Carly Findlay's Blog, page 26

Interview with Beth Bradfield from Malory Towers

[image error]image: a side by side collage of two people smiling. On the l on the left is a woman in her late 30s with a ref face and short dark hair tied back, wearing a floral blouse. On the right is a w young woman in her teens, with fair skin and long brown hair, wearing a blue and white striped top. At the top of the photo is “Beth Bradfield chats with Carly Findlay” in white on aqua, and the ABC logo which is like a three point infinity sigh .

I am SO proud of this – a little video interview I did with Beth Bradfield from Malory Towers for ABC Life.

An adaptation of Enid Blyton’s Malory Towers books has been made for TV – filmed in both the UK and Canada.

Beth is AMAZING! Lots of people wrote to me to tell me I must watch Malory Towers – for the positive representation of facial difference – and I was blown away! I pitched an article about incidental inclusion in film and TV to the ABC, and @bhakthi came back and suggested this video. It was a joy to chat to Beth – we chatted for 25 minutes or so all up, and I was smiling the whole time. She is a star – so insightful and smart and an incredible role model for young people in the arts!

A big thanks to BBC Children, King Bert Productions and Beth’s Dad, Robin for working with me on this too.

You can watch Malory Towers on ABC Iview in Australia. It’s so good – nostalgic and feminist and funny – perfect for 2020.

Video: an interview between two people – a woman in her late 30s with a red face and short dark hair tied back, wearing a colourful floral blouse, and a young woman in her teens, with fair skin and long dark brown hair, wearing a blue and white striped collared top. The video also features scenes from Malory Towers.

Beth sent me some extra interviews after our chat.

Changing Faces

Interview with Beth’s Dad Robin

Beth recently played Jean in the new @cbbc Malory Towers.

Here she talks about filming the show, the incredible reaction from viewers, and why other young people with visible differences who want to act should 'go for it'.

Watch the series

Becoming confident with ichthyosis

[image error]Image: Woman with a red face and short dark hair tied back, wearing a top that has trifles on it – a bowl of cake, jelly, fruit, custard and cream. The top is pink. She’s also wearing a trifle shaped brooch. She’s standing near a grey wall, smiling. The photo is from her waist ups

I get lots of questions about how I am so confident when I have ichthyosis. To be clear, these questions are often from people with skin conditions or facial differences, not people outside of these communities being ableist.

The statements some of the people have made about themselves and their appearances breaks my heart. Words that are steeped in self hatred and embarrassment, and also the desire to fit in.

Firstly, I’m so sorry you’re struggling; and I hear you. Self acceptance and pride takes lots of practice .

And it can be hard to accept and love yourself when so many people stare and ridicule you. I know. You are not the names they call you.

I came to accept that I have ichthyosis and this is how it will be for the rest of my life at a pretty early age. That was a fact. It didn’t mean I was happy with myself back then, it just meant I had stopped looking for a cure – because there isn’t one – and trying to change through treatments and makeup left my health and appearance worse off.

I stopped with the negative self talk. I wouldn’t tell my friend they look like ugly or like a monster, so I don’t speak like this to myself.

While my work is in appearance activism, I am more than my appearance. You are too.

I started wearing clothes that made me stand out in a different way to my appearance. Clothes that make me happy.

I give compliments to others, and became comfortable receiving compliments.

I look in the mirror and take selfies without shame.

I surround myself with people who look like me. Social media is great for this. Search #Ichthyosis or #DisabledAndProud on Instagram, or follow the amazing disabled people I share here to start.

I stopped consuming media that put people with skin conditions down through negative advertising around skincare and flaky scalps, and that didn’t feature people who looked like me. These weren’t uplifting. I wrote myself into the media instead.

I am visible on social media and in the media so that people with skin conditions and facial differences feel less alone.

I found orgs like Changing Faces and Face Equality, which had useful resources based on lived experience.

I stopped covering up and hiding myself or parts of my body away. I stopped trying to be like others. You don’t have to confirm to a beauty ideal. You are enough.

And I’ve sought mental health support when needed. Lifeline and Kids Helpline are useful, or see a regular counselor.

If this post has helped you or you’ll use it in your work or school, please consider buying me a drink.

Yesterday I wore this fun outfit – double trifles! Trifle is a fave dessert – it runs in my English genes – and so when La Vidriola and Rattamattat released a trifle brooch & top respectively, I had to have them! So cute & mouth-watering! My skirt is Gorman x Mangkaja Arts Resource Agency.

