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Beauty and representation in the age of Instagram

With beauty so rigidly configured, seemingly confined to a mythical few on Instagram, the importance of representation and genuine authenticity is more vital now than ever, writes Amy Blair.

I couldn’t tell you the first time I realised I was different. My arms and legs were frequently bare as a child, my closet characterised by a colourful array of shorts and T-shirts. Even so, the inkling was there, like a dormant volcano awaiting a violent eruption. Perhaps the unearthing of such a realisation began at 13-years-old. With my teenage years dawning, the woes of puberty were just beginning to sink their teeth in; the girls got bitchier, the boys got hairier and a vicious battle began to grow.

As I fell deeper down the puberty rabbit hole, it seemed as though I had developed a sixth sense of sorts. I felt the deep burn of eyes upon me as I entered a room, my presence met by curious glances and a fumbling array of uncomfortable questions that permeated my self-image.

It’s that hot sickly feeling down the back of your neck as a boy snickers “lizard” as you walk past him on the bus. It’s that gorgeous little black dress, you know the one; matched with the bitter disappointment as you think, “I better not.” It’s the choice to suffer pants that stick and chafe on a hot day, as opposed to the unrelenting stare of a stranger in the street.

I soon realised, in order to preserve my own self-perception, I had to conform to the gaze of those who I thought could never understand or accept me. I had to choose discomfort to rid others of theirs. 

The shorts were soon replaced by pants and leggings, the shirts morphed into turtlenecks and long sleeves, while the self confidence I once would’ve labeled ‘naive’, vanished into thin air.

Frankly, the dissatisfaction I once felt when faced with my reflection was not simply because my breasts were not perfectly round and perky, because my hips were not yet developed or because my face did not imitate that of a plastic doll. It was because my skin is carved and grooved, the result of a rare skin condition Lamellar Ichthyosis. A unique pattern decorates my body, requiring frequent care and moisturising. 

As if a cave residing hag had cursed me at birth, I resented my appearance, praying for the effortlessly smooth and silky skin that the bikini-donning models on my Insta-feed possessed.

It was not until I stumbled across 22-year-old model Jeyźa Kaelani Gary's Instagram profile, @lyricallydiverse, that I experienced a feeling of representation and an overwhelming sense of pride that I had never felt before for my condition.

It dawned on me. I had never experienced a single shred of representation until this moment. 

My Instagram feed was filled with curated squares that captured the unachievable societal consensus of beauty. Squares that became a model to measure myself. A mindless scroll of my feed was not so mindless after all.

In this era defined by the internet, the beautiful, the rich and the admired are followed, liked and subscribed to, promoting a seemingly white, able-bodied, heterosexual and thin blueprint of beauty.

Influencer culture is pervasive. Selfies are tweaked, edited and perfected to sustain an audience. Beauty is exclusively dulled to one flavour, a flavour so bland, I’d probably liken it to mayonnaise.

“I’ve always viewed myself as beautiful. Even when the world pushes an alternate opinion,” Jeyźa wrote to me on an otherwise bland Tuesday morning. I had eagerly awaited her responses. Having DM’d the American model on Instagram about a week prior, I was desperate to be graced by her wisdom, racking my brains for questions to ask her and preparing to soak in every last word. Admittedly, I was in awe of her beauty and confidence, and mesmerised by our likeness.

“I didn’t have anyone to look at growing up. I knew I had to become my own example even without a guide,” she wrote. “I’d tell my younger self, ‘you’re going to change the world, every negative experience you’ve had will be a crucial part of your success’.”

With digitals published in Vogue Italia, an appearance on the cover of the February 2020 Glamour UK digital magazine, a feature in Target’s 2020 swimwear collection, and not to mention, 29k+ followers on Instagram, the rising model is a trailblazer, breaking the barriers of a famously rigidly configured industry; promoting inclusivity and self-love.

“It was pretty breathtaking,” reflects Jeyźa on her Vogue Italia feature. “I have been featured quite a few times at this point and it never gets less shocking.”

Dedicated to becoming the example she did not have growing up, Jeyźa is aware of the power in her position as a positive influencer. She is a strong force, unforgiving in her presence as both an individual with a skin condition and a Black woman. 

