Carly Findlay

Findlay's parents courted illegally for four years in South Africa during the Apartheid and moved to Australia in order to marry in 1981.[7][8][9] Her mother Jeanette was classified as coloured South African, while her father Roger was an Englishman.[7][8][9]

Findlay was born on 8 December 1981 in Albury, New South Wales, three weeks pre-mature and was diagnosed with a form of the genetic disease ichthyosis: congenital ichthyosiform erythroderma.[10][11][12] When she was three weeks old, Findlay was admitted to The Royal Children's Hospital, Melbourne, where she was placed in intensive care for three months.[10]

The Findlay family moved from Albury to a small village Walla Walla before she started preschool.[10] Findlay attended Walla Walla Primary School and when she was 10 years old was diagnosed with a different form of ichthyosis, Netherton syndrome through genetic testing.[10][13]

Findlay attended Murray High School in Albury and, during her final year, started working at a local Kmart department store.[10][14] Findlay spent much of her childhood in hospital, and recalls feeling more comfortable with hospital staff than her fellow students.[14][11]

Findlay studied at La Trobe University in Wodonga and in 2002 graduated with a Bachelor of eCommerce.[15][16] She moved to Melbourne in 2003 to work for the Australian Public Service and completed her Masters of Communication from RMIT University from 2005 to 2012.[2][15][16]

From February 2003 to November 2017, Findlay was employed by the Australian Public Service and from September 2016 to May 2017, held the position of Communication Coordinator for People with Disability Australia Inc.[16]

In 2012 and 2013, Findlay had three encounters with taxi drivers that lead her to make a complaint to the Victorian Taxi Commission and the Australian Human Rights Commission.[17][18][19] The drivers in questions refused to transport Findlay, making comments on her appearance, alleged intoxication, and smell, and claiming she would damage their vehicle.[18][17]

After the third incident, Findlay lodged a complaint with the taxi company as did the hotel concierge who booked the taxi for her.[17][18] When no action was taken, she complained to the Victorian Taxi Commission and the Australian Human Rights Commission.[19] Her complaint, and subsequent input, resulted in improvements to the disability training provided to taxi drivers in Victoria.[19]

On 9 May 2015, Findlay hosted the first Australian Ichthyosis meet up, in partnership with the Genetic Support Network of Australia, as part of Ichthyosis Awareness Month and of the 75 attendees, 23 had ichthyosis.[14]

“Some of the attendees had never met anyone else with the condition before. This event was life changing – my parents tell me it was the best day of their life,” Findlay said.[14]

Findlay has had a number of speaking gigs, both individually and as a part of event panels including Women of Letters, opening for Julia Gillard at Layne Beachley's Women in Leadership luncheon, Progress 2017, University of Western England, ProBlogger, Melbourne Writers Festival, Emerging Writers Festival, Dangerous Ideas around Disability and the Royal Melbourne Hospital. Findlay also regularly appears on podcasts and radio programs.[20][21][22]

Findlay has made a number of media appearances that placed her in the spotlight and helped establish her position as a disability and appearance spokesperson. In 2017 Findlay appeared on the ABC television series You Can't Ask That and Cyber Hate with Tara Moss, and in 2018 she appeared on Channel Ten's The Project in response to an interview with Jon Faine on ABC Radio.[23][24] On 28 March 2018, Findlay had appeared on ABC Radio's morning show to discuss microagressions and disability.[25] During the interview, the host Jon Faine described Findlay as looking like a “burns victim” and having a face that wouldn't “be good at Halloween”, before asking about her sex life.[25][26][27]

Faine's line of questioning has been described by commentators and the public as “offensive”, “disrespectful” and “inappropriate”, while they described Findlay's reaction as “composed” and “polite”.[25][26][27] Faine apologised but later mentioned the incident had contributed to his retirement.[25][28]

Findlay attributes much of her success to her appearance on You Can't Ask That in particular, and she took advantage of her appearance to show the audience how rude and uncomfortable it is when people ask intrusive questions about her facial difference.[24]

In 2018, Findlay started promoting her upcoming book at a number of writers festivals across Australia, including the Feminist Writers Festival, Bendigo Writers Festival and at five events during the Melbourne Writers Festival, including a spoken word performance as part of the Quippings: Disability Unleashed theatre group.[29][30]

Findlay is currently the Access and Inclusion Coordinator for the Melbourne Fringe Festival as well as providing customised disability awareness, social media and blogging training to organisations.[31][3] She also co-hosts a podcast called Refreshments Provided with Jason Scott Watkins.