 

[image error]Image: Woman with a red face and short dark hair tied back, wearing a top that has trifles on it – a bowl of cake, jelly, fruit, custard and cream. The top is pink. She’s also wearing a trifle shaped brooch, and a red, yellow and purple vertical striped skirt. She’s standing near a grey wall, smiling. The photo is almost full length.

Hi

 

 

Social media and online abuse on Q+A

 

Last night I asked a question about cyber hate on Q & A. I was invited to submit a question late last week. The topic was social media. Watch the whole episode here. 

In the ten or so years I’ve been writing professionally – mostly online, I’ve experienced a lot of online abuse – from anonymous people, and also from some people I know.

Earlier this year I had a lot of appearance-related hate speech on Twitter and on Instagram, and I’ve also had death threats on Twitter and my blog in previous years. My photo has been misused on Reddit. A couple of women would leave bad reviews for  Organisations I had spoken at. And I went to court to stop a man whom I knew from abusing and defaming me on Facebook.

Recently, the abuse has been public, defamatory, ongoing, long term and targeted- from people I know – on the bullies’ own social media platforms. Its been covert and overt.

The abuse has impacted my mental and physical health and my work – giving me panic attacks and making me fear for my safety.

When I have reported it to the social media platforms, the response almost every time is that it does not breach community standards.

Part of this response, I think, is because those moderating the hate speech don’t recognise it as it pertains to marginalised people. Ableist abuse is often dismissed and not easy to spot if you’re not disabled, for example.

An online community is real life, and these aren’t the standards we should accept in the community.

And while I acknowledge hat not everyone who uses social media has had bad experiences, it doesn’t mean it’s not happening to others. 

I really do look forward to the changes the eSafety Commissioner has more power to act on online abuse

I also want to add that social media has, for the most part been *amazing* for me. I’ve found community. Found work. Found myself. I love connecting and learning new things and growing. I’ve made hundreds of friends online.

My own online spaces are generally safe, because I’ve cultivated that community. Thank you for being here and for your ongoing support.

Lastly, social media is vital for many disabled and chronically ill people to connect and to find information – because it can be hard to leave the house.

Thanks for having me, Q+A.

Video: a short clip from ABC Q+A – Hamish introduces my question, I ask the question from my backyard, and panelists discuss it.

My concerns with Covid-safe outdoor dining and events in Melbourne

Today’s announcement of Covid restrictions easing in Victoria has made me a little more hopeful. Can’t wait to see friends and visit shops and eat out. Well done Victorians on making this happen.

But I am dreading outdoor dining (and outdoor events in general). My concerns aren’t just for me, but this post is how it applies to me, because I don’t speak on behalf of all disabled people. I have heard similar sentiments from many disabled friends, colleagues and social media followers – in Melbourne, other Australian states and overseas where outdoor dining is starting to happen.

Melbourne weather is temperamental. Summers are hot, but it can also be freezing in January. Life with ichthyosis means I hate outdoor events at the best of times.

Outdoor dining is not accessible for me because of the weather, and being unable to regulate my temperature, and needing to stay out of the heat in the summer.

Additionally, if dining is on footpaths, it will decrease space for wheelchair and scooter users and prams to travel.

I understand we need to have outdoor dining to reduce the risk of Covid, and to ensure restaurants can reopen.

But not everyone will be able to participate and enjoy it. I fear for many of us, we will continue to be isolated because we won’t be able to access the Covid normal.

I need to read more about the Victorian roadmap out of lockdown. But with the information delivered today, I’m worried.

Covid aside, it’s really hard to request accessibility at events, restaurants etc. (It’s been hard to ask for a seat while waiting for takeaway as current restrictions stand (pun intended.)

I dread having to call a restaurant & potentially argue my need for an indoor seat because I cannot dine outside.

Things that could help:

– A welcoming statement from restaurants to say they will try to meet access needs where they can.

– Enough indoor dining options.

– Not having to disclose disability when requesting access.

– Shade, heating and cooling outdoors.

– Enough room on footpaths for people mobility aids, prams etc to move past outdoor dining spaces.

– Blankets (cleaned after each use).

– Easy access to accessible toilets inside restaurants.

