Carly Findlay's Blog, page 29

Chatting to Darren Hayes on Instagram live

What a strange time this is, this life in self isolation. I hope you’re all doing as ok as can be. I’ve home for five weeks now, not venturing further than one suburb away – in walking distance. And while lots of people are taking up baking as a hobby, I’m too busy working to make up for the lost speaking engagements due to Covid-19. And I’m surprisingly busy, which is nice, What a time.

The one thing I’ve loved has been seeing is the creativity of people online – from dressing up to take the bin out to a football commentator calling the tense match between his dogs. I’ve also been enjoying the informative and funny Covid-19 themed podcast featuring Bob Evans and Josh Pyke – honing in on the arts industry. And I’m loving the live social media streams – music, chats, and story time. I plan on doing some soon – I’ve already done one chat with Cal Wilson, and I am launching Danielle Binks’ book at the end of the month. It’s not all gloomy.

By chance on Tuesday night, I managed to catch Darren Hayes on Instagram live. You know my fandom for Darren knows how bounds. It’s been 24 years. He was accepting requests to chat with others on his live, and he requested me! It was so fun, and I’m still squealing.

We didn’t discuss anything profound. In fact I just fangirlEd him like it was 1997. But that’s all I needed – eight minutes of nostalgia to make me feel like all is right in the world. Listening to Savage Garden and Darren Hayes makes me feel safe, and so I’m thankful to Darren for indulging me in my fandom, age 38. I make no apologies for my fandom.

[image error]Darren and I, 2004 – white man hugging a woman with red face. They are both smiling widely.

Darren: Carly! Uh oh my goodness. Hang on one second, let’s get you on. Let’s me see.

D: This is one of my, I don’t mean oldest as in oldest, but I mean like old school people from the audience that I recognise!

0:16

D: And I may have kissed this lady on the cheek once.

0:20

Let’s see if she remembers. I know she does, I remember.

0:30

D: Go ahead Carly, Carly Findlay, you are on the air. 

Carly: Hi! Look at you! look at me!

0:47

C: how are you? 

D: I’ve got very long hair. 

C: I know! You looking amazing! You’ve got a man bun!

C: Our hair is quite similar right?

D: I know. It is. It is. I was gonna get it cut. 

0:48

C: You should do the Curly Girl Method. Have you heard of that?

0:50

D: no what’s that?

0:53

C: This will change your life. Right. You need to condition more than you wash

D: Oooh! 

1:02

C: You probably wash maybe once or twice a week, condition and get some really good product.  I’ve done very little to my hair today but go and check out my agent – Danielle Binks – @Dbinks – and her hair is amazing.

1:15

D: All right. Let’s just get it out the way. Your agent has probably got better hair than my agent. 

1:23

How are you?

1:24

D: I am good all things considered this has been really nice actually doing this

1:31

C: It’s been fun. It’s good to see you. 

D: It’s good to see you too. 

C: I have been a fan of yours for 20 something years more than half my life. 

1:37

D: Was it Melbourne that we met?

1:39

C: Yeah, in 2002 I think.

1:48

D: Which venue? Was it the Earthly Delights tour? 

1:49

C: I think it was the Forum when we first met or The Palais, no the Palais

D: Yeah, that’s so. Wow. And then yeah, but you weren’t on the front row, what was the Arena in Melbourne. 

C: Yes! In Rod Laver and I was just…yeah.

2:10

C: You know, I’m 38 now and I listen to music and I still feel the same as I did when I was 14. 

D: I love that!

2:20

D: I do that with the music that I listen to like lately I’ve been going through a period of listening to Madonna’s “Like a Prayer” album and because recently a lot of her tour footage from the 1990 tour from her era, it’s kinda of leaked. So there’s been a lot of like, there is one Savage Garden actually, that, you know, when you see a show in a venue, and there’s the supporting video screens, sort of back in the 90’s. They would run a VHS and someone always had one of those copies. And…something just happened in my light went dark, but I don’t know…and so these videos have been launched and leaked on YouTube. And, whatever and I felt the same way. I was just like, this is how I was. Let me just turn this light off it’s weird. 

3:10

C: It’s the light, I want to get my selfie light, my selfie light makes my teeth look very white.

D: *laughter* I didn’t know what I was doing here…

3:22

C: The first time I saw you was at the Old Palace. Do you remember? It was in 1997? Yes. And I, I’m so short, you know, like, I’m like five foot one. I could not see a thing. And it was the most terrifying thing. 

D: Was it the all-ages show?

C: Sure, yes. And I still got the velvet shirt that I wore, it doesn’t fit me. But I wore that because I knew that Darren would wear something similar. 

D: And I do. I love that! 

C: Yeah, so I saw you then. I saw you in 98 and I saw you in in 2000. In 2000 I remember seeing a review of your concert like in the Australian or some paper, I think it was the Australian anyway, but they got your name wrong. And I wrote a letter to the editor. They said, No, I think they got Daniel’s name wrong actually. And I said, like they are not frogs jumping because they called him Daniel Johns.

D: Daniel Johns!

4:24

C: And then I saw you singular, I think in 2001, or maybe two.

D: Yeah that would have been at the Palais…

4:34

C: The Palais, I didn’t see the Forum because I was in hospital, maybe. 

D: Oh! 

C: So I remember I missed seeing you after I came out of hospital. I was so excited. And then at Manchester lane.

4:47

D: That was a great show. I don’t mean, but I just mean like, itwas sort of electric. So that was for the tension and the spark. 

C: Yeah. That was amazing. 

5:00 And then I saw you at Sonic I’ve seen twice, I think I saw you twice at Manchester Lane, yeah twice. 

5:05

C: For this delicate thing we made – the launch. And then I saw you in Melbourne at the Forum. And I saw you in Sydney, Brisbane. My mate Bob Evans. You know, Kevin Mitchell from Jehedia. He has a bit of a running thing with me as a fan.  “Like how many times have you travelled to see Darren?” and I was like “Further than I have travelled to see you”.  

5:30

C: But he’s launched my book so I think he’s got one up on you. And he came to my wedding. 

5:34

D: He does.  Hey, can we plug your book?

C; Yes.  I’ve got it.  Hang on. 

D: Yeah, It’s amazing. 

C: I’m gonna go get it. 

5:44

D: We’ll plug your book.  Carly is an amazing author and she has written book. I think I should read it. 

5:47

C: It’s called “Say Hello”. And it’s available online. Audiobook worldwide. Paperback in Australia and is going to the UK very soon, I think. I was supposed to be going to the UK but because of this thing I’m not. 

6:05

D: Yeah, of course. 

C: Okay, and I’ve also got, hey this is a sneak peek. Second book. 

D: Oooh! 

6:13

C: Growing up Disabled in Australia and that’s out in February of 2021,

D: Okay, I’m so proud of you. That’s amazing.  That’s just awesome. 

C: Thank you. Look how far we’ve come Darren. 

D: I know! 

6:31

C: Can I Can I just tell you something when I do my tour, my book tour, my statement tour like yours? I took that about you alot and I have a joke my book is single handedly relaunching your career in Australia because so many people tell me, they’ve downloaded your music since they’ve come to my events, and I have written very fondly of you in here.

D: Yeah I know, I’m very grateful. Oh my gosh. I could imagine if it was an awful expose! 

C: No, only the best words for you Darren.

D: You are so lovely. And it’s so great to see and so great to seeyou doing well.  

C: Thank you. 

7:13

C: I was sitting in this ratty old pajama top before and I just changed into my clothes in case you picked me!

7:19

D: I’ll show you guys what I’m wearing I’m wearing my oldest t shirt. 

C: Oh – like Michael Jackson’s “Bad”.  I have a Bad t-shirt, I used to have one. *laughs*

7:31

D: Look, ha! not that Bad, don’t criticize your clothing! It’s got a bleach Mark because I put it in with bleach one day by accident. It’s really bad. I’m in my tracky dacks it’s not a good look. 

