity crisis of being born Black into a white family. Her mother had an affair with a Black man. Georgina was raised white. Her blackness was never discussed – and it wasn’t until after her father died of cancer that she probed her racial history.

Georgina’s mother’s affair was never addressed until after her father’s death. Her father never questioned it, her mother never explained it, and her wider family never provoked the topic. Through counseling, she finally interrogated her mother – which revealed a great sense of shame and catholic guilt.

The book has a great insight into Black women’s hair, as well as the Vietnamese wig industry. It also explores the way ancestry websites take advantage of minority groups. It was also alarming to read just how many children are kept from knowing about their racial identity – and also the impacts it has on them. And the concept of micro aggressions was outlined so well.

I also related to the book a little. My mum is black and my dad is white. But I have a rare severe skin condition called ichthyosis – which makes my skin red. I look more like others with ichthyosis than I do my parents. I was raised in Australia, with some contact with my mum’s South African friends, but mostly exposed to white people.

Georgina wrote that she was “slightly overwhelmed to say the least, and very wary of appropriating an identity that was not mine to have.” I wrote about this very thing in both Say Hello and Growing Up African in Australia.
It’s only recently I’ve explored my race, because my skin condition took a lot of space in my mind. Georgina wrote of a man she met – Chrissie who had vitiligo. His skin colour changed due to the skin condition, and he questioned his identity a lot. I found myself nodding along when reading much of the book – especially in this part, and also where the topic of looking past skin colour was covered.

Georgina wrote a lot about her mother’s shame – and the impact it had on her. She wrote that some British people have the tendency to avoid addressing difference – and I thought back to some of the ways I’ve been made to feel shame because my difference has not been addressed – due to people not seeing colour.

Raceless is a really important read – especially for people who are mixed raced, and for everyone else actively working on anti racism. It’s beautiful, vulnerable, truthful writing. I want to read everything Georgina has written.

There is a lot of trauma and shame in Raceless. I hope Georgina repairs things with her mum, and I’m deeply sorry for Georgina’s loss of her father. But there’s also so much hope and education  – hope that other mixed race children will not be denied of their race and racial identity; and that the notion of not seeing colour is in fact perpetuating racism. 

I listened to the audiobook and Georgina narrated it beautifully. I’ll be thinking about this book for a long time.

Five stars. 

Details of where to find Raceless in Australia are here.

 

Say the words

Image: a black square with gold writing on it. “Disability/Disabled” is in the top row. “Say the words.” Are spaced out below. CarlyFindlay.Com.au is below.

I wonder when non disabled people will stop asking disabled people why we use the terms “disabled” and “disability”, and correcting us – like they’re words to be ashamed of. It is not ok to tell marginalised people the words we use for ourselves should be changed.

I’m seeing this with Growing Up Disabled in Australia media and events. Stop.

The conversation needs to move beyond this. Especially when it doesn’t seem to be happening to other diverse groups. And especially when there are bigger issues to worry about – like inaccessibility, segregation in schools, unemployment, abuse, and a global pandemic!

And really, allies need to do better to respect the words we use for ourselves.

If we (actually disabled people) use the terms “disabled person” or “person with disability”, or take back a slur word for ourselves, or don’t use a label at all, our choices should be respected.

In the media kit I created for reporting on #GUDIA, I stated:

“Disability and disabled are not bad words. You can write or say “people with disability” or “disabled people”.

Stigma is created when euphemisms …are used. Say the words.”

From some of the questions by media & at events, people think the term “disabled” in the book’s title will put off readers. That it’s offensive. (It’s not.)

Anyway, I also wrote in the contributors’ kit that responding to negative reviews is not a great idea, so I’ll stop now!

Actually – one last thing.

Can you imagine if your identity was debated & dismissed each time you had an interview or did an event. Especially when you’ve had a journey to feel comfortable with this identity.

No? It seems rude, hey?

Well please don’t do this to disabled people.

(This isn’t a new thing by the way. I encounter it in most disability and accessibility work I do, as do many other disabled people.)

PS: the book’s title has been debated from the day we called for contributors (sigh!). But it is doing just fine with the title! It’s gone to reprint!

PPS: this isn’t an opening for non disabled people to tell me how uncomfortable and offended they are by the words “Disability” and “disabled”, thanks.

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

Personal leave

Image: Woman with a red face and short dark curly hair tied back, wearing a purple and orange patterned shirt dress. She’s standing at the front of the State Library of Victoria, learning on a pillar, hands clasped, smiling. Photo by Aaron Francis.

I had a sick day on Monday.

But twenty two years in the workforce, and I still can’t shake the guilt.

That morning I was texting with my manager about possibly rescheduling a meeting, and I admitted to still having guilt.

It definitely started from having parents who placed big emphasis on a strong work ethic; and not being treated any different because of my disability. I am glad for the values they instilled but it has led to placing enormous pressure on myself.

I also worked in the public service , and many years ago – and my colleague asked, “who’s going to do your work when you’re in hospital, Carly?” I won’t ever forget.

Of course this external ableism leads to internal ableism.

Who’s going to do my job when I’m away? Why did I *look* ok on the weekend/in my freelance work, but not well enough to work today? I shouldn’t have gone to dinner last night if I can’t front up at work today. Surely I can just work through the pain. Maybe I’ll feel better when I get up and shower? I’ve been sorer, it’s not that bad.

I constantly have to prove myself – in a state of overachieving.

I’ve done job applications from hospital and also interviews. I push myself to ridiculous levels, and I know that so many other disabled and chronically ill people do this too. My best friend used to work from the hospital frequently, despite her incredibly understanding and compassionate workplace.

(One thing about working half salaried and half freelance is that I don’t have to do 9-5 x five days a week, and I really like this.)

Disabled and chronically ill people are forever proving our worth in the workplace, despite loyalty, productivity and lower sick days.

Anyway, while texting my manager about my guilt that morning, he said he understood, and also suggested to reframe the “sick” day as a “personal” day – which is what it is in our HR system. And that really shifted my thinking.

While I called in to an hour meeting because I wanted to, I also managed to relax (apart from when Adam called me three times to see what takeaway order I wanted but I was napping!).

Maybe you’ve experienced this too. And maybe this post helps you

PS: the only non genuine sick day I’ve had was in 2007 when I booked a doctors appointment on the same day as a Darren Hayes concert.

 

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

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On Valentine’s Day

Image: a selfie of a woman with a red face and shoulder length dark curly hair, wearing a colourful dress and coral coloured flower necklace. Shes got pink lipstick on. She’s smiling.

A reminder this Valentine’s Day:

Loving your disabled self is a powerful act of defiance and resistance.

We’ve been conditioned to feel we are unlovable since the doctor said “I’m sorry” to our parents – or us – as they delivered the diagnosis. Disability is seen as the worst outcome – only, it’s not.

Medical photography never captures joy – only fear. The experience is cold and clinical, and your bodies are dismembered by way of cropping and inclusion in a medical journal.

It’s hard to feel confident when you’re asked intrusive questions, told ableist statements and you face ableism day after day after day.

And when the lives of people like you are only ever portrayed as a tragedy or an inspiration, rather than ordinary, you come to believe that’s true.

The heavy shame and stigma put on disabled people can be hard to shake off. But it’s possible.

Being happy with your body and mind is not something that’s expected of disabled people. We must work hard at happiness.

Curate a world where you fit. Find others who look like you – or who experience the same barriers as you. This can he on social media, through books, posters on your wall and online and IRL connections. Your outlook on disability will change, I promise.

Show yourself love by knowing that resting is productive, not pressuring yourself to conform to a non disabled world, speaking nicely about yourself, cutting those toxic people out of your life. If a “friend” is trying to sell you essential oils to “cure” your disability, they’re not a friend.

Put on your favourite music or film, have a hot bath or shower, dress fabulously – or not at all – and snap some selfies that show how beautiful you are.

Your disabled body and mind deserves to take up space and be seen and celebrated in this world. Every day.

You are worthy of love – by others and especially by yourself.

Happy Valentine’s Day, my loves.

Picking my battles

Image Woman with red face and short dark curly hair wearing a colorful floral dress, a pink flower necklace, sunglasses and blue sandals, standing next to a Uoo Uoo at Arts Centre Melbourne. The Uoo Uoo is like a large wombat, it’s blue checked.

This  photo was taken just after I did The Drum on ABC TV. I was there to talk about my news book, Growing Up Disabled in Australia, on Wednesday night. It’s on ABC iView and The Drum’s Facebook page. 

Live TV is stressful. (To clarify – The Drum is recorded live, beginning at 5.00 pm, and then it goes to air immediately after the recording ends, at 6.00 pm.) There’s a lot of pre show briefings, thinking on your feet, and also listening carefully to what the other panelists say (there’s no video feed to the Melbourne studio).