I hope Daniel Andrews, Martin Foley, Brett Sutton  and all restaurants and cafes etc have an accessibility plan alongside their Covid safe plan, so that everyone can enjoy the easing of restrictions. I am here to consult if needed.

Also, no devil’s advocates please – I’m pretty tired.

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

Rollerskating and practicing publicly

I put my rollerskates on for the fourth time today.

The first time I put them on was in the house.

The second time was at this same park, two Fridays ago. I was too nervous to venture too far from the pole. I think it took me longer to put all my protective gear on than I spent trying to skate.

 

[image error]Image: a photo of a woman with a red face and short dark hair tucked under a purple helmet, wearing a peach coloured dress with pink and yellow jellyfish on it. She’s also wearing aqua green rollerskates and pink and purple pads on her knees, elbows and wrists. She’s standing on concrete, holding onto a wood one pole for dear life. She’s smiling – nervously and accomplished. A river is in the background. The sky is bright blue and grass bright green.

The third time was last Saturday outside at home, when I practiced getting up and down from the concrete, as I’d seen in tutorial videos on YouTube.

And today, Adam and I went to the park. I got a tiny bit more confidence to skate further from the pole this time.

Adam captured a little of it on video. I look so scared. So wobbly. So not good. But also proud that I did more than last time – fiery

I skated up and down and around the barbecue area (socially distanced of course)

I had a fall – as I held onto the pole. I fell and knocked my head – thank goodness for the helmet – and my side hurts from pushing against the pole. I laughed a lot and got back up. (Unfortunately Adam didn’t get that on video but I wish he had.)

A man and his little girls looked worried and said “ooh be careful”, which of course made me unsteady.

I almost didn’t put this video up. I was scared of being laughed at, even though I laughed at myself.

As I was putting the video together, chuckling to myself about my concentration face, I realised something.

We don’t show ourselves practicing a lot on social media. We don’t show the wobbles and the falls and the concentration faces and the tears. I don’t anyway – and don’t much from others.

When I put a piece of writing online, it’s often gone through one or two or more drafts. Sometimes – like this post – I write and upload straight away.

When I put a photo on social media, it’s usually the best one or two of several.

When I do a speech, I’ve usually read through it several times; and when I upload a video, it’s often the third recording that I get right.

I’ve been using social media a long time – and blogging even longer. All of the cumulative work has been of course an apprenticeship for writing for the media and other exciting work. I got good through practice.

But you don’t often see me practice. You don’t often see me stumble. You don’t often see how nervous I am – not just with rollerskating but other things too. And you don’t often see me show you something I’m not objectively good at. That’s not a brag, nor to say I’m good at everything. I’m not. But I really only put completed things online, you know? And so do most others I know.

So here it is. Me practicing, a little vulnerable, very scared, no flattering angles, and with the knowledge that I’m not very good at all.

As I got up after tying up my skates, a woman said to her little girls “look at her go!” as they walked along the river. She was so excited to tell me her girls have skates on the way.

“This is my only fourth time, my second time moving. I’m not very good”, I told her.

“You’ve gotta start somewhere”, she said.

I’m so glad I got that bit of encouragement today.

Video: a woman with a red face and short dark curly hair under a purple helmet, wearing a floral dress, and all the padding. She’s rollerskating hesitantly – feeling scared and wobbly and accomplished all at once. She’s in a park, skating on concrete. A river and car park are on either side of her.

Say Hello is available in all formats worldwide!

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I have some very exciting news – my memoir Say Hello is now available in ALL FORMATS WORLDWIDE!

I just love how this was made possible. My dear friend  Haben Girma, who is a lawyer, writer and activist and also Deaf-blind) wrote to me, asking if the book was available in e-pub format in the USA – this was the best format she could access it. I spoke with my publisher from HarperCollins Books Australia and, within a week, Haben had a copy of the ebook, AND I’d signed a contract for Say Hello to be available worldwide.

Accessibility is so important to me, and I love how this request for access has opened the book up to a worldwide audience – and that it was such a quick process.

My book is available in paperback, ebook and audiobook (narrated by me – as a download and CD). I’d prefer it if you bought it from independent Australian bookstores, but you can also buy from international stores like Amazon, Audible, iTunes and Book Depository – and I know Readings and Dymocks ship from Australia.