“Oftentimes, expectation versus reality are on completely different spectrums,” she says. “The beauty standards created through influencer culture are harmful because of the lack of inclusivity that it promotes.”

Aware of the pervasive ideologies that often deem those who are not white, heterosexual, or able- bodied a seat at the table, Jeyźa is dedicated in her quest for equality.

I feel like my influence changes those ideologies because I’m willing to declare the need for representation in every realm. Not just visible differences. I stand for equality within the industry in every means of the way.”

What is Ichthyosis?

Ichthyosis is more than simply one condition, but a family, a diverse body of “genetic skin disorders” as published by the Foundation for Ichthyosis and Related Skin Types. Think sunburn, but constant. Characterised by dry, thickened or extremely thin scaling skin, Ichthyosis appears in a variety of forms. Many with Ichthyosis are unable to sweat, or may only sweat partially.

While there is no cure at the time of writing, a strong community persists with several Facebook groups, support groups and foundations; such as ‘FIRST,’ the Foundation for Ichthyosis and Related Skin Types.

All races, genders and ages can be affected, with an array of severities, forming an eclectic community of individuals who although, may have different struggles, share a similar story. Medical complications are often possible, such as “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss” as published by FIRST.

However, Ichthyosis is genetic, not contagious. It is most commonly passed on genetically, even when parents do not display symptoms themselves.

A study has revealed that approximately 300 babies are born with moderate to severe cases of Ichthyosis in the United States, each year. That’s about five to 10 infants for every 100,000 babies born.

“I would describe it as something that is ever changing and affects the bigger parts of your life,” wrote Jeyźa. "I take 2 to 3 baths daily, constantly moisturise, along with taking a medication that slows the chromosome’s production.”

Ichthyosis is often managed with medication and an array of moisturisers. 

My mornings begin like most others. I drag myself out of bed for a quick shower, but as opposed to throwing on some clothes and heading out the door, I have an hour of self-care ahead; moisturising my entire body, it’s kind of like my lubricant for life. If I’m going to move comfortably, avoid flakiness or aching, this part of my day is vital.

“I think it’s definitely really difficult with a young one growing up and just not having anyone to look up to, not having anyone who looks like or reflects them on television or online. It can be damaging to be isolated from those who share such a profound experience,” my mother Bree Taylor announces, as she sits on the plush carpet of her Mosgiel townhouse, basking in the living-room sun while flicking through a photo-album crammed to the brim with photographs of my childhood. 

“As a parent, all I can hope for is my children to feel secure in who they are, but when the media tells them they shouldn’t be, it’s clearly very painful and upsetting. It’s internalised and it can jeopardise their self-confidence.”

With years of dedicated research, so many doctor visits I cannot count and an uncompromising drive to achieve the best life possible for me, Bree maintains a steady wealth of knowledge on Ichthyosis.

“Beauty standards are not real nor are they realistic, they do not reflect an authentic reality and they certainly don’t reflect the reality of those who have something unique about them,” says Bree. “Inclusivity is not just important, it’s a true reflection of the diverse group of people that live within society.”

She recommends that educating children with Ichthyosis on the frequently harsh and often unachievable standards of beauty is important. “Remind your children that they are not cursed, they are not a mistake and that they are special. Uniqueness is what makes the world a special place. Children deserve love and support no matter their condition.”

So where did it begin? The female physique and beauty has always been subject to the male gaze. Photoshopping began in the days we were painted. Jean Auguste Dominique Ingres’ La Grande Odalisque makes for an interesting point of reference. Painted in 1814 and currently available for your viewing pleasure in the famous Louvre Paris, the painting features a lounging nude woman; the curves of her hips are emphasised with her back extended to an unnatural length, her limbs are elongated and her head is small and dainty. Her skin is white and her complexion is clear. 

Today, this altering persists, but we can do it ourselves. With filters that change the entire appearance of your face and with photo editing apps that smooth out the bumps, tuck the waist, widen the hips and plump the lips; beauty suddenly merges into the same form.