C: I’m in my pajama bottoms.  That’s inside out actually.  

D: OMG, that looks so much better. Listen I am going to say goodbye.  I love you. 

7:49

C: really lovely to talk to you, Bye! 

D: Bye!

This chat is shared with Darren’s permission. Follow Darren on Instagram.

Transcript edited by Jacci Pillar.

Buy my memoir Say Hello.

Preorder Growing Up Disabled in Australia.

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Book review: The Pretty One – On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me by Keah Brown

[image error]Image: a book cover and a portrait of a woman, side by side. The book cover features a pink banner with white text that reads “Keah Brown”, above a photo of a black woman with shoulder length straight black hair, smiling widely with her hand near her face. She is wearing a pale grey wool off the shoulder jumper and glasses. To her left is a quote from Roxane Gay: “Through her words we learn that Brown is not just the pretty one, but the magnificent one”. “THE PRETTY ONE” is in bold white text over her photo. At the bottom of the book is a yellow banner with black text: “On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me. The photo on the right is the same woman, up close, smiling and leaning to the left.

Content warning: internalised ableism, depression, suicide ideation 

The Pretty One by Keah Brown is a memoir (in the form of a series of essays) on Keah’s experience of being a young disabled black woman. It also features a lot on pop culture – with mentions of films and music in most chapters, and fashion too. It’s a journey of a life of internalised ableism and shame to pride and self love – the latter has come about in Keah’s mid 20s. 

Keah and I are similar in terms of being disabled women of colour with our strong love of fashion and deep fandom. I also related a lot to her feelings associated with physical pain.  In listening to her memoir, I realised how many of the same themes are in my own memoir. I felt fandom was a big part of me finding my self worth, and this was very much the same for Keah. (I wonder if disabled people feel a kinship with fandom more deeply than non disabled people because while we fantastic we to an extent, we finally feel accepted and heard?)

Keah’s profile rose when she started the viral hashtag #DisabledAndCute in 2017 – asking disabled people to believe that they can be disabled and cute. She also writes for the media – Teen Vogue, Harpers Bazaar, Lenny Letter and ESPNW. I am a big fan of Keah’s media work, so I was thrilled when she announced this book deal.  The essays are quite long, and are mostly separate from each other, though some themes overlap. 

With the vast number of body positivity and body image struggle literature being from thin, white, non disabled women, it’s refreshing to have Keah’s words. She writes about struggles with body image and move to body love from the perception of a black disabled woman with a scarred body. Her negative feelings about her body often stemmed from how the world portrays disabled people – from a lack of and poor media representation, to pop culture and dating sites. She often feels undesirable, even when she arrived at self love. 

Keah relies on fantasy a lot – especially around what finding love and a relationship would feel like. She yearns to experience love, and a break up, simply so she can feel the power or belting out a break up song. She has endured a lot of unrequited love and is yet to find love. A lot of this content seems younger than a woman in her late 20s – but the reality is for Keah, and for many other disabled people, they haven’t experienced true love due to ableism and prejudice, and can only imagine what love feels like.  She also writes about love from the intersection of being a black, disabled (and most recently) bisexual woman – and how love stories in pop culture are mostly positioned from a white perspective.

And although Keah has reached a point of self love, she s still perplexed at why she hasn’t found love with another. In the chapter An Ode to the Boys, she writes, 

“What does it mean that in order to keep myself from despair, I sometimes live inside my head, inside a world where I am desired by men my age and by people who see my body as worthy of love and desire, people who see me as much of the same?”

And 

“I was always told that when I learned to love myself, the right person would come along when I least expected it. Maybe he will, but for now I am a little let down by the results. I didn’t go into this journey because I thought it was going to solve all my problems. I did it because I was tired of living how I was. It’s a strange dichotomy, to love yourself while knowing that no one else does yet. Before I loved myself, I thought I knew why no one loved me, because of my physical disability. After love, I am all out of answers, because the things that I used to hate about myself I like now.”

While Keah puts a mirror to her life – exploring dark periods of self hatred, internalised ableism and suicide ideation, many of the reasons for these feelings are universal. Keah writes about the damage of inspiration porn and the belief that the other body is superior – not her black, disabled body. 

The book is very introspective – I think that writing is the way Keah makes sense of the wold – writing is therapy for her. At times Keah shows a great level of self consciousness and also self deprecation in her writing – almost pleading that she’s worthy (Keah, you are so worthy!). She is also very vulnerable, detailing dark thoughts – envy of non disabled people, and not wanting to live anymore. But she also balances this out with a strong celebration of self. 

“…I believe that marginalized people in particular are expected to do so much quietly and without acknowledging the work that has gone into the thing we are being complimented on. I am not doing that; I have worked too hard and spent too much time trying to dim my light so others could shine. My emotions and I are over that, and we will be loud and proud. Celebrating smaller and bigger wins is imperative in being unapologetic…”

While introspective, Keah constantly shouts out people in her life who have helped her – friends, writers, Disability  activists and family – and credits are lot of her fandoms too. She is a great leader in our community, often giving back. 

The Pretty One ends with a declaration of self love – and Keah also acknowledges how self love takes practice, every day. 

I’ve been seeing Keah’s star rise for a few years now, and I’m so proud to call her a friend. Thank you for writing this Keah, you’ve written a book that is long needed. (And thanks for mentioning me too!) I can’t wait to see what you do next. 

I listened to the audiobook of The Pretty One. Keah narrated it herself. 

Buy The Pretty One in Australia.
Download the audiobook.
Follow Keah on Twitter, Instagram and Facebook.

Has my work helped you, made you think, or have you used it in your workplace or school? Please consider buying me a drink. PayPal and Patreon options are here.

Order of Australia

[image error]Image: woman with red face and dark curly hair tied back. She’s wearing a blue and white check dress. She’s standing in a book store.

I’ve been awarded an Order of Australia Medal (OAM).  It’s for my work with disabled people

You can read the whole Australia Day Honours list here.

I admit to having a massive case of imposter syndrome – it’s a strange feeling. I’ve known for over a month and haven’t been able to write anything down about it until now. 

But I’ve reflected on my achievements – editing Growing Up Disabled in Australia, writing Say Hello, speaking at various writers festivals including Ubud, Melbourne and Byron,  working as Access and Inclusion Coordinator at Melbourne Fringe, creating Access to Fashion at Melbourne Fashion Week, running the Australian Ichthyosis Meet, appearing on You Can’t Ask That, working with advocates to change policies, writing for the media and providing advice and support to countless people with ichthyosis, facial difference and disability (and their families). My work has always been about inclusion, representation and visibility for the wider community.  

Someone in the media just asked what my greatest achievement has been. It took a while to answer. I said “defying others’ low expectations of me”. 

It’s an honour for my work to be recognised on a national level, and I hope that other disabled people can see what’s possible.  

There are so many leaders – past and present – who have worked hard for disability rights, and I am thankful to them for teaching me so much. We are a strong, resilient and hardworking community and I’m proud to be a part of it. 

I am excited to continue to do work in the skin condition, appearance diversity and disability spaces, and the media, literary and arts communities – and beyond. I have some big plans.

While I’m proud to be an Australian, I didn’t want to mention this award yesterday as I don’t believe it’s a day for celebration. I strive for a more equitable Australia in all of my work, and this includes recognising and working with First Nations people. 

Thank you to everyone who believes in me – family, friends, colleagues, readers and strangers.  

It’s an honour to be included among great people including some  of my faves – Tim Minchin, Rebekah Robinson and Georgie Stone, Jane Turner, Peter Combe and more.

Watch a video about my OAM on SBS.

Read about my OAM on SBS and Australian Ageing Agenda.
See the listing on the Governor General website

My review of Say Hello

[image error]Image: a woman with a red face and short dark curly hair standing behind a counter, resting her arms on a stack of her books. She’s smiling. She’s wearing a navy floral dress.