More info at www.CarlyFindlay.com.au/SayHello

The privilege of wearing a mask

[image error]Image: A woman with a red face and dark curly hair tied back, the lower half of her face is covered by a blue, green, black, white and purple floral mask. She has dark brown  eyes. She’s wearing a purple jacket over an orange top with pink, lilac and yellow spots on it. On her lapel is a yellow care bear brooch with a sun in his tummy. The bear is waving.

When Covid restrictions start easing, I’m going to struggle getting reacquainted with being frequently stared at and commented on in public – because of my face. 

I have NOT missed the stares and comments from strangers since I’ve been wearing a mask. 

I have not missed the curiosity and fear from children. 

I have not missed the sniggers, finger pointing and double takes from adults. 

I have not missed holding my breath before getting in a taxi, anticipating whether a taxi driver will refuse me service once they see me. 

I have not missed the refusal of a chair at a music venue because I only look sunburnt, not sore enough to be unable to stand for a long period of time.

I have not missed navigating drunk and drug affected people who comment on my face even more arrogantly than sober people do.

I have not missed the ridiculous questions (ok, some of them are pretty funny!).

I have not missed the tiring interruptions to my day because of someone’s rudeness. 

While I’m heavy with tiredness from living in a pandemic; the uncertainty of work and the grief from everything that is no longer, I have a profound sense of lightness too.

I am proud of my appearance, and confident too. But I have not missed feeling like I shouldn’t be, because of someone else’s awful behaviour.

There’s a comfort in blending in – everyone has a level of uniformity now. And while my skin experiences a little discomfort from wearing a mask for more than 20 minutes, it’s been a relief not to be stared at as often. 

Of course none of my masks are plain. They’re all bright florals, and I’ve had fun integrating them into my outfits. And they’re an excellent conversation starter.

It really has been a privilege to go about my day not being stared at for the last six months or so.

And if you’ve never experienced the situations I’ve listed above, please remember your privilege.

How about when all this is over – *gestures wildly at the shit-show of 2020* – people stop stop staring at those of us with facial differences, skin conditions and disability. I know my friends from these communities feel similar to me.  (Read Ariel Henley’s brilliant piece on masks.)

When *all of this is over*, there are some things that I hope we will keep. The options to see doctors by Telehealth. Making IRL events digital and more accessible. The slower pace. And being able to go about my day without being singled out, harassed or discriminated against because of my face. 

[image error]Image: A woman with a red face and dark curly hair tied back,. She’s smiling. She has dark brown  eyes. She’s wearing a purple jacket over an orange top with pink, lilac and yellow spots on it. On her lapel is a yellow care bear brooch with a sun in his tummy. The bear is waving.

Has this post made you think differently about disability, appearance diversity and facial difference? Will you use it in your school and workplaces? Please consider buying me a drink. Thanks!
You can read more of my writing in my memoir, Say Hello. It’s available in paperback, ebook and audiobook, worldwide.

Animation Carly feels fucking fabulous

Video: An animation representing me – a woman with a red face and short dark curly hair, standing in a garden. There are seven different frames – each has the same woman and garden, but with different outfits on, and different light.

Oh my goodness! This artwork of me by Monique Gabrielle Illustration has made my week!

It’s an animation, inspired by my outfits. Monique told me “I had the idea when ther was all the talk about Clueless 25 year anniversary, and how Cher has that cool computer outfit thing & I was thinking how much you need something like that!!! Haha then it just turned into an animation

Growing Up African in Australia review by Reading Women podcast

Well, this is exciting!

View this post on Instagram

Our September discussion episode is now available—tune in to hear Kendra (@kdwinchester) and Jaclyn (@sixminutesforme) discuss ABOUT US (@liverightpublishing) and GROWING UP AFRICAN IN AUSTRALIA (@blackincbooks).⠀ .⠀ Because we are big fans of anthologies, both fiction and nonfiction, we also have a few extra recommendations that we share. Jaclyn has two #AusLit short story anthologies to recommend—COLLISIONS: FICTIONS OF THE FUTURE (forthcoming from @panterapress) and NEW AUSTRALIAN FICTION 2020 (@kyd_magazine). Kendra recommends you check out BODY TALK (@algonquinbooks) and LGBTQ POETRY AND FICTION FROM APPALACHIA (@wvupress). Check out the episode show notes for more details on these titles, a link is available in our bio.⠀ .⠀ .⠀ .⠀ .⠀ [image description: copy of Growing Up African in Australia held up with a book cart full of books blurred in the background]

A post shared by Reading Women (@thereadingwomen) on Sep 16, 2020 at 6:13pm PDT

image description: copy of Growing Up African in Australia held up with a book cart full of books blurred in the background]

Jaclyn and Kendra from The Reading Women podcast discussed About Us – the NYT Disability anthology, and also Growing Up African in Australia . They also mention Alice Wong’s Disability Visibility anthology. Their discussion was both kind and critical – talking about who’s included in these anthologies, ams who’s missing.

