Carly Findlay
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Carly Findlay (born 1981) is an Australian
writer A writer is a person who uses written words in different writing styles and techniques to communicate ideas. Writers produce different forms of literary art and creative writing such as novels, short stories, books, poetry, travelogues, p ...
, speaker, and online
influencer An Internet celebrity (also known as a social media influencer, social media personality, internet personality, or simply influencer) is a celebrity who has acquired or developed their fame and notability through the Internet. The rise of social m ...
. Findlay describes herself as an 'appearance activist', and has been outspoken on a number of disability-related issues. She has been particularly vocal on the right to privacy of children with a disability as well as the importance of representation and inclusion of disabled people both in general life, and particularly in
fashion Fashion is a form of self-expression and autonomy at a particular period and place and in a specific context, of clothing, footwear, lifestyle, accessories, makeup, hairstyle, and body posture. The term implies a look defined by the fashion in ...
. Findlay makes use of social media to document her love of fashion, food, as well as the treatment and ableism she faces because she has
ichthyosis Ichthyosis is a family of genetic skin disorders characterized by dry, thickened, scaly skin. The more than 20 types of ichthyosis range in severity of symptoms, outward appearance, underlying genetic cause and mode of inheritance (e.g., dominan ...
, a genetic disorder that affects her skin and hair. She has built a business and personal brand around being disabled


Biography


Early life

Findlay's parents courted illegally for four years in South Africa during the
Apartheid Apartheid (, especially South African English: , ; , "aparthood") was a system of institutionalised racial segregation that existed in South Africa and South West Africa (now Namibia) from 1948 to the early 1990s. Apartheid was ...
and moved to Australia in order to marry in 1981. Her mother Jeanette was classified as
coloured South African Coloureds ( af, Kleurlinge or , ) refers to members of multiracial ethnic communities in Southern Africa who may have ancestry from more than one of the various populations inhabiting the region, including African, European, and Asian. South ...
, while her father Roger was an Englishman. Findlay was born on 8 December 1981 in
Albury Albury () is a major regional city in New South Wales, Australia. It is located on the Hume Highway and the northern side of the Murray River. Albury is the seat of local government for the council area which also bears the city's name – the ...
,
New South Wales ) , nickname = , image_map = New South Wales in Australia.svg , map_caption = Location of New South Wales in AustraliaCoordinates: , subdivision_type = Country , subdivision_name = Australia , established_title = Before federation , es ...
, three weeks pre-mature and was diagnosed with a form of the genetic disease
ichthyosis Ichthyosis is a family of genetic skin disorders characterized by dry, thickened, scaly skin. The more than 20 types of ichthyosis range in severity of symptoms, outward appearance, underlying genetic cause and mode of inheritance (e.g., dominan ...
:
congenital ichthyosiform erythroderma Congenital ichthyosiform erythroderma (CIE), also known as nonbullous congenital ichthyosiform erythroderma, is a rare type of the ichthyosis family of skin diseases which occurs in 1 in 200,000 to 300,000 births. CIE comes under the umbrella term a ...
.


Education

The Findlay family moved from Albury to a small village
Walla Walla Walla Walla can refer to: * Walla Walla people, a Native American tribe after which the county and city of Walla Walla, Washington, are named * Place of many rocks in the Australian Aboriginal Wiradjuri language, the origin of the name of the town ...
before she started preschool. Findlay attended Walla Walla Primary School and when she was 10 years old was diagnosed with a different form of ichthyosis,
Netherton syndrome Netherton syndrome is a severe, autosomal recessive form of ichthyosis associated with mutations in the ''SPINK5'' gene. It is named after Earl W. Netherton (1910–1985), an American dermatologist who discovered it in 1958.Netherton, E. W. A u ...
through
genetic testing Genetic testing, also known as DNA testing, is used to identify changes in DNA sequence or chromosome structure. Genetic testing can also include measuring the results of genetic changes, such as RNA analysis as an output of gene expression, or ...
. Findlay attended Murray High School in Albury and, during her final year, started working at a local
Kmart Kmart Corporation ( , doing business as Kmart and stylized as kmart) is an American retail company that owns a chain of big box department stores. The company is headquartered in Hoffman Estates, Illinois, United States. The company was inc ...
department store. Findlay recalls feeling more comfortable with hospital staff than her fellow students. Findlay studied at
La Trobe University La Trobe University is a public research university based in Melbourne, Victoria, Australia. Its main campus is located in the suburb of Bundoora. The university was established in 1964, becoming the third university in the state of Victoria an ...
in
Wodonga Wodonga (Pallanganmiddang language, Waywurru: ''Wordonga'') is a city on the Victoria (Australia), Victorian side of the border with New South Wales, north-east of Melbourne, Australia. It is located wholly within the boundaries of the City of ...
and in 2002 graduated with a Bachelor of eCommerce. She moved to Melbourne in 2003 to work for the
Australian Public Service The Australian Public Service (APS) is the federal civil service of the Commonwealth of Australia responsible for the public administration, public policy, and public services of the departments and executive and statutory agencies of the G ...
and completed her Masters of Communication from
RMIT University RMIT University, officially the Royal Melbourne Institute of Technology,, section 4(b) is a public research university in Melbourne Melbourne ( ; Boonwurrung/Woiwurrung: ''Narrm'' or ''Naarm'') is the capital and most populous city ...
from 2005 to 2012.