This is not a review of my book. It’s a review of how my book – that I wrote – has changed my life. 

It’s almost a year since Say Hello came out. 

A year of so many emotions, so much travel and meeting many, many wonderful people. I can’t keep track of the number of people who have posted the orange and pink over on Instagram, or told me they’ve given it to their friend as a present, or who have asked me where they can buy my book for their school or workplace. I’ve signed hundreds, if not thousands of copies. People have been generous with their time (and money), coming to see me speak. Sometimes they give me presents. I marvel at the interest people have, and the kindness. 

The book is selling well. I don’t know what well means to a publisher, but to me, it’s selling well because it’s changed lives. It’s definitely changed mine.

It’s been distributed in workplaces – disability service providers, pharmacy organisations and even to the organisations who have funded my role in my workplace. 

Strangers have stopped me in the street and in cafes to say they love my book. (I am yet to see anyone on the train reading it, but there’s still time!).

The media have been so kind in inviting me to talk about it on their radio and TV shows, and for their newspapers. 

A mother of a little boy with ichthyosis sent me a photo of him watching me on The Project, talking about Say Hello, pointing to the screen. “That’s my friend Carly, she’s got the same skin as me”, he said. Other parents have told me it helps them understand their child’s condition more.

People who feature in the book are proud and thankful. They champion it. I am so glad they said yes to being involved. 

Sometimes I read parts of it aloud at the end of speaking events. I find new things to love about it each time (and also bits that I wish I’d written differently). 

I’ve been to so many writers festivals, libraries and book stores. The writing industry is lovely. My Mum has a new outlet as #FestivalMum. 

Ensuring my book launches were as accessible as possible was really hard – I had to both impress book stores and also demand that my audience felt welcome – that they could get in the door, and use a toilet, and have access to Auslan. I want to do more work on this, because so much work needs to be done. 

Disabled people relate to it. Some people have told me I’ve helped them accept their disability and appearance diversity. They tell me they’re more confident to tell their story, or share their photos. Those comments mean the most to me.

Non disabled people have recognised their privilege and ableism through reading it. These comments wow me, because I am actually getting somewhere. 

People still ask me to work for free, but far less (because there’s a chapter in the book). 

I’ve got to work with people I deeply admire – Ginger Gorman, Kevin Mitchell (Bob Evans), Annabel Crabb, Ruby Allegra, Tess Woods, Erin Somerville, Caroline Candusso and Elisha Matthews launched my book at events around the country. I’ve done panels with Maxine Beneba Clarke and Lindy West; chatted on my favourite podcasts and had incredible editors. 

My agent, Danielle Binks, is the best support a woman could ever wish for. She’s a business support, and also an incredible friend. I’ve become close to my publisher, editor and publicist at HarperCollins too. They’re good people. 

Taxi driver discrimination hasn’t stopped. But at least I can give them a card with my book cover on, and suggest they read it. 

My Mum is my best publicist. I mean, my HarperCollins publicist is great, but there’s nothing like Mama Bear asking a store why they haven’t got Say Hello in a more prominent position.

My husband hasn’t read all of my book yet. He’s up t9 to chapter 13. I should have included more Star Wars references. 

Jealousy is rife. I’ve lost friends. I’ve told many people that they too can write a book if they don’t like my words. But I’m doing ok. 

The ableism in some of the reviews is jarring but not surprising. 

I will never stop my fangirling. I might be 38 years old but deep down I’m that 18 year old girl who squealed in the front row of the a Savage Garden concert. And I’m not ashamed.

I miss my best friend more than anything. She died in April. She features in the book – a photo and a passage that she wrote. She was the first person to order the book online – always supportive. I wish she was here -to laugh with, to shop with and to text funny memes about multilevel marketing “cures” for chronic illness. It’s not fair.

Someone made a sculpture of Say Hello for Readings Bookstore’s 50th birthday. It was part of a bigger sculpture display of 50 Australian books. I was so delighted. He made me a sculpture to keep, and also two album covers – Bob Evans a s Savage Garden. 

I don’t see Say Hello in airport book stores much anymore, but I’m walking through airports because of Say Hello. 

I miss writing. I’ve written very little since Say Hello was completed in November 2018. I cannot wait to write some real long, thoughtful pieces. 

My next book, the Growing Up Disabled in Australia anthology, will be lit this June. 

Thank you so much to everyone who has taken the time to buy, borrow, read, review, recommend and tell me what Say Hello has meant to you. I am forever grateful.

Say Hello has changed my life because I now have a physical resource I can give people that might help them in some way. It’s changed my life because I’ve become more connected with the writing community. It’s changed my life because it’s allowed me to travel and meet wonderful people – many of whom are now my friends. It’s changed my life because I’m now the person little Carly needed.

Five stars to me, and five million stars to you.

My 2019 Year in review

My 2019 was huge – busy, successful, sad, fun, accomplished and adventurous. At times I felt like a hamster on a wheel, running at full speed. I haven’t sat still long enough to reflect on what a ride it’s been, so it’s nice to do so now. I have fitted so much in, I’m proud. This is a long one, I’m sorry.

January 

I was in Hoi An – Vietnam – with my Mum from late December to early January 2019. It was my first trip to Asia and I loved it. We mostly did cooking classes, restaurant hopped and had clothes made at the tailor. The weather was humid though cool. And the hospitality was wonderful. We made friends with some Australian, British and New Zealand tourists, and also the hotel manager (who has since visited my parents while she stayed in Australia). I’d love to write some recommendations of activities and restaurants one day. 

[image error]Image: a college of six images – Mum and I in chef hats, vegetables at the market, a table of crispy pancake fillings, lanterns in a food hall, boats and lanterns on the river at night, Mum eating and smiling.

As soon as I started work back at Melbourne Fringe, I commenced my book tour for the release of Say Hello. Most book tours are around three weeks, and comprise launch events, media and book shop visits, but I wanted mine to stretch because I wanted to continue working at Fringe two and a half days a week, and also didn’t want to be on and off planes every day – that would not have been good for my health, especially in the hot weather. My book tour was from January to May. Melbourne Fringe has been incredibly good to me with my varied work days because of travel – and I’m very grateful. 

[image error]Image: woman with ref face and shirt dark curly hair, standing behind many piles of her books. She’s smiling.

The first stop of my book tour was signing books at Booktopia. I signed around 300 and it took less than an hour – honestly, I expected longer. It was fun to see the books being packed in the warehouse. Then I recorded an interview with Mia Freedman for No Filter. 

The following week was the start of the many book launches around the country. It was at the Wheeler Centre in Melbourne on an incredibly hot evening (45 degrees!). I was so hot from the very short walk from the taxi to the venue that I had to cool myself down by lying on the tiled floor of the toilet – the antithesis of glamour. My incredible agent Danielle Binks was there to calm me, get me food and ensure I signed 250 books from Readings. This event was hosted by Kevin Mitchell (Bob Evans) and it was everything I could hope for – warm, friendly, packed with people despite the heat, and funny. 

[image error]Image: Two People smiling near a bright window.

Next stop was The Project, on the Monday before Say Hello’s official release. It was live TV and they were so great in preparing me. I sore this photo of Chaz, who also has ichthyosis, watching me on TV. Representation matters.

[image error]Image: a small child watching me on tv, his back s to the camera.

February 

The book tour was in full swing – countless radio interviews (ABC, TV (ABC News Breakfast, Studio 10), podcasts (Wil Anderson, Shameless, Better Reading, ABC Conversations and more) and newspaper and magazine interviews (with Ben Law for Good Weekend, Mindfood, The Border Mail and more). All of the media for Say Hello can be found here.

I went to Sydney for my launch at Newtown Newtown Neighbourhood Centre – I was interviewed by Annabel Crabb. We had so much fun! 

[image error]

I also recorded the audiobook, which took three days and my voice.

I went to Perth to Perth Writers festival – what a gorgeous experience that was. The hotel was lovely and so were my events. I launched Say Hello with Tess Woods who has become a good friend, and did panel events. 