I wrote for Growing Up African, and am thrilled they mentioned my story! I am especially excited that it was mentioned given the recent racism I experienced within the disability community.

There is a transcript too.

Listen to the podcast here.

Read the transcript here.

The Reading Women podcast and Instagram has been such a huge supporter of me – thank you! Kenrdra has given me shoutouts on Book Riot – about Growing Up Disabled in Australia and also about Say Hello. And Jaclyn is always lovely to chat to. It’s fantastic that diverse books are being supported on world podwaves. Thank you!

Pre-order Growing Up Disabled in Australia – out in February 2021.

Buy my book, Say Hello.

On the invisible nature of chronic pain in my visible disability

[image error]Image: selfie of a woman with a red face and short dark hair tied back, wearing a red floral dress over a purple top, and a necklace that is a rolling pin rolling out cookie dough. She’s smiling near a white door.

It doesn’t look like it, but my skin was really sore on the day the photo above was taken. (Mostly my legs.) That’s the thing about severe skin conditions – sometimes pain is very obvious, and sometimes it’s not.

And I really relate to this article, where Samantha Rennie says

Don’t assume I’m not suffering just because I’m used to pain.

Because while I experience a level of pain most days, it’s not constant, nor comfortable, nor appearance changing. My face almost always look the same when I’m in pain compared to a low pain day, and of course I never have bare arms or legs, so apart from my walking, most people cannot tell.

That day I managed working from my desk for an hour and then from bed for three hours, then some sleep, a salt shower and some strong painkillers before I went to sleep.

And I looked the same the next day, but the pain had improved considerably.

Ableism – even from within Disability and ichthyosis communities – meant that for most of my life I didn’t call the pain I feel chronic pain. Because I didn’t feel it was bad enough compared to other impairments. Because others with ichthyosis told me that they didn’t feel pain, or they were very capable of doing things I could not. And I didn’t get the treatment I needed for the same reason.

Now I do. It’s chronic pain. In my case, chronic pain is in relation to my skin. I function as “normally” as is normal for me, and I also speak up when I cannot. I will not be shamed into feeling it’s not bad enough, or that there’s stigma around painkillers, or because of the often invisible nature of pain in visible disability.

It’s ok to say “I’m too sore today”, or “I can’t stand for long, please get me a chair” or “I’m going to find a more comfortable way to work”.

When I wrote about this briefly on Facebook last month, so many people said they experience similar, including people with ichthyosis, and parents of children with ichthyosis. It was affirming and also pervasive.

American Disability activist (and my friend), Lauren Bryant and I got chatting about chronic pain. She told me:

Chronic pain is as simple as that. pain that is chronic and doesn’t go away, ever. even if you don’t take pain medication every day, even if you’re able to ‘push through’ the pain to do the things you want or need to do, you can still say you have chronic pain. your pain is as valid as anyone else’s.”

[image error]Image: A young woman with sheer light brown hair, fair skin and big smile. She short statured, sitting in a power wheelchair. She’s wearing a blue dress.

Naming chronic pain, and talking about it – to myself and to others – these last four years – has helped me immensely.

You shouldn’t have to ride pain out, or think that it’s only “bad enough” when you’re completely unable to do things, or if your pain isn’t as bad as someone else’s. You are allowed to say “this is chronic pain” and do the things you need to do to ease it.

In writing this piece, I’ve been thinking about the language about disability, specifically invisible disability. I read this really great Twitter thread by PhD candidate and disability activist Corin Parsons de Freitas on the importance of language and perception about invisible disability. The tweets made me think of my own privilege, and also struggles, in having often invisible aspects of a visible disability. Corin writes about how aspects of disability looks.

You start to clue into terms like spoons and fatigue. You start to notice nonmedical aids and supports that serve a medical purpose. You start to appreciate a certain way of communicating about bodyminds and needs, a certain way of framing care and delivering mutual aid.

— The Tweedy Mutant