While I’m smiling here, I was not as calm as I looked. I had an access issue when I arrived, and I couldn’t stop thinking about it through the interview (I had mentioned it when I explained the social model of disability – where barriers are more disabling than our bodies) and afterward. (I am not going into it here – it’s been addressed and I received an apology – but I did tweet about it, if you’re looking for more info.)

It can be really hard to do my work and encounter access barriers and ableism – even more ironic when that’s one of the things I’m there to talk about. It’s always a risk raising the issue – do I stay quiet or not? It can be even harder when media opportunities don’t come by all that often, and there’s a fear of never being asked back because I’ll be deemed as difficult. We all know how that turned out after a 2018 radio interview where the host said my face wouldn’t be good at Halloween, among other things, and I spoke up in the media afterward. I wasn’t invited back for 10 months.

And it can also be difficult to ask for accessibility – because often we are made to feel we are asking too much; and our accessibility needs are so often not met why go to the trouble of asking and being disappointed again?

We are deemed as divas, have high expectations, asking too much; and it’s said we are playing the victim when we speak out if our needs are met or we are let down by discrimination.

Disabled people are really good at masking (I’m borrowing that term which I see a lot used by autistic people) – masking the pain and barriers we experience; some traits of our impairments that non disabled people often discriminate against; remaining silent about ableism and inaccessibility; and also minimising our experiences of being discriminated against. It’s really hard , tedious work, on top of being disabled.

When disabled people speak up about access barriers, ableism and discrimination, I know it can be uncomfortable to hear. No one wants to be told they’ve made it hard for someone else. Sometimes no one is at fault. But I ask you to please consider how many times we’ve encountered this before; and how much emotion and risk we expend in addressing it.

Has this post helped you? Please consider buying me a drink. 

Come from Away the Musical – the return of musical theatre in Melbourne!

#Gifted post

Last night I was invited to Come from Away The Musical at Comedy Theatre.

Last night’s performance was the first musical to open in Melbourne since March last year.

At the start of the performance, the Associate Director and Associate Writer gave a brief speech – saying there were five productions of Come From Away around the world, which had all ceased in days of each other last March. The writers have clocks on the wall set at different time zones – each from the countries of performance. They have recently just put the Melbourne, Australia time back up. They also thanked Melbournians for looking after each other through 105 days of lockdown, so we could come together again.

I had tears in my eyes then, and also when the audience cheered – several times.

The theatre wasn’t full. But the sounds of the clapping, cheering audience was resonant. Enormous. It was hard to imagine that we’d experience events like large scale live theatre again. But we can, and I’m so grateful.

Come from Away is based on a true story about the tiny town of Gander, in Newfoundland, Canada, who was the landing place for 38 planes that were diverted on 11 September 2001. It is a story of community, generosity and navigating the unknown, with brilliant dialogue, songs and music. The cast is wonderful.

This was my second time seeing Come From Away Australia – the first in July 2019. Of course I loved this just as much as last time, but this time had extra meaning. The themes are so fitting for now – especially the need to look after strangers. I had tears at several parts of the show, feeling very moved by the ordeal of those passengers who had “come from away” as well as the town’s generous spirit; but mostly for the reality of being able to do what we love again – thanks to Melbournians working so hard to get us here.

 

Today I’ve been listening to the soundtrack and also the audiobook about the true story. Obsessed!

Come from Away is now playing at the Comedy Theatre. Covid safe measures are being taken – social distancing, digital check in for contact tracing, and we were given complimentary Come from Away masks last night! An #Auslan interpreted show is on 13 February! The musical is also opening in Brisbane in March and Sydney in June. Details on the Come from Away Australia website. 

Thanks for having us, Come From Away! It was a delight! 

Images:

1. Woman with a red face and short dark curly hair wearing a floral dress and floral mask, standing in front of a large Come from Away banner – it’s blue with a yellow world map.
2. The inside of the Comedy Theatre the building is beige with blue lights.
3. Woman with a red face and short dark curly hair wearing a floral dress and floral mask, standing in front of a backlit Come from away sign outside the theatre
4. The stage inside the theatre. It has chairs and logs on it
5. Two women standing in front of the Come from Away banner – wearing masks.

Book review: World of Wonders: In Praise of Fireflies, Whale Sharks, and Other Astonishments by Aimee Nezhukumatathil

Image: a beige book called World of Wonders by Aimee Nezhukumatathil. Around the text are colourful illustrations of flowers, plants and animals.

I have just finished the most amazing book. 

World of Wonders: In Praise of Fireflies, Whale Sharks, and Other Astonishments by Aimee Nezhukumatathil is a stunning nature memoir.