In my down time in Perth, I caught up with many dear friends who live there, saw a brilliant show (The nature of why) and ate some really good food. I also spent time with writers I admire, and hung out with Jordon Steele John for morning tea and an interview. 

March

I got to go home to Albury for a few days – I presented writing sessions to high school students, had a 300 person launch at The Cube in Wodonga (hosted by Erin Somerville from ABC) and then to Wagga where I chatted about Say Hello to Caroline Candusso from Papel Paper. It was at these events so many people from my childhood turned out – school friends, nurses and doctors and teachers. It was so lovely – and unexpected! 

I had a Brisbane launch event, hosted by one of my best friends, Elisha Matthews. It was such a full room, and I was chuffed that so many people with ichthyosis were there! Pearly Sprinkles baked me biscuits with my face on them! 

[image error]Image: Elisha and I smiling. I’m holding the box of biscuits.

I also met the amazing Kurt Fearnley for the first time after being online friends for years. He’s wonderful and we talked like we’ve known each other forever. We recorded his podcast, Tiny Island.

[image error]Image: a man and a woman, sitting and smiling. The man has a beard and tanned skin, the woman has a red face. She’s holding her book.

And later that week I met Penny Wong – a politician I’ve admired for years. She spoke with such power and conviction. She and Jordon Steele John were presented The McKinnon Prize for outstanding political leadership.

Maxine Beneba Clark asked me to write for Growing Up African in Australia last year, and it was launched in March. Many of the contributors read their chapters at the launch. After the event, I went to see Roxane Gay speak and met her briefly, giving her Say Hello and Growing Up African.

April 

I went to Canberra for my book launch in April – Ginger Gorman interviewed me – we both wore our pyjamas.  Ginger and I have had a similar year with our book tour. We got to sit side by side, signing books and drinking wine.

[image error]Image: two women sitting signing books, drinking wine.

I went to my first sewing class hosted by Bron Sheridan, and it was fun. I learnt new skills and met new friends. She’s an excellent teacher.  I did a few more classes through the year.

[image error]Woman with red face and short dark hair tied back, standing next to a tall white woman. They’re both wearing colourful dresses

On 23 April, my best friend Camille died. She was diagnosed with a rare, aggressive cancer in January and lived life to the absolute fullest in those last few months. I am devastated. I haven’t processed it yet. She asked me to talk at her celebration of life, which as an honour. Camille touched so many people, bringing us together. Losing her is enormous.

[image error]image: two women wearing bright clothes, smiling.

I also did a beautiful winery event for the Wheeler Centre at Montalto – it was a cold night, but so many turned out and the food was delicious.  Mum and my agent Danielle Binks came to support me.

[image error]Image: mother and daughter standing in a winery, under a sculpture of a girl pointing. They’re wearing bright clothes, smiling and laughing.

May 

I flew to Adelaide for my final book launch event – I was interviewed by Ruby Allegra, disability Instagram celebrity. It was a great chat, but a bit of a blur. Lucky it’s recorded. 

By this time I was exhausted. I remember seeing Kevin Mitchell at the airport and being both excited and saying that I just wanted a sleep. 

It was a surprise to meet my friend Rick Guidotti for dinner one night – he was here for a project with Professor Ingrid Winship. Later that week Rick and I had a little photoshoot after breakfast. I am so happy with the pictures.

[image error]Image: a selfie of a man and a woman smiling.

I was a panelist on The Drum one Friday night in May – it was the most terrifying media I’ve done as I felt so out of my depth and I couldn’t see the panelists in Sydney. I haven’t watched it yet.

June

In June I finally booked in to see a grief counseller and then took some bereavement leave – which was much needed. 

I stayed over at Danielle’s house and did some Mornington events – a school talk and also a book event at Farrell’s. 

One of the highlights of my year at Fringe happened in June – I moderated a panel on embedding Access with Sarah Ward, Emma J Hawkins and Bec Matthews at Arts Centre Melbourne. We talked about the importance thinking about Access at the  start of creating live performances, and they shared their amazing work as performers.

I also gave panel talks at the Emerging Writers Festival and Progress (on the same day!), and then again as a keynote at Progress the following day – urging them to be more accessible. 

July 

At the start of July, I began a paid Instagram partnership with T2 Tea – this was a perfect fit. I was a T2 ambassador for six months, paid to drink tea. Admittedly, I probably bought almost as much tea as I was paid! 

Adam and I went to a wedding outside of Sydney – it was a beautiful event in the country. He has totally overhauled is style this year, and I’m here for it. He looks amazing.

[image error]Image: a woman and a man standing outside, in front of a large sign that reads “Belgenny Farm”. They’re wearing bright clothes.

After the wedding I flew from Sydney to to Adelaide to work with Access2Arts South Australia on delivering a personal branding workshop, and talk about writing on a panel with Gaele Sobbot, Kate Larsen and Gayle Kennedy. 

I went back to Brisbane for Write Like a Girl at st Rita’s – this was a brilliant day meeting young writers and readers, and grown up writers including Jenna Guilliame and AJ Betts. 

[image error]Image: Two women smiling,

I got to hang with Elisha again – she stayed in my hotel and we talked and ate – I so wish we lived closer. A group of Brisbane friends came to the hotel for dinner, and one baked us a Penis unicorn cake which we took up to my hotel room. We laughed and laughed and filmed a funny Access video. I also met some friends from the ichthyosis community and we went to GOMA. I had a giant bubble bath. It was a lovely stay. 

[image error]Image: Woman with red face and short dark curly hair in a bath. It’s full of bubbles. The bubbles are up to her face. She’s smiling and her arms are in the air.There are so many bubbles.

Danielle and I saw a brilliant musical – Come from Away. Cannot stop thinking about it, months after.

Mum and I went to Sydney to film It Takes Two for ABC 7.30 – producer Monique Schafter was wonderful to work with. We had a lot of fun and the response was incredible.  

August 

Byron Writers Festival was from 1-4 August. It was so wonderful. I got to see a lot of events – which doesn’t happen a lot when I’m at Melbourne Writers Festival – and also spend quality time with writer friends and my publishers. I had three sessions – a solo talk about Say Hello to a group of aged care residents (and a brilliant artist sketched me!), a panel talk with Maxine Beneba Clarke and Sara El Sayed about Growing Up African in Australia, and a talk on writing disability with Caro Llewelyn and Jessica White. 

[image error]Image: me between Maxine and Sara at Byron Writers Festival

My Mum came with me, earning the moniker #FestivalMum. She absolutely loved the sessions and made friends with (and fangirled) a number of writers. It was very funny to see her swear when I told her about a scheduling conflict between Ben Law and Sisonke Msimang. 

[image error]Image: Mum and I at the writers festival, smiling.

And one of the best things about Byron was meeting up with Tash – a blogger friend who I don’t see often, and Adelle – a gorgeous friend from Albury who now lives on the Gold Coast. We were close when we worked at Kmart and I so enjoyed hearing what she’s doing now. We had lunch and she saw me talk.

Forever grateful for the travel allowing me to see friends. 

[image error]Image: with Tash, at the Byron Writers Festival

While in Byron Bay, I started editing Growing Up Disabled in Australia – Reading the 366 submissions and choosing them for the anthology. This was a wonderful task – the quality of writing was excellent and the hunger to be published and to read is evident. This took me through August and September. 

I also went to Warrnambool to give a keynote speech and three schools talks. I worked with a wonderful woman from a school program – she drove me around and we got on very well.

My friend Linda and I saw Killing Heidi twice, and we also also saw Bob Evans.

[image error]Image: Three people Looking happy, drinks in hand.

September 

September was a very busy month. At the start of the month I had two Melbourne Writers Festival events – a school talk for Growing Up African in Australia with Maxine Beneba Clarke, Guido Melo and Magan Magan, and then a spoken word event where I wrote and read a new piece about family. 

