Appearance activist Carly Findlay: ‘Visibility is possibility’

Carly Findlay OAM is an appearance writer, speaker, and activist. She is also the author of “Say Hello”, a memory that relates her experience of living with the rare ichthyosis of the skin condition. All opinions expressed in this article belong to the author.

Since I was a young child, the media has told me that my red and scaly skin is repulsive.

Beauty was limited to the flawless skin of models in magazines and on television, and the ads promoted anti-dandruff products and solutions to reduce redness. I still see ads today that sell creams to remove embarrassment from dry, flaky skin.

I was born with a rare, severe, and incurable skin condition called ichthyosis – it causes scaly red skin, itching, pain, and poses social challenges.

Growing up in Australia, Carly Findlay didn’t see anyone on television with the same skin condition until she was a teenager. Credit: Courtesy of Carly Findlay

I never saw a person with ichthyosis in the media until I was around 17 years old. That person was a patient undergoing surgery on a tabloid tabloid-style documentary TV show, and when the camera zoomed in on his scales, the host, who presumably has no ichthyosis – presents his skin as a tragic affliction. I don’t think the ichthyosis is a tragedy.

The stories that followed were no better. The ichthyosis was covered in a sensational and disrespectful way, with dehumanizing headlines like “snakeskin woman” and “plastic baby.” Videos and photos of children who had scales removed in the bathroom and parents who talked about how long they had waited for a “normal” child were shared.

After filing countless complaints to the media about how they reported ichthyosis, I decided that I didn’t want to read another article on ichthyosis unless I had written it myself.

So, I wrote to myself in the media. I started writing a blog, presenting articles and doing interviews on community television, which led to public speaking events, appearances on mainstream television and a book, a memoir called “Say Hello.” I made a constant effort to be visible in the mainstream media, on social media, and in everyday life, portraying ichthyosis as a condition, not a curse. I am passionate about showing a full life with ichthyosis, not a life to regret or ridicule.

In the past year, I started posting photos of my outfits on social media with the caption: “I put this on today and I felt fucking awesome.”

I do it because it is not what many people expect from me. They hope I can’t feel good about my appearance, and it’s definitely not fabulous, because people with disabilities, people with facial differences, and skin conditions must hate our appearance. The media and the beauty industry mock, ridicule, and erase us, and society in general treats us the same way.

I feel fabulous while wearing bright and fun clothes, and I will challenge those who tell me that I am ugly or that I don’t expect me to have confidence in the body.

I am careful to post only photos of my real face, unfiltered. I do not reduce redness, nor do I edit the flakes of skin on my scalp or clothing. I do it because I don’t want to hide who I am, and I do it so that I can be visible, because I believe that visibility creates possibilities.

I also add image descriptions to my social media posts, so blind and sensory impaired people can know what the photos are showing. It’s a free and easy way to make my social media posts accessible to people with disabilities, and anyone can do it.

Until about 10 years ago, photo retouching was only done to models and celebrities in magazines. Now, with the help of an app, or even some phone cameras, anyone can sculpt their face or remove a stain in an instant.

I am concerned that we have access to digital retouching at our fingertips, and that many people no longer show their true faces.

It takes a lot of courage for those of us with facial differences and skin conditions to show our real faces on social media, when people with beauty privileges are altering theirs. It says a lot about the homogenized and impossible standard of beauty that we are told to aspire to.

Recently, I saw a friend’s Instagram photo and did a double take. Her face had an enzyme peel mask, which made her skin look and peel off like mine at night. The skin around his mouth and chin was similar to mine when I got up, tight and cracked.

My morning face is something I would just let my parents see, and now my husband, of course. I was so embarrassed for years that I didn’t even want to look in the mirror.

I commented that this looks a bit like ichthyosis, and that you pay a lot of money for these shells, but my face is peeled daily. While my comment was in a good mood, implying that my always youthful looks cost zero (it’s true, it seems like I haven’t aged since high school, and I’m quite satisfied with this!), I thought of that photo for a long time.

I thought it was interesting that women fight for youthful and beautiful skin through chemical peels and other cosmetic treatments, and yet, when it happens naturally to people like me, we are ostracized.

Findlay has written a book about his experiences, titled “Say Hello.” Credit: Prod Haus to start with Julius

I admired my friend’s confidence to be so public with this photo and realized that I don’t have any photo of my morning face because I’m too scared to be trolled on Reddit (again). Although for a minute, I wondered if my friend would have made it safer to photograph and share this face in the morning. Maybe one day I will share that face of the morning with the world.

I am so grateful that social media provides disabled people with a platform to connect with each other and be seen. I urge everyone to follow diverse people, especially those with a different life experience than yours. Enough with the Instabland.

Considering that social media is a visual medium, often riddled with trolling, the response I get to my photos is overwhelmingly positive.

People compliment me on my colorful fashion sense, which is charming.

But what it means the most to me is the feedback I get from people with facial differences and skin conditions, who feel less alone or more confident in their own skin, because I posted a photo of myself.

Visibility is a possibility, and I am helping people feel comfortable and confident in their own skin.