Career

From February 2003 to November 2017, Findlay was employed by the Australian Tax Department and from September 2016 to May 2017, held the position of Communication Coordinator for People with Disability Australia Inc. In 2012 and 2013, Findlay had three encounters with taxi drivers which led her to make a complaint to the Victorian Taxi Commission and the
Australian Human Rights Commission The Australian Human Rights Commission is the national human rights institution of Australia, established in 1986 as the Human Rights and Equal Opportunity Commission (HREOC) and renamed in 2008. It is a statutory body funded by, but opera ...
. The drivers in questions refused to transport Findlay, making comments on her appearance, alleged intoxication, and smell, and claiming she would damage their vehicle. After the third incident, Findlay lodged a complaint with the taxi company as did the hotel concierge who booked the taxi for her. When no action was taken, she complained to the Victorian Taxi Commission and the Australian Human Rights Commission. 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 Julia Eileen Gillard (born 29 September 1961) is an Australian former politician who served as the 27th prime minister of Australia from 2010 to 2013, holding office as leader of the Australian Labor Party (ALP). She is the first and only ...
at Layne Beachley's Women in Leadership luncheon, Progress 2017, University of Western England, ProBlogger,
Melbourne Writers Festival Melbourne Writers Festival (MWF) is an annual literary festival held in the Australian city of Melbourne, a UNESCO City of Literature. The Festival runs during early September each year. Melbourne Writers Festival is part of the Word Alliance, ...
, Emerging Writers Festival, Dangerous Ideas around Disability and the
Royal Melbourne Hospital The Royal Melbourne Hospital (RMH), located in Parkville, Victoria, an inner suburb of Melbourne, is one of Australia's leading public hospitals. It is a major teaching hospital for tertiary health care with a reputation in clinical research. Th ...
. Findlay also regularly appears on podcasts and radio programs. Findlay has made a number of media appearances that placed her in the spotlight. 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. On 28 March 2018, Findlay had appeared on ABC Radio's morning show to discuss
microaggression Microaggression is a term used for commonplace daily verbal, behavioral or environmental slights, whether intentional or unintentional, that communicate hostile, derogatory, or negative attitudes toward stigmatized or culturally marginalized group ...
s and disability. During the interview, the host
Jon Faine Jonathan Eric Faine (born 21 September 1956) is an Australian former radio presenter who hosted the morning program on ABC Radio Melbourne in Melbourne. Faine is recognised as a prominent and influential member of the Australian Jewish communi ...
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. 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”. Faine later apologised. The incident was later cited by former ABC boss Michelle Guthrie as causative to her being sacked by the ABC Board. Guthrie appealed the decision to fire her and reached an out of court settlement with the AB

Findlay attributes most of her success to her appearance on ''You Can't Ask That''. 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 Melbourne Writers Festival (MWF) is an annual literary festival held in the Australian city of Melbourne, a UNESCO City of Literature. The Festival runs during early September each year. Melbourne Writers Festival is part of the Word Alliance, ...
, including a spoken word performance as part of the Quippings: Disability unleashed theatre group. Findlay is currently employed in the role of Access and Inclusion Coordinator for the Melbourne Fringe Festival one day a week as well as providing customised disability awareness, social media and blogging training to organisations. She co-hosts a podcast called Refreshments Provided with Jason Scott Watkins.


Access to Fashion

As a self-proclaimed fashion lover, Findlay was unhappy with the lack of representation people with disabilities have in the media and fashion landscape. 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 which was staged away from the main event. "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. '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. It featured a number of models and fashion designers with disabilities.


Writing

Findlay was a writer from a young age, and started he
self-titled blog
in 2009. Findlay's blog details significant events in her life, her experience of life with ichthyosis, and her commentary as an appearance activist. Findlay has written for a variety of online and traditional media, including the ABC, SBS, Sydney Morning Herald, The Guardian, The Age, Essential Baby, Kidspot, Ravishly, Frankie Magazine, and Mamamia. After a journalist dubbed Findlay an appearance activist, she claimed the title and has since written on a range of topics related to appearance diversity and disabilities in general. Her writing also appears in anthologies - Growing Up African in Australia (edited by Maxine Beneba Clarke), Women of a Certain Rage, and Me Too - Stories from the Australian Movement; as well as in Bec Sparrow's Ask Me Anything and Tara Moss' Speaking Out. She was also included in ''200 women who will change the way you will see the world''.


Representation

A common theme of Findlay's work is the importance of representation of people of diverse appearance in the media, fashion, and general life. She takes “back the bleistgaze through social media” and her blog, using them as a platform to promote her brand, her love of fashion, ableism and the treatment and pain she experiences in association with her condition. 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, a term coined by the late Stella Young. “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.”


Privacy

The right to privacy for both children and adults with disability is an important facet of Findlay's writing. 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. She explored this topic in one of her performances at the 2018 Melbourne Writers Festival.


Identity

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'. “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.” Findlay says that she did not identify as having a disability until her mid-twenties, but doing so has given her a platform on which to build her brand, a sense of confidence and a community. “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 selflessly improving the lives of others.”


Say Hello

After receiving five publication offers, on 3 July 2017, Findlay signed a book deal with Harper Collins. 'Say Hello' was launched in January 2019. 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.” 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. Findlay hopes the book helps those who also have ichthyosis, their parents, young women and teachers. “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.” Growing Up Disabled in Australia Findlay edited
Growing Up Disabled in Australia
' - part of Black Inc Books' 'Growing Up...' anthology series. It was released on 2 February 2021. 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.


Awards

Findlay was awarded the
Order of Australia The Order of Australia is an honour that recognises Australian citizens and other persons for outstanding achievement and service. It was established on 14 February 1975 by Elizabeth II, Queen of Australia, on the advice of the Australian Gove ...
Medal in the
2020 Australia Day Honours The 2020 Australia Day Honours are appointments to various orders and honours to recognise and reward good works by Australian citizens. The list was announced on 26 January 2020 by the Governor General of Australia, David Hurley. The Australia ...
for "service to people with a disability". Other awards: * 2010 Yooralla Media Awards - Best Online Commentary * 2011 Australian Public Service Australia Day Award * 2011 Finalist in Best Australian Blogs – Australian Writers Centre * 2012 Finalist in Best Australian Blogs – Australian Writers Centre * 2012 Layne Beachley Aim for the Stars grant * 2013 Yooralla Media Awards - Best Online Commentary * 2013 Kidspot Voices - Best Personal Blog * 2013 BUPA Health Activist Award for Positive Life Change * 2013 Writers Victoria Write-ability fellowship * Nominee for a 2013 Pride of Australia Medal * Nominee for a 2013 Global Genes Project Champion of Hope award * 2014 Australian Financial Review and Westpac Australia 100 Women of Influence Awards * 2014 Finalist in Best Australian Blogs – Australian Writers Centre * 2014 Participant in The Guardian's Diverse Writers Program * 2016 Second place winner in the disability category of th
Australian Centre for Women in Leadership
* 2019 shortlisted i
The Horne Prize
for her essay titled ''In Sickness and In Health'' - on the social cost of health and migration policies that are fuelling deportations. The Horne Prize is run by The Saturday Paper and Aesop Foundation * 2019 joint recipient of the Lesley Hall Scholarship run by Arts Access Victoria


References

{{DEFAULTSORT:Findlay, Carly 1981 births 21st-century Australian women writers 21st-century Australian writers Australian women activists Living people Recipients of the Medal of the Order of Australia Social media influencers Australian women bloggers Bloggers from Melbourne Writers from Melbourne People from Albury, New South Wales La Trobe University alumni Australian disability rights activists RMIT University alumni