[image error]Woman with red face and shoulder length curly hair, pretend lying on a bed. She’s wearing a colourful dress and black jacket. She’s holding a #MWF19 program. The bed is metallic red and pillows are gold.

Melbourne Fringe Festival was on for almost three weeks in September – it’s a lot of fun to work at. As Access and Inclusion Coordinator, I’m really proud of all of our Disabled and Deaf and artists – they put on incredible shows and I can’t wait to see their careers soar. It was also great to see many artists implement access provisions. I saw some wonderful shows this year, some I will be thinking about for a long time. I am also really proud of the Producers Guide to Access that we developed.

I also saw Fleetwood Mac with my friend Linda. We books tickets at last minute and were so glad we did – we had a blast. Neil Finn and Stevie Nicks doing  Don’t Dream It’s Over and Landslide was my highlight. 

October 

I worked with some editors, including mine at Black Inc. books on delivering an editing diverse voices workshop – I so want to deliver more like these! 

I went to Albury Wodonga to deliver sessions in the Stella Prize girls write up day – this was brilliant. I met wonderful young people and saw them create beautiful poems, and also worked with brilliant women writers – Racheal Oak Butler, Desiree Dallagiacomo, Lorin Elizabeth and more. I felt so inspired by them. 

Black Inc announced the Growing Up Disabled contributors, which was so exciting. I’m so proud of all the contributors (and those who wrote but didn’t make it in, too). You’re going to love this anthology.

I was invited to speak at the Ubud Writers Festival – my first international writers festival. While it was  very hot and humid and my skin became extremely sore, it was a wonderful experience. I moderated a panel on fashion, spoke on a panel about feminism (with writers including Lindy West!) and presented a workshop on accessibility and inclusion in the pub,owning industry at an arts centre outside of Ubud. 

[image error]Work/life goal achieved. A feminism panel at Ubud Writers & Readers Festival – Eliza Vitri, Krissy Kneen, Maeve Marsden, Lindy West and Fiona Wright

New Year’s resolution – make time for the people who make time for me.

[image error]Image: woman with red face and short dark hair tied back with a colorful headband, standing near a brick wall smiling. She’s wearing a back neon floral dress over wide legged denim pants, sandals and a brooch that is an echidna in a pot. Her hands are by her side.

There is a weakness I need work on to in 2020. I’ve become more aware of it this year especially, as I’ve had lots of big milestones and events. So this is my resolution.

I need to give time to those who continue to show up, and not spend so much time focused on those who don’t. 

So many people make time for me, appreciate me, celebrate me. They come to my events, bake me cakes and biscuits with my face on them, rearrange the bookshelves in stores so Say Hello is facing outward. They laugh with me and cry too.  They’re not only there for me in my work (which is a huge defining factor of who I am), but in my private life too.

I can count on friends who are on the other end of a text message or phone call, who keep my secrets.

I have friends who meet me for dinner when I’m in their city, and want to catch up for a drink when they’re in mine,

I am part of a wonderful disability community whose work I read, watch, buy, respect and celebrate – and they reciprocate.

There are dozens of people in my life (who I know personally and who I don’t) comment on every single social media post I make.

I have an incredible team of people who help me achieve my career goals – in writing, speaking, travel, arts work and more.

Strangers write me messages to tell me how my work has made a difference  to them.

Women on Instagram tell me they bought a dress because I wore it.

I can always count on my Mum for advice and to be my confidante.

My husband supports me fully.

And I’m so grateful for everyone. I am so lucky to be surrounded by people who hold me close, even when we aren’t in close physical proximity.

Yet I feel a sense of FOMO (Fear of Missing Out) – not from me not being there or doing something, but from others not being there for me. At big events, I look around for those who I expected to be there but didn’t make it. I keep trying with people who have let me down time and time again. I get fixated on those who didn’t come, rather than paying full attention to those who did. I notice those who are interacting with others on social media instead of me.

And I still notice those who bully me. Who speak badly of me when they think no one is looking. Who don’t support my work. Who are jealous. Who don’t approve of me or my work. I screenshot and analyse their commentary, and get really upset and angry.

I need to stop giving time and space to the people who treat me badly. 

I think this is a hang up from school – where I just wanted to be liked, and have people come to my party. It is also about my high expectations – of myself and of others – of making time for friendship, and of treating people with kindness. But they’re not going to change, And as an online writer, it can be easy to focus on the few negative comments rather than the thousands upon thousands of lovely ones,

Over the break I felt really flat after seeing an old friend who has drifted away. Conversation was difficult and I resented her for not making it to one of my recent events. And the next day, I saw some other old friends by chance. We laughed and talked and hugged like no time has passed. I immediately felt better, and realised these are the people who I need to keep close.

I have beautiful friends and colleagues, and a wonderful online community. It’s time I prioritise them. I need to quit the FOMO and revel in the joy of those who are present.

That’s my goal for 2020. Thank you to everyone who is there for me, I promise I’ll be there for you too.

Announcing the Growing Up Disabled in Australia contributors and cover

Black Inc. is pleased to announce the contributors to its new anthology, Growing Up Disabled in Australia.

[image error]Image: a book cover. It’s an abstract drawing featuring pink, yellow and purple coloured scribbles  on a real background. “Growing Up Disabled in Australia” is in white capital handwritten style text in the middle of the book, and “Carly Findlay” in capital yellow text at the bottom.

Editor Carly Findlay says: “I am so excited to announce the contributors for Growing Up Disabled in Australia. It was such an honour reading through over 360 submissions – one of the best jobs I’ve ever had. The quality of writing is extraordinary, and there is a definite hunger from disabled people to tell their stories (and to read others’ stories).

“Choosing the contributors was a hard task – I wish we could have included many more. I’m proud of everyone who submitted and encourage those who didn’t get into this anthology to keep writing and find other opportunities for their work. 

“This anthology shows the diversity of disability – not just in terms of impairments, but also experiences. I took an intersectional approach when selecting the work.

“I can’t wait to launch this book and see these writers fly. I hope it creates a sense of identity and belonging to a community – for the contributors and for readers. 

“Congratulations everyone.”

Contributors are:

Alistair Baldwin

Andy Jackson

Anna Whateley

Astrid Edwards

Belinda Downes

Carly-Jay Metcalfe

Chantel Bongiovanni

Cubbie Mako

Dion Beasley

El Gibbs

Eliza Hull

Emma Di Bernardo

Fiona Murphy

Frances Henke

Gayle Kennedy

Hannah Sidney

Iman Shaanu

Isis Holt

Jane Rosengrave

Jasmine Shirrefs

Jessica Knight

Jessica Walton

Jordon Steele-John

K.Z. Barton

Kath Duncan

Kerri-ann Messenger

Khanh Nguyen

Kit Kavanagh-Ryan

Lauren Poole

Lucy Carpenter

Marla Bishop

Melanie Rees

Natalia Wikana

Oliver Mills

Olivia Muscat

Patrick Gunasekera

Ricky Buchanan

Robin Eames

Sam Drummond

Sandi Parsons

Sarah Firth

Tim Slade

Todd Winther

Tom Middleditch

Tully Zygier

Yvonne Fein

Growing Up Disabled in Australia will be the fifth book in the highly acclaimed and bestselling ‘Growing Up’ series from Black Inc. It will be released in June 2020.

The beautiful cover features an artwork by Wendy Dawson, part of Arts Project Australia.

You can preorder the paperback and ebook now.

My speech for University of Sydney’s Disability Inclusion Action Plan launch

On Tuesday 24 September, I was invited to speak at the launch of Sydney University’s Disability Inclusion Action Plan. A number of esteemed disability leaders spoke at the launch – Doctor Ben Gauntlett (Disability Discrimination Commissioner), Doctor Sheelagh Daniels-Mayes and Professor Jennie Brand-Miller from University of Sydney, as well as Vice Chancellor Michael Spence who concluded the launch. Ben in particular talked about the importance of universities “having a critical role in changing the mindsets of people with disability”, and how important universities are at making people feel proud and connected. You can read the Disability Inclusion Action Plan, as well as the implementation plan, on the University of Sydney website .