As a self-proclaimed fashion lover, Findlay was dissatisfied with the lack of representation people with disabilities have in the media and fashion landscape.[32] Propelled by her own experience of exclusion and elitism in fashion, in July 2018 she announced the first-ever disability-inclusive event to be held as part of Melbourne Fashion Week.[33][34][35]

"We're not treated the same when we go into stores. For me, I am sometimes not even spoken to. They think I am not going to want their clothes or their service, or they might be embarrassed to be seen with me,” Findlay said.[35]

'Access to Fashion - Disability on the Runway: an Exploration of Disability Inclusion in the Fashion Industry' was held on 1 September 2018, and included a panel discussion as well as a runway show.[32][36] Findlay ensured the event was accessible to all and that it featured a diverse range of models and fashion designers with disabilities.[32][36]

“If you're not invited to the party, invite yourself. So I did. I pitched to Melbourne Fashion Week because it was my dream to be involved in this and to have a space for disabled people to walk the catwalk...I want the fashion industry to take note that we are here and to embed us in everything they do...We have so much to give to the industry if only people would let us in,” Findlay said.[36]

Although part of Melbourne Fashion Week, Findlay received no funding for the show and launched a gofundme page to pay for promotions and ensure the models, makeup artists, photographers, catering, and producers were paid for their time. Despite her initial concerns, Findlay was able to exceed her initial fundraising goal of $5000 goal within 12 days with $9655 raised in total.

Within a month of being announced, the event was sold out and had received over 90 applications from people with disabilities who wished to model in the show.[36] Due to the capacity crowd, the runway show and panel were both live streamed so those who could not attend or missed out on tickets could still participate.

A common theme of Findlay's work is the importance of representation of people of diverse appearance in the media, fashion, and general life.[24][39] She takes “back the [ableist] gaze through social media”[40][41] and her blog, using them as a platform to promote disability issues, her love of fashion, ableism and the treatment and pain she experiences in association with her disability.[22]

Part of Findlay's push for representation is the need for disabled people to control how their stories are told, stopping disability being a tragedy or a burden to be overcome, and a push against so-called inspiration porn.[19][40][41]

“In fairy tales, the characters who look different are often cast as the villain or monsters. It's only when they shed their unconventional skin that they are seen as 'good' or less frightening. There are very few stories where the character that looks different is the hero of the story ... I've been the hero of my story - telling it on my own terms, proud about my facial difference and disability, not wanting a cure for my rare, severe and sometimes confronting skin condition, and knowing that I am beautiful even though I don't have beauty privilege.”[20]

The right to privacy for both children and adults with disability is an important facet of Findlay's writing.[42] Findlay has said she is grateful to her parents for not sharing her story without her consent and has taken issue with individual parents and parenting groups who have “overshared” their children's stories.[42] She explored this topic in one of her performances at the 2018 Melbourne Writers Festival.[30]

“I'm constantly horrified at the level of oversharing and ableism that I see among some parents … The urge to raise awareness should never be greater than the urge to maintain dignity of a disabled adult or child.”[30]

For Findlay, disability is a more central aspect of her identity than her racial background and she embraces the term 'disabled person' rather than 'person with a disability'.[8][1]

“Often when I write about disability and use the term 'disabled', people (strangers) correct me. They do so as they see disability as a bad thing ... Many disabled people see disability as part of our identity - just like race, sexuality, religion, gender etc. and that's ok. And many disabled people don't, and that's ok too. We can choose how to identify. And 'disabled' and 'disability' are not bad words.”[5]

Findlay says that she did not identify as having a disability until her mid-twenties, but doing so has given her a sense of confidence and a community.[29][1]

“Giving myself the labels of 'disabled' and 'chronically ill' has been very empowering. I feel great sense of belonging – and that's as big a relief as a diagnosis is. It's given me pride. I am proud to belong to an amazing, talented, diverse, passionate community that's committed to improving the lives of others.”

After receiving five publication offers, on 3 July 2017, Findlay signed a book deal with Harper Collins. 'Say Hello' is expected to be launched in January 2019.[20]

Findlay wrote that “Say Hello will be the book I needed to read when I was younger. I didn't have any role models with my condition until I searched the internet in my teens. There were no memoirs on ichthyosis – only medical textbooks with people's faces blacked out.”[21]

The book is expected to be a memoir of Findlay's life experience as a woman with ichthyosis as well as her journey to identifying as a disabled person and the struggles and confusion she experienced before reaching that point.[20][21][29][37] Findlay hopes the book helps those who also have ichthyosis, their parents, young women and teachers.[37][29]

“There was no one in media or books who looked like me, or to tell me it's ok to not want to change my appearance, and I didn't know whether I'd find love – love with another or love for myself. It's time to write that book. To be the person Little Carly needed.”[21]

Growing Up Disabled in Australia

Findlay is editing Growing Up Disabled in Australia - part of Black Inc Books' Growing Up... anthology series. It will be released on 2 June 2020. Growing Up Disabled in Australia is the fifth book in the highly acclaimed, bestselling Growing Up series. It includes interviews with prominent Australians such as Senator Jordon Steele-John and Paralympian Isis Holt, poetry and graphic art, as well as more than 40 original pieces by writers with a disability or chronic illness.