It covers Aimee’s life from childhood and young adulthood; and her life as a married mother of two, as well as her parents at various stages of their lives. Themes of racism, colourism and feminism are also touched on. It intertwines nature writing with memoir – each chapter linking a plant or animal to Aimee’s life experience. Aimee is an American born woman of colour – her mother is Filipino and her father is South Indian.

My favourite chapters were:

Catalpa tree –  where Aimee writes about her sister and her visiting her mother at a hospital after school – her mother worked as doctor, and the hospital’s grounds were shaded by Catalpa trees. The way she looks up to her accomplished mother was beautiful; and I see this balance of work accomplishments and motherhood carried on in Aimee’s life as an academic and writer and mother.
Calendars Poetica – minutiae of Aimee’s first year as a mother and a writer, living in New York.
Corpse Flower – Aimee writes so vividly about the smell, appearance, feel and temperature of the Corpse Flower.
Flamingo – which talks about Aimee and her university friends dancing at nightclubs; violent and predatory men, as well as the brutal murder of a flamingo at a zoo.
Questions While Searching for Birds with My Half-White Sons, Aged Six and Nine – as the chapter title suggests, this chapter lists the curious questions Aimee’s sons have asked her during bird searching. They range from questions about the birds, to worldly questions about scary school lockdowns  and racism.
Superb Bird of Paradise – where Aimee writes about the male bird of paradise “clearing the dance floor” and also writes of her own wedding, which was a sea of saris. She writes about the Macarena bringing the guests together.
Southern Cassowary – which references Cassowaries in Australia.

But honestly, all chapters are incredible. She has an innate ability to describe nature in a way that makes you as a reader feel you’re there watching the plant grow, or looking at an animal in a zoo or aquarium or in the wild.  It’s so poetic and clever.

I’ve been reading it for a month or so – can’t bring myself to rush it as I want to savour it. I didn’t want it to end.

I listened to the audiobook, read by Aimee. She has a beautiful voice. I have bought the hardcopy of the book as I want to flick through it for the illustrations by Fumi Nakamura, and to read again.

This book is what we need right now. It is so beautiful and hopeful – a reminder of love, family, renewal and purpose – all with the central theme of taking joy from nature.

Australian readers can buy World of Wonders at Booktopia. The Avid Reader and also Audible. Aimee is on Twitter and Instagram. 

2020 – what the hell was that?!

2020. What the hell was that?

It went slow and fast and was a real rollercoaster. I missed so much. We all did.  Reflecting on the year that was can be hard – have you achieved everything you set out to? Maybe not. But you got through – you survived a year like no other – and that is a huge achievement. 

As I write this, Covid cases are increasing again, throwing so many plans into disarray. I’m thinking of everyone who feels stressed, sad and scared now.  It’s really shit. 

The year started grimly – it felt like half of Australia was on fire. Scenes of families fleeing their homes juxtapositioned next to Sydney’s fireworks devastated me. I wondered how some people could celebrate when so many others had lost everything. 

At the start of the year, my calendar was full with work engagements. I had planned to save for a deposit on our first home with my earnings. I was looking forward to a book launch in June. Lots of travel, including overseas in July. And then, right after speaking at the Sydney Opera House – where the Ruby Princess was docked – everything changed. My calendar was wiped clear. Everyone seemed to be impacted. 

I lost count of how many weeks since my world turned upside down in about July. At last count – on 23 December – I worked almost entirely from home for nine months and one week – apart from four days where I went to someone else’s house to work; and those two hours back in the Melbourne Fringe Office.

For a while all the days of the week were the same – at home, working everyday as I feared I’d never work again. Adam could go out to work while I stayed home and that was hard. I had to stop working every day, and do leisure things on the weekends, for my sanity’s sake. My sleep went out the  window and it’s only just getting on track, nine months later.

And while I’ve been able to carry on life in a changed way through Covid lockdowns, many of my friends have struggled immensely. Disabled people found it really tough with further isolation, a lack of protective equipment, the cessation of essential services like cleaning and NDIS provisions,  and a prevalence of ableist attitudes implying disabled people’s lives aren’t valuable .  Friends have had to uproot their lives to return to their home states. They’ve experienced job loss, financial insecurity, mental illness and many other challenges. We mustn’t ever forget the way this year has impacted those already facing barriers.

I hope that we move forward with greater welfare support for those who most need it, and greater job security for casual and freelance workers. If this year has taught us anything, it’s that the unexpected can hit us hard, and we need a safety net for everyone. 