[image error]Image: five people standing and sitting in front of an orange University of Sydney Disability Inclusion Week banner. A black guide dog is also in the picture. From left to right: Sheelagh Daniels-Mayes and her guide dog Nina, Michael Spence, Ben Gauntlett, Carly Findlay and Jennie Brand-Miller.

I was so excited to see some friends in the audience – Sarah and Sarah who I know from blogging back in the day, and Robin, who is a talented writer and activist.

[image error]Image: two people smiling. The person on the left is a light skinned person with brown and teal hair, glasses, a red T-shirt and black pants, sitting in a wheelchair. The person on the right has a red face and shoulder length curly hair, and is wearing a navy and purple dress and black jacket with a rainbow brooch on it. Behind them are rows of chairs.

Thank you to the many people who helped inform my speech – those who responded to my call for stories of disability in academia on social media, and also to Elisha for collating the research. And thanks to the University of Sydney for asking me to speak.

Here is my speech.

I acknowledge the traditional owners of the land, the  Gadigal people of the Eora nation – the traditional owners of the land. I pay my respects to Aboriginal elders, past present and future, extending my friendship to those who are in the room today. I am thankful to Aboriginal people for looking after our land so well – your care allows us to work and play on it. Thank you for sharing your traditions, stories, art, culture and wisdom with us. Sovereignty was never ceded and treaties have never been signed. This is stolen land.

Furthermore, I recognise past and present leaders in the disability rights movement – thank you for paving the way for our freedom and equity. Some of you are in this room today – thank you Ben, Sheelagh and Jennie for your words of wisdom. I’d also like to recognise my privilege, because many disabled people aren’t afforded the same opportunities as me becaue of physical, attitudinal, systemic and financial barriers – and they should be.

Just a note on language – I use the term disabled people – because I see disability as part of my identity. If you feel more comfortable using people with disability for yourself and others, that’s ok too.

I believe disability creates a community and culture among those of us who are disabled, and disability contributes to society’s culture, too. So many people avoid the term disability, or disabled, but doing that denies us of our identity and culture. I am absolutely ok with saying the words disability and disabled – they’re nothing to be ashamed about, they’re not slurs. #SayTheWord

I also believe in the social model of disability – it’s recognised by the United Nations, is human rights based, and focuses on environmental and attitudinal barriers as being disabling, rather than seeing a disabled person’s body as a deficit. I note that while the barriers of the social model were addressed in the University of Sydney’s DIAP, it wasn’t named. 

Congratulations on the launch of the University of Sydney’s Disability Inclusion Action Plan, and the achievements that came from the previous plan. Its exciting to see the way this plan will help break down barriers for disabled people working, studying and living on campus. It was especially exciting to hear Jennie say that some old buildings have been modified to comply with the Disability Discrimination Act – as the late great Stella Young said, “the human right to access is more important than the human right to nostalgia”.  [Quoted by Nelly Thomas in her eulogy for Stella Young, December 2014.]

I began my undergraduate degree almost 20 years ago. I really wanted to study journalism but my unpredictable health and the high cost of living away from home meant I couldn’t move from a rural city to a big city – yet. I did a Bachelor of eCommerce at La Trobe University in Wodonga. While I didn’t enjoy my degree, I graduated with some new knowledge and skills that allowed me to get a sensible and stable job in the government which lasted around 15 years. The best thing about my undergraduate degree was the friends I made – many of whom are still very close today. I made friends with Ben, because he asked me and another small girl to carry his beer up the hill at O Week. I did, and complained all the way. And Amber, the only other person I know to talk as much and as fast as me, and I told her to please be quiet in the computer lab because I was actually trying to work. We hit it off then. I catch up with them when I can – we all live busy lives in different cities.

I also didn’t identify as being disabled during my undergraduate degree, even though I had the rare severe skin condition Ichthyosis from birth, and I missed a few lectures due to hospitalisation because of severe sickness related to my skin. More on identifying as disabled soon.

During my undergrad I studied a law subject. Others were convinced I’d be good at it because I was good at English. But missing lessons and not being able to do group work because of a stint in hospital meant I failed the assignment, and I had to re-do it. I didn’t even think to ask for special assistance, I was finally not being treated as different from my peers (compared to at high school), and I wasn’t about to single myself out then. 

 I went to university again when I worked at the government – I did a Master of Communication at RMIT in Melbourne. I loved it because I had longed to study journalism since I was 15, and I was just so interested in the subjects. There were no exams, and certainly no accounting or law, and I didn’t fail any subjects. 

I signed up to the disability liaison unit – I finally started to realise that I might need help – though disability was not my identity then. I called on the DLU when I was sick and in hospital. They never connected me with other disabled people though, and in hindsight, I would have loved that. 

I took six or seven years to do my masters, because I worked full time and managed my health. I enjoyed my studies and was appreciative of the support I received. It was a long time doing a 3 year course but I wouldn’t change it. 

I started a blog mid way through my masters, taking writing seriously. Some of my blogging friends are here today. I wanted to develop a portfolio of work so I could work in the media. Well that escalated quickly. I was soon writing for the media – starting with a government website and then other news websites . When I did my masters thesis, I wrote about how blogging gives people with chronic illness a sense of identity. 

I first began to identify as chronically ill and disabled when I mentored young people at the hospital in my mid twenties, a few years into my masters. They all had different chronic illnesses, and despite our diagnoses, we experienced the same barriers – time off school and work, impairments, physical barriers, lots of different doctors, and of course discrimination. I realised I too am chronically ill, and disabled, and that it’s ok to identify as such.

As I wrote on my blog and for the media more and more, I got to know myself, and learn about my disabled self, and other disabled people. I auditioned for a spot on No Limits – a disability led community TV show. It was a blast – again I learned about disability politics and pride, as well as interview skills, production skills and thinking on my feet – but I never mastered the auto cue. We had support workers through the day, but it was the building that was the biggest barrier for our cast and crew. No Limits was filmed at RMIT University. One of our cast members could only go to the toilet before and after the filming days – which were often 6 hours long – because the university didn’t have accessible toilets. She went to travellers aid at the train station, where the toilet had hoists, and she had assistance. 

I occasionally lecture at Melbourne University, in a genetics class. I know, I’m not even a doctor! I talk about living with a visible difference, and also the media portrayal of rare genetic medical conditions.  I work with the head of genetics at the university and the Royal Melbourne Hospital, as well as some other staff, to deliver a yearly lecture. The students will one day work in the medical field, so it’s important they hear lived experience from actual people with genetic illnesses. 

I’ve done this for the past seven years. I had started off doing two half hour lectures a semester, but now I deliver the two over an hour due to work commitments. Generally it’s been great, but I’ve had two difficult moments that stuck out and made me realise how difficult it is that my own story crosses over into my work. They’re relevant for today. 

The first time – the Doctor set the scene by telling the students to communicate respectfully with patients who have visible differences, and then introduced me.  I talked about how life with a genetic illness and visible difference is not a tragedy, talked about intrusive questions, other people’s fear of our faces and my time on You Can’t Ask That. It was a lot of fun and the students seemed to respond well. 

Afterward, as I was packing up, with great irony, one student quietly asked me a very intrusive question. “If you decide to have children will you delete the gene or not go ahead with the pregnancy?” I told her that while there is genetic testing and selection, this is an example of the very intrusive and personal questions I get asked. The Doctors were surprised she asked me that, and said it made them realise the level of privacy that’s lost when living with a visible difference.  (A person without a genetic condition or disability is less likely to be asked about their pregnancy plans.) 

The second time, the year after, I gave my first one hour lecture. 

Again, the irony!

I was not able to stand giving my lecture for an hour. The course assistant (a medical student in the class) found me a stool.

“Oh no, you can’t use it”, he said.  