One’s physical perception is key to personal identity and begins early in life. While key aspects of measuring one’s ‘attractiveness’ with “innate preferences such as symmetry and small waist to hip ratio,” the socio-cultural environment we reside within is further, a largely determining factor, according to a report on the effects of social media use on desire for cosmetic surgery among young women.

How do I picture this complex beast? Well, it seems that beauty is constructed in a scarily similar way. Instagram is the vehicle through which presumably ‘regular’ women undergo a transformation. 

The product is a recreation of the idealised modern woman. Thin, but not too thin. Large and perky breasts, as well as a shapely set of hips and buttocks. Eyes are bright and white, noses are thin and straight, a painfully Eurocentric ideal. Lips are plumped and large, as if they might burst at any given second.

A study conducted in 2014, discovered that the use of social media is a likely cause of decreased life satisfaction, body dissatisfaction and eating disorder symptoms in young women. 

Furthermore, it’s been consistently found that the exposure to such idealised imagery is harmful. A 2017 study determined that appearance focused activities were highly related to body image concerns in young women.

Further studies on the effects of social media and the desire for cosmetic surgery, suggest that viewing imagery of women with surgically enhanced features affects the desire for young women to surgically enhance their own appearance. A prevalence for this desire is especially noticeable in individuals who invest a large amount of time on social media, avidly follow several accounts and are already unhappy with their appearance.

While we judge our appearances based upon the societally defined beauty standards, the media is a specific channel through which beauty ideals persist, recognised for its influence in the desire for cosmetic surgery. However, like Jeyźa, several individuals adapt the space for positive influencing; creating a sphere for visibility, inclusion and education.

In 2012, Carly Findlay shared a speech titled ‘I Couldn’t Handle Looking Like You’, explaining that “My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand”.

As an individual with both Erythroderma, as well as Netherton’s Syndrome, two forms of Ichthyosis, the Australian author, speaker and appearance activist remains a voice for those often rendered voiceless within society, working to break the social barriers that delegitimise those who are disabled. 

“I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial differences, chronic illnesses and disabilities,” said the 39-year-old.

“Our bodies aren’t disabling, it’s society who is disabling,” Carly told SBS News, reflecting on the Order of Australia Medal she received in 2020 for her extensive work for people with disabilities.

As a successful freelance writer, author of Say Hello, editor of ‘Growing Up Disabled in Australia,’ frequent blogger and positive Instagram personality, Carly is refreshingly honest, frank and forthright in her writings, and her desire to be visible and authentic; regularly snapping outfit selfies to be posted later to her 36k Instagram followers.

“They [selfies] show the world that we want to be seen, that we are not going to change our faces to conform, and that visibility is possibility. We are also making it safe for other people with facial differences and skin conditions to share their photos without fear.”

A largely positive force, Carly serves an unlikely dose of reality, one often confined behind the screens of severely tweaked and edited selfies.

“Since I was a young child, the media has told me that my flaky, red skin is repulsive,” she wrote. “We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole. I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I'm ugly or don't expect me to have body confidence.”

After vocalising a multitude of complaints to the media due to their frequently sensationalised portrayal of Ichthyosis, Carly decided to take representation into her own hands. “I didn't want to read another article about ichthyosis unless I had written it myself,” she wrote in a recent article.

Carly’s dedication to visibility, inclusivity and representation is supported by her consistent posts to her Instagram, as well as her frequent blog posts; her lending of support to Facebook groups dedicated to Australians and New Zealanders with Ichthyosis and her published articles; running the Australian Ichthyosis meet up; speaking on a panel at the All About Women festival on beauty and representation at the Sydney Opera House.

Carly’s successful career is testament to her highly respected presence within the disability community and her continued efforts to educate and better society, in its response to the many who do not resemble the bikini-clad models on their Insta-feed.

While society remains a space through which beauty is mediated at a global level, agreed upon by the masses of curated squares posted to Instagram and consequently, a troubling set of guidelines for young women, positive influencers such as Carly and Jeyźa provide a powerful voice in mobilising the media to provide representation for those with Ichthyosis and other disabilities alike.

Ichthyosis is a complex group of conditions, affecting many and presenting a plethora of challenges when faced with the rigid set of beauty ideals that are inescapable in the media driven society of today.