However, despite some really long, dark months, a lot of uncertainty and missing life as I was used to, I enjoyed the slower life that 2020 forced us to have.  I hope a little of that continues. I enjoyed staying in and cooking. I enjoyed walking most days and smelling and photographing the flowers. I loved getting immersed in audiobooks (I’ve read 100 books this year!). I’ve had lovely times with friends – especially when we were able to come together again. I was conscious of supporting small businesses – online shopping was my thing! I loved doing more writing projects and doing some exciting work like radio and online events and media. I had fun with creating outfits! I tried new things – rollerskating and starting an online book club are two new things I’m proud of! Growing Up Disabled in Australia is a real actual book that will be out in February 2021! And I really feel Adam and my relationship has strengthened.

Those outside of Melbourne won’t know how hard things were. How isolating and lonely it was; the strangeness of seeing empty streets and supermarkets depleted of essentials. I tell my parents in country NSW, and my interstate friends, about how we wore masks everywhere for months – we still are; how trains were deserted; and it all seeming never-ending. They’ll never know how it felt to suddenly have work stop – for months on end. IpBut also, they’ll never know the community spirit – neighbours getting to know each other and dropping around food; chatting to essential workers at the supermarket and chemist; meeting a friend who lived nearby for an hour of outdoor exercise. How my work colleagues have been so amazing – getting two festivals up being so considerate of each other. And how everyone worked so hard so that Covid numbers could reduce, and so we can be together again – carefully.

As we close the door on 2020, I’m worried we are pinning all our hopes on 2021. It won’t be different to or better than 2020 if we don’t work together. Covid-19 doesn’t work to a calendar. Of course we must continue to take precautions to prevent the spread of Covid-19, because the pandemic isn’t over just because you’re over it. We must also ensure events are accessible – both IRL and online; flexible work arrangements need to still remain; and that we treat others with kindness and respect; and that we continue to call out the injustices and discrimination faced by so many, and work to create positive change for all.

Here’s to a new year! Be safe, be kind.

And thank you for your support this year. It’s been wonderful. 

Heres a photo of me on the last day of the year – tired and unsure of what’s next, but also happy. I made it. 

image: woman with a red face and short dark hair tied back, wearing a purple and red crocodile print jumper, and floral pants and sneakers. She’s standing near a white wall, smiling.

Has my work helped you this year? Has it made you think or will you use it in your work or school? Please consider buying me a drink to say thanks.

The Arts Show IDPWD episode

I am so excited that I co-hosted The Arts Show on ABC Radio National with my friend, colleague and mentor, Namila Benson, on ABC Radio National on 2 December.

Image: two women, smiling and standing under a green tree outside. One woman is short, with red skin and shoulder length dark curly hair, wearing a purple and green dress over a purple top. She’s got a colourful kite necklace and a rainbow daschund brooch on. The other woman has black skin and is wearing a black top and skirt, and big orange earrings. She’s also got big tight curly hair that is black and red. A brown wooden fence is behind them.

We chatted to Eugenie Lee (who makes pain simulation installations); Digby Webster (a multi disciplinary artist whose painting was shortlisted for The 2020 Archibald Prize); and Ceilidh Dalton (a metal artist who specialises in sculptures of Australian animals and plants). Music by Dr G and Eliza Hull is also featured.

I am SO proud of this. It was a lot of fun to meet these very accomplished and interesting artists, and also to work with Namila.

You can listen to the episode here.

Content warning: self harm, chronic pain. If you need support, please contact Lifeline on 131114. 

The transcript of the show is here. 

Artist info

Eugenie Lee

Korean-Australian artist Eugenie Lee uses installation, virtual reality and haptic devices to create interactive works that give participants an insight into what life is like for people living with chronic pain. You can follow Eugenie on social media, here and here.

Digby Webster

Digby Webster is a jack-of-all-trades when it comes to creativity. He’s an actor and a hip hop dancer, and this year his painting of artist Neil Tomkins made him a finalist in the Archibald Prize. Neil and Digby painted each other for the prize intending to submit separate entries, but when they finished their works and realised their paintings shared many similarities, they decided to hang them together and submit their pieces as a shared entry. You can follow Digby on social media here.

Ceilidh Dalton

Ceilidh Dalton is a blacksmith and silversmith, and her jewellery creations have a strong environmental focus. Australian plants and animals regularly feature in her work. But Ceilidh hasn’t always practiced art. She actually began her professional life as an accountant doing tax and actuarial studies. You can follow Ceilidh on social media, here and here.

Namila and I did a funny promo video – when masks were mandatory. 

 

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