The stool  had a piece of paper taped to it. 

“This stool is for a mobility impaired academic only”. 

“I am a mobility impaired academic. I’ll be talking about the assumptions made about visible and invisible impairments today.”

It was awkward.

I really hope I helped shape the way they start their medical careers.

But that’s the thing. People don’t see disabled people in leadership positions. They don’t often see us presenting the news or performing on stage. They don’t see us as more than inspirational or objects of pity.

And they don’t see the diversity of disability. The two people who made my lectures awkward had probably never encountered a disabled academic, and expected disability to look a certain way. 

Because spaces aren’t built for us. Spaces aren’t built for us to lead or to teach, and even to learn. 

This lecture theatre wasn’t built for a lecturer in a wheelchair. Even students in wheelchairs can’t access the front stage should they need to present. A chair was not  on hand for people who cannot stand for long periods of time. The only option was to stand, and so it’s assumed that we have to be fit and able to deliver lectures. 

But we can sit. We can deliver lectures remotely. Hell,  most of my work is done in bed. I once gave a talk to chronically ill writers, giving them permission to work in their pyjamas, while I wore my pyjamas. They were so thankful. 

And I strongly believe that safe spaces – physical and attitudinal, backed by disability inclusion action plans like this one, benefit everyone. Make space for leaders in academia to feel confident disclosing their disability and using mobility, hearing and communication aids in the university setting, so students can see what’s possible for them. 

Because I haven’t been to university for a while, and I lecture occasionally, I asked my social media followers their experiences in academia. 

Dozens of, if not close to a hundred people reached out, including some from the University of Sydney. 

Commonly, students and academics cited the lack of compliance to access to premises standards by universities. Many recognise that these buildings in some cases are old but universities have laxed to make physical accessibility a priority. Both students and academics identified inaccessible buildings, lack of accessible facilities and disability parking as stressors to their participation. Even simple things like a space in the row for wheelchairs rather than forcing them to sit to the side in lectures are rarely accommodated.

It was noted numerous times that supports and adjustments that were commonly recommended at a basic level, were not afforded to those at a higher level. People who were attempting to complete a PhD found they weren’t supported in the same way that they had previously been. Many had been offered the suggestion of dropping out rather than being assisted to participate and achieve. In one case a student was moved to another class because a professor did not want to work with her. The general feeling is that the expectations and outcomes of people with disability are still quite low and so higher achievement is not supported.

Many students and also some academics, expressed that their peers were not often supportive and they were faced frequently with ableist comments and attitudes. Often to the extend that it deterred them from wanting to continue.

While there are facilities provided for students to attend classes remotely, these same facilities were not made available for participation in events. In particular one student noted that they were unable to participate in Disability Inclusion Week events at the university they attended because only physical participation had been provided for. They were perplexed as to why remote participation was not considered since it’s already available.

Many students applauded that their universities had finally, as recent as 2018 for most, developed a Disability Action Plan. They did note however that the plans were a lot of words and very little action. Unless they were able to self advocate and doing so loudly, their issues were not acknowledged and for that reason many fall through the cracks and drop out.

It was noted also that while there were supports in place to address adjustments for student participation the same was not afforded to the academics in being able to do their job. 

Generally people involved in academia whether it be in learning, or working capacities, expressed a recognition of progress for people with disabilities but admit there is still more to be done before equitable participation and inclusion is achieved.

One friend who is completing their PhD said:

“Behind every good leader there must be a good mentors who are collaborative and focused on collective growth.  It’s very rare for people with disability to find good respectful mentors who truly support growing and learning together and prioritise active support and access in action.  Too many people say they believe in inclusion, but then say access it too expensive, to time consuming, too distracting. 

The best teachers, educators I had as a student were the colleagues who organised large print materials, hearing access, captions without fail week to week, meeting to meeting.  They were also the colleagues who thoughtfully facilitated group meetings with access etiquette outlined and normalised and modelled to everyone.  They are the people who bring everyone along for the ride on access and inclusion, seeing it as a whole community effort and responsibility.”

I’m so grateful for those people for sharing their experiences.

One thing that’s I think is so important is making spaces for disabled people – both to lead and work, and to come together as a community, with other disabled people. I love Disabled Honi – the disability edition of the student newspaper, Honi Soit. It’s the second ever disability edition – created by disabled people, and filled with stories, art and resources. It beams with disability pride. More of this please. Finding the disability community is life changing and affirming. 

I’m excited about the University of Sydney’s Disability Inclusion Action Plan – it’s a clear commitment to making a more accessible and inclusive university. I’ll remind you of the objectives.

Objective 1. The University incorporates the rights and opportunities of people with disability in all policies and planning

Objective 2: The University of Sydney is a higher education provider of choice for all students

Objective 3: The University is an employer of choice for people with disability

Objective 4: The University’s communication and digital environment is accessible to everyone

Objective 5: The University provides an accessible built environment to everyone

Objective 6: The University provides leadership to the community in developing an inclusive Australian society

Disabled people helped create this plan that’s fundamental to inclusion. And this supports the disability community’s slogan – nothing about us without us.

Now it’s up to the university to walk the talk – or wheel the real – and implement the plan to create meaningful change for disabled people. 

PS: my next career goal is to do my PhD, and I can’t wait to return to university. 

Thank you for your time today. 

If you want me to speak at your event, get in touch with my speaking agent . And if you want to buy my book, Say Hello, you can find out where to here .

Book review: Strangers Assume My Girlfriend is My Nurse by Shane Burcaw

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Spoilers ahead!

I have been following Shane Burcaw on Instagram for a few years and was excited to see he has a new book out – Strangers Assume My Girlfriend is my Nurse. I flew through the book on the plane (excuse the pun!) – it was so easily readable, and relateable. I am loving #OwnVoices Books!

Shane has a blog, he and his fiancé Hannah Aylward have a YouTube channel – Squirmy and Grubs – and their respective Instagram accounts are wonderful (and have huge followings). This book is a wonderful extension of Shane’s online presence.  Strangers Assume My Girlfriend is My Nurse is Shane’s third book. 

Shane is in his 20s, he lives with a degenerative disease that results in a visible difference.  He addresses this up front,

“First of all, I have a disease. The disease, which I was born with, is called spinal muscular atrophy. It causes my muscles to waste away as I get older, so I was never able to walk or even crawl. I’ve used a fancy schmancy electric wheelchair since the age of two, and as of writing this at the age of twenty-five, I’m starting to lose more important muscle function, like my abilities to breathe and swallow and speak. Fun, right?”

He writes about his body and the barriers he experiences in a self deprecating way, but never with internalised ableism.  The book is very, very funny. Shane is a great writer – thoughtful and able to articulate the universal feelings of being disabled well.

Shane’s impairment as well as his access and care needs are vastly different to mine, but I related so much to his experiences of low expectations, curiosity and sheer rudeness of others. He too has experienced exclusion and bullying, prayers from strangers, and the assumption that his life is terrible because of his visible difference. 

He uses humour to counter this – he developed this strategy in the playground when kids asked him about his body and his wheelchair.

“These questions cut deep, not because I was ashamed of the chair, but because I was aware that other kids viewed me and my chair as different. I didn’t want to be different. The different kids didn’t get invited to sleepovers. The different kids played alone on the playground. My sense of humor was thus born out of necessity, as a way to overcome that first social barrier created by my wheelchair.”

I really resonated with this – I had to develop confidence and humour to allay people’s fears and to show them I was more than my appearance from an early age. 

The other thing I found really interesting was his struggle with his sense of identity as a disabled person (but never shame) and as disabled writer. There was discomfort yet power from meeting others with Spinal Muscular Atrophy when he was in his 20s – they taught him to become less defined by his disease. I really admired this admission and growth, and it’s something I also grapple with too. How do I just be Carly when so much of my identity and work is linked to ichthyosis and disability?

Shane does a great job of explaining systemic barriers he and other disabled people experience – like the airline industry’s inability to accomodate disabled passengers well, the ableist concept that disability is a worse fare than death, and of course, the low expectations from services such as restaurants (he still gets children’s menus!). He writes about the issue with inspiration porn, but without naming the term Stella Young coined. He gives examples like strangers being inspired by his relationship with Hannah, and strangers buying him gifts. In the past, Shane has been criticised by a disability activist for perpetuating inspiration porn, but I feel he’s grown in this aspect in this book, and is now firmly against it. This really demonstrates that disability activists should be given the chance to learn and grow.

He also writes a lot about “making it work” – with adaptive technology like Alexa, as well as Hannah modifying a child’s booster seat for airline travel, introducing him to soft stretch skinny jeans from the girls section of H&M for ultimate comfort, and his Dad teaching himself how to take Shane’s wheelchair apart and put it back together should an airline ever dismantle his wheelchair again. 

Shane has an incredibly supportive family and partner, but he has been troubled by the burden complex for years (something I was often worried about in the workplace).

“People are programmed to feel bad for me, knowing nothing about the quality of my life. At times, the outside perception that my life is negative and sad became so powerful that I internalized it and developed harmful beliefs that I was a burden to even the people who love me most. It was largely my responsibility to shake off that idea and prove my worth, to show people that I am just as funny, intelligent, sexy, hardworking, adventurous, and successful as anyone else.”

Shane also writes in great detail about sex – both with partners and masturbation.. He shouldnt have to, but but he is incredibly generous with explaining the mechanics of sex in a factual and humourous way.  The beauty of Shane’s writing, social media posts and videos addressing questions about sex is that he does it on his own terms, with humour, and often boldly hinting at how inappropriate this level of intrusion is. 

He met Hannah, now his fiancé, in 2016, after she watched a documentary about him online. She got in touch via email, and they bonded straight away. Their love story is just wonderful. He details their adventures through the book – navigating a new relationship and people’s ableism, cute dates and finding his own manly independence and travelling the country as a couple. 

Hannah is incredible as a caregiver. Not in a pitying way, though. Through recalling anecdotes, Shane shows Hannah as practical, loving, and always willing. She is his caregiver, but also his lover. He continually describes the closeness that has been created by Hannah caring for him. In a recent video, the pair addressed the offensive claim made by Dr Phil that “100 out of 100” couples in interabled relationships (as Shane describes his) will fail,  because the non disabled partner can only be the caregiver or the lover – not both. Hannah is very much both. Their relationship is stunning. They are #RelationshipGoals.

He describes their love – a lot of which is linked to caregiving:

“Here I was in the midst of a full-on catastrophe, ravaged by what was about to be an atomic finale. I was cold and sweating and scared and naked and vulnerable, and yet, I felt no semblance of the embarrassment that you might expect. In fact, as she lowered me onto the toilet, and the guttural splashes filled the room with sounds and smells, she began to laugh and rub my back while keeping me steady atop the toilet. Love is a difficult feeling to describe, but I can assure you it feels something like that moment, when the whole crazy mess of it reduced me to shaking laughter in her arms.”

Shane worried that Hannah wouldn’t be comfortable with intimate and time consuming aspects of caregiving; he worried he would be a burden. But she always reassured him that he wasn’t, and their relationship felt so very easy and comfortable from the start.There is a chapter in the book where Shane experiences what it might feel like for Hannah to be his caregiver – and he writes,  

“Suddenly, it seemed so obvious to me what she had been telling me all along. When you love someone with your whole heart, there’s nothing you won’t do to keep them safe and comfortable. It’s not a sacrifice and it’s not a burden; it’s a natural instinct.”

He explores the prospect of a cure, or a drug that has the power to halt the progression of SMA – but not guaranteed to provide the same outcome in all patients, and this leads to  an introspection on how others see him – if even those close to him were excited for a cure for him, did they faintly harbour ableism too. Shane articulates my thoughts and feelings on this so very well: 

“It wasn’t until I began receiving the injections almost a year later that I finally pinpointed why I felt so ambivalent about the drug. The potential to be “cured” of my disease had the unintended effect of causing everyone around me to see anything less than a complete cure as an unfortunate failure, which totally opposed the healthy embrace of my disease that I was working so hard to adopt.”

Strangers Assume My Girlfriend is My Nurse is a collection of essays rather than a memoir. Sometimes they end abruptly, other times they read like a holiday diary. I feel this keeps in style with Shane being a blogger, but it might be off-putting for readers who prefer a more consistent flow.

I really enjoyed this book. It’s activism, but not angry activism. It makes learning about ableism accessible to non disabled people. It models great behaviour. I laughed a lot, admired the writing, and empathised with Shane’s exhaustion at others’ reactions to his body. I think it is especially a great book for young Disabled men to see themselves and know what’s possible for them (travel, a career, romance, pride in self), and also for parents of disabled kids and adults. Thank you, Shane – and Hannah too.

Shane has also written Laughing at My Nightmare  (also the name of his not for profit company/ ) and a picture book called Not So Different: What You Really Want to Ask About Having a Disability .

(I acknowledge this is the second post in a row that’s a book review. It’s so important to me to read books by disabled people, and to review them when I can.)

Book review: Sensitive by Allayne Webster

Spoilers ahead!

I was sent a book called Sensitive by Allayne Webster – published by UQP. It’s a book I wish Little Carly had. I devoured it in a day. 

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SJ wants to reinvent herself in a new town, changing her name. But she can’t change her skin.

Sensitive is a young adult fiction book about a girl – SJ – with severe eczema and allergies. SJ has all the challenges of becoming a teenager, plus living with skin that she just wants to hide.

I found Sensitive very relatable to my own experience with ichthyosis. The overheating, itching, wanting to cover up, the embarrassing stuff like brushing skin from the bed,  the severity of some treatments compared to the skin condition itself, and infection risks, plus the emotional impacts of both medical aspects and of others’ reactions to a visible difference. 

There’s quite a bit of internalised ableism in the book, and also eating disorder discussion and an overwhelmingly overbearing mother who wants to fix SJ to fix herself. As I’ve written previously, my parents did want to find me cures, but gave up when I said enough. I see the cure search so frequently in parents of kids with ichthyosis – desperate and guilty for passing on a genetic illness. 

I thought the themes of jealousy in others with “good” skin were really important – it is easy to fall into the comparison trap when living with a severe skin condition, and often a competition of who has it worse. 

There’s can also be a denial of similar experience when meeting people with different impairments, and I liked SJ’s new best friend Livvy introducing her to Livvy’s overweight mother, which showed SJ that people with visible differences do experience very similar barriers and feelings about our bodies.  I also liked that SJ developed a friendship with another young person in hospital – that happened to me many times. 

I highly recommend Sensitive for young people (maybe 13+) and adults with Ichthyosis, and parents too. Some of the themes were a bit confronting for me, bringing up memories from the past so I suggest setting aside some time to talk about the book with someone. I have recommended it to the Australian and New Zealand Ichthyosis support group. 

Allayne Webster lives with severe eczema  and life threatening allergies, and while this is fiction, it’s autobiographical. The epilogue is a personal account of Allayne’s struggles with eczema and allergies. Own voices are so important. 

I am not sure whether the girl on the cover looks like a young Allayne. Maybe it does, and maybe Little Allayne’s face was not affected (but SJ’s account of her eczema and allergies in the book suggest it was). I really would have liked to see Sensitive have a different cover – one that represented a young person with severe eczema and allergies. This cover showed beauty privilege. A girl with a face impacted by eczema and allergies would really allow Little Carly and other young people with severe skin conditions and allergies to see themselves on shelves. 

Thanks for writing this important book, Allayne. I would love to have an in-conversation event with you one day.

Details about Sensitive are here.

This post is not sponsored, but I was given the book for free by University of Queensland Press – thanks! There are affiliate links in this post. I believe it’s so important for disabled people to review their peers’ books, which is why I’m doing so publicly.