Nonetheless, it is important to note that we are not alone. The toxicities of online culture may never be avoided, but simply engaging with individuals who utilise their corner to spread messages of visibility and inclusivity is key.

Ichthyosis is not a curse. It is not preventative of success, confidence or beauty and although the journey of self-acceptance may contain several obstacles in its course, we all must take the opportunity to find our ‘lubricant for life.’

No items found.

With beauty so rigidly configured, seemingly confined to a mythical few on Instagram, the importance of representation and genuine authenticity is more vital now than ever, writes Amy Blair.

I couldn’t tell you the first time I realised I was different. My arms and legs were frequently bare as a child, my closet characterised by a colourful array of shorts and T-shirts. Even so, the inkling was there, like a dormant volcano awaiting a violent eruption. Perhaps the unearthing of such a realisation began at 13-years-old. With my teenage years dawning, the woes of puberty were just beginning to sink their teeth in; the girls got bitchier, the boys got hairier and a vicious battle began to grow.

As I fell deeper down the puberty rabbit hole, it seemed as though I had developed a sixth sense of sorts. I felt the deep burn of eyes upon me as I entered a room, my presence met by curious glances and a fumbling array of uncomfortable questions that permeated my self-image.

It’s that hot sickly feeling down the back of your neck as a boy snickers “lizard” as you walk past him on the bus. It’s that gorgeous little black dress, you know the one; matched with the bitter disappointment as you think, “I better not.” It’s the choice to suffer pants that stick and chafe on a hot day, as opposed to the unrelenting stare of a stranger in the street.

I soon realised, in order to preserve my own self-perception, I had to conform to the gaze of those who I thought could never understand or accept me. I had to choose discomfort to rid others of theirs. 

The shorts were soon replaced by pants and leggings, the shirts morphed into turtlenecks and long sleeves, while the self confidence I once would’ve labeled ‘naive’, vanished into thin air.

Frankly, the dissatisfaction I once felt when faced with my reflection was not simply because my breasts were not perfectly round and perky, because my hips were not yet developed or because my face did not imitate that of a plastic doll. It was because my skin is carved and grooved, the result of a rare skin condition Lamellar Ichthyosis. A unique pattern decorates my body, requiring frequent care and moisturising. 

As if a cave residing hag had cursed me at birth, I resented my appearance, praying for the effortlessly smooth and silky skin that the bikini-donning models on my Insta-feed possessed.

It was not until I stumbled across 22-year-old model Jeyźa Kaelani Gary's Instagram profile, @lyricallydiverse, that I experienced a feeling of representation and an overwhelming sense of pride that I had never felt before for my condition.

It dawned on me. I had never experienced a single shred of representation until this moment. 

My Instagram feed was filled with curated squares that captured the unachievable societal consensus of beauty. Squares that became a model to measure myself. A mindless scroll of my feed was not so mindless after all.

In this era defined by the internet, the beautiful, the rich and the admired are followed, liked and subscribed to, promoting a seemingly white, able-bodied, heterosexual and thin blueprint of beauty.

Influencer culture is pervasive. Selfies are tweaked, edited and perfected to sustain an audience. Beauty is exclusively dulled to one flavour, a flavour so bland, I’d probably liken it to mayonnaise.

“I’ve always viewed myself as beautiful. Even when the world pushes an alternate opinion,” Jeyźa wrote to me on an otherwise bland Tuesday morning. I had eagerly awaited her responses. Having DM’d the American model on Instagram about a week prior, I was desperate to be graced by her wisdom, racking my brains for questions to ask her and preparing to soak in every last word. Admittedly, I was in awe of her beauty and confidence, and mesmerised by our likeness.

“I didn’t have anyone to look at growing up. I knew I had to become my own example even without a guide,” she wrote. “I’d tell my younger self, ‘you’re going to change the world, every negative experience you’ve had will be a crucial part of your success’.”

With digitals published in Vogue Italia, an appearance on the cover of the February 2020 Glamour UK digital magazine, a feature in Target’s 2020 swimwear collection, and not to mention, 29k+ followers on Instagram, the rising model is a trailblazer, breaking the barriers of a famously rigidly configured industry; promoting inclusivity and self-love.

“It was pretty breathtaking,” reflects Jeyźa on her Vogue Italia feature. “I have been featured quite a few times at this point and it never gets less shocking.”

Dedicated to becoming the example she did not have growing up, Jeyźa is aware of the power in her position as a positive influencer. She is a strong force, unforgiving in her presence as both an individual with a skin condition and a Black woman. 

“Oftentimes, expectation versus reality are on completely different spectrums,” she says. “The beauty standards created through influencer culture are harmful because of the lack of inclusivity that it promotes.”

Aware of the pervasive ideologies that often deem those who are not white, heterosexual, or able- bodied a seat at the table, Jeyźa is dedicated in her quest for equality.

I feel like my influence changes those ideologies because I’m willing to declare the need for representation in every realm. Not just visible differences. I stand for equality within the industry in every means of the way.”

What is Ichthyosis?

Ichthyosis is more than simply one condition, but a family, a diverse body of “genetic skin disorders” as published by the Foundation for Ichthyosis and Related Skin Types. Think sunburn, but constant. Characterised by dry, thickened or extremely thin scaling skin, Ichthyosis appears in a variety of forms. Many with Ichthyosis are unable to sweat, or may only sweat partially.

While there is no cure at the time of writing, a strong community persists with several Facebook groups, support groups and foundations; such as ‘FIRST,’ the Foundation for Ichthyosis and Related Skin Types.

All races, genders and ages can be affected, with an array of severities, forming an eclectic community of individuals who although, may have different struggles, share a similar story. Medical complications are often possible, such as “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss” as published by FIRST.

However, Ichthyosis is genetic, not contagious. It is most commonly passed on genetically, even when parents do not display symptoms themselves.

A study has revealed that approximately 300 babies are born with moderate to severe cases of Ichthyosis in the United States, each year. That’s about five to 10 infants for every 100,000 babies born.

“I would describe it as something that is ever changing and affects the bigger parts of your life,” wrote Jeyźa. "I take 2 to 3 baths daily, constantly moisturise, along with taking a medication that slows the chromosome’s production.”

Ichthyosis is often managed with medication and an array of moisturisers. 

My mornings begin like most others. I drag myself out of bed for a quick shower, but as opposed to throwing on some clothes and heading out the door, I have an hour of self-care ahead; moisturising my entire body, it’s kind of like my lubricant for life. If I’m going to move comfortably, avoid flakiness or aching, this part of my day is vital.

“I think it’s definitely really difficult with a young one growing up and just not having anyone to look up to, not having anyone who looks like or reflects them on television or online. It can be damaging to be isolated from those who share such a profound experience,” my mother Bree Taylor announces, as she sits on the plush carpet of her Mosgiel townhouse, basking in the living-room sun while flicking through a photo-album crammed to the brim with photographs of my childhood. 

“As a parent, all I can hope for is my children to feel secure in who they are, but when the media tells them they shouldn’t be, it’s clearly very painful and upsetting. It’s internalised and it can jeopardise their self-confidence.”

With years of dedicated research, so many doctor visits I cannot count and an uncompromising drive to achieve the best life possible for me, Bree maintains a steady wealth of knowledge on Ichthyosis.

“Beauty standards are not real nor are they realistic, they do not reflect an authentic reality and they certainly don’t reflect the reality of those who have something unique about them,” says Bree. “Inclusivity is not just important, it’s a true reflection of the diverse group of people that live within society.”

She recommends that educating children with Ichthyosis on the frequently harsh and often unachievable standards of beauty is important. “Remind your children that they are not cursed, they are not a mistake and that they are special. Uniqueness is what makes the world a special place. Children deserve love and support no matter their condition.”

So where did it begin? The female physique and beauty has always been subject to the male gaze. Photoshopping began in the days we were painted. Jean Auguste Dominique Ingres’ La Grande Odalisque makes for an interesting point of reference. Painted in 1814 and currently available for your viewing pleasure in the famous Louvre Paris, the painting features a lounging nude woman; the curves of her hips are emphasised with her back extended to an unnatural length, her limbs are elongated and her head is small and dainty. Her skin is white and her complexion is clear. 

Today, this altering persists, but we can do it ourselves. With filters that change the entire appearance of your face and with photo editing apps that smooth out the bumps, tuck the waist, widen the hips and plump the lips; beauty suddenly merges into the same form.

One’s physical perception is key to personal identity and begins early in life. While key aspects of measuring one’s ‘attractiveness’ with “innate preferences such as symmetry and small waist to hip ratio,” the socio-cultural environment we reside within is further, a largely determining factor, according to a report on the effects of social media use on desire for cosmetic surgery among young women.

How do I picture this complex beast? Well, it seems that beauty is constructed in a scarily similar way. Instagram is the vehicle through which presumably ‘regular’ women undergo a transformation. 

The product is a recreation of the idealised modern woman. Thin, but not too thin. Large and perky breasts, as well as a shapely set of hips and buttocks. Eyes are bright and white, noses are thin and straight, a painfully Eurocentric ideal. Lips are plumped and large, as if they might burst at any given second.

A study conducted in 2014, discovered that the use of social media is a likely cause of decreased life satisfaction, body dissatisfaction and eating disorder symptoms in young women. 

Furthermore, it’s been consistently found that the exposure to such idealised imagery is harmful. A 2017 study determined that appearance focused activities were highly related to body image concerns in young women.

Further studies on the effects of social media and the desire for cosmetic surgery, suggest that viewing imagery of women with surgically enhanced features affects the desire for young women to surgically enhance their own appearance. A prevalence for this desire is especially noticeable in individuals who invest a large amount of time on social media, avidly follow several accounts and are already unhappy with their appearance.

While we judge our appearances based upon the societally defined beauty standards, the media is a specific channel through which beauty ideals persist, recognised for its influence in the desire for cosmetic surgery. However, like Jeyźa, several individuals adapt the space for positive influencing; creating a sphere for visibility, inclusion and education.

In 2012, Carly Findlay shared a speech titled ‘I Couldn’t Handle Looking Like You’, explaining that “My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand”.

As an individual with both Erythroderma, as well as Netherton’s Syndrome, two forms of Ichthyosis, the Australian author, speaker and appearance activist remains a voice for those often rendered voiceless within society, working to break the social barriers that delegitimise those who are disabled. 

“I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial differences, chronic illnesses and disabilities,” said the 39-year-old.

“Our bodies aren’t disabling, it’s society who is disabling,” Carly told SBS News, reflecting on the Order of Australia Medal she received in 2020 for her extensive work for people with disabilities.

As a successful freelance writer, author of Say Hello, editor of ‘Growing Up Disabled in Australia,’ frequent blogger and positive Instagram personality, Carly is refreshingly honest, frank and forthright in her writings, and her desire to be visible and authentic; regularly snapping outfit selfies to be posted later to her 36k Instagram followers.

“They [selfies] show the world that we want to be seen, that we are not going to change our faces to conform, and that visibility is possibility. We are also making it safe for other people with facial differences and skin conditions to share their photos without fear.”

A largely positive force, Carly serves an unlikely dose of reality, one often confined behind the screens of severely tweaked and edited selfies.

“Since I was a young child, the media has told me that my flaky, red skin is repulsive,” she wrote. “We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole. I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I'm ugly or don't expect me to have body confidence.”

After vocalising a multitude of complaints to the media due to their frequently sensationalised portrayal of Ichthyosis, Carly decided to take representation into her own hands. “I didn't want to read another article about ichthyosis unless I had written it myself,” she wrote in a recent article.

Carly’s dedication to visibility, inclusivity and representation is supported by her consistent posts to her Instagram, as well as her frequent blog posts; her lending of support to Facebook groups dedicated to Australians and New Zealanders with Ichthyosis and her published articles; running the Australian Ichthyosis meet up; speaking on a panel at the All About Women festival on beauty and representation at the Sydney Opera House.

Carly’s successful career is testament to her highly respected presence within the disability community and her continued efforts to educate and better society, in its response to the many who do not resemble the bikini-clad models on their Insta-feed.

While society remains a space through which beauty is mediated at a global level, agreed upon by the masses of curated squares posted to Instagram and consequently, a troubling set of guidelines for young women, positive influencers such as Carly