Carly Findlay: Not Letting A Rare Skin Condition Stop Her

Carly Findlay: Her Childhood

Carly Findlay was born in Walla Walla, New South Wales, Australia, in 1982 with a rare genetic skin condition called ichthyosis.

Ichthyosis is a chronic condition that can affect various parts of the body, including the face, scalp, arms, legs, and torso. The severity of the condition can vary widely, from mild cases that cause only minor discomfort, to severe cases that can significantly impact a person’s quality of life.

For Findlay, ichthyosis has caused numerous health issues over the years, including skin infections, dehydration, and difficulty regulating body temperature. It has also caused her skin to appear in a reddish color – something that makes her stand out in any crowd.

Carly Findlay as a child with her family dog. Source: CNN

As a child, Findlay had to undergo regular hospitalizations and treatments for her condition, which caused her to miss out on many social activities.

Growing up in a small religious town with a visible difference she experienced frequent bullying, physical and verbal harassment as well as exclusion from social activities. She was often the target of bullies at school and in the community.

It also didn’t help that she couldn’t see anyone – in real life or in the media – that looked like her.

She grew up feeling alone and isolated.

Findlay has spoken publicly about the difficulties she faced as a child due to her condition.

She has recounted how strangers would stare at her and make insensitive comments, and how some schoolmates would refuse to touch her or sit next to her in class.

However, her parents, who were both teachers, encouraged her to focus on her education and creativity, which helped her to develop a love for writing and reading.

As an appearance activist, Findlay has been open and honest about her experiences with ichthyosis, and has used her platform to challenge negative stereotypes and promote greater understanding and acceptance of people with visible differences.

Carly Findlay: Her Journey As An Appearance Activist

Findlay shared that the impetus for her activism career came after increasing frustrating with the lack of visibility of people with her condition.

She decided that in order to feel less alone, that if she wanted to see more people like her – she has to start being the person pitching the stories.

So she became determined to educate others about disability and promote inclusivity.

“I made a consistent effort to be visible in mainstream media, on social media and in everyday life, representing ichthyosis as a condition, not a curse”, she said.

In 2009, Findlay began writing about her experiences on her blog, Tune Into Radio Carly.

She quickly gained a large following and was soon invited to speak at events and conferences about disability rights and representation.

Her first book, a memoir titled “Say Hello,” was published in 2021 and received widespread critical acclaim.

Read more stories of trailblazing Australian women

Findlay’s work has been recognized with numerous awards and honors, including the 2021 Victoria Award for Excellence in Women’s Leadership and the Medal of the Order of Australia (OAM) in 2020.

Carly Findlay is known not only for her activism and writing, but also for her work as a speaker, emcee, and facilitator.

She has given keynote addresses and talks at conferences and events around the world, including TEDx events and the United Nations Disability Conference.

In addition to her advocacy work, Findlay has also been an active participant in the arts community.

She has written and appeared in several short films and documentaries, and has written for a number of publications including The Guardian, ABC, and Mamamia.

Findlay is also a regular guest on Australian television and radio programs, where she provides insights into disability issues and shares her personal experiences.

Being so open and visible in the media caused Findlay’s to often be the victim of online bullying and is often the victim of “death wishes”.

She has shared that there hasn’t been one day in her life that she wasn’t the target of mocking or insults thrown towards her because of her look.

Findlay’s activism extends beyond disability issues as well.

She self-identifies as a “proud member” of the LGBTQ+ community and is an advocate for body positivity and self-acceptance. She has spoken out against online bullying and harassment, even speaking before the Australian government on the dangers of online harassment.

She has used her platform repeatedly to raise awareness about the importance of inclusive language and attitudes.

Further Resources:

More Articles That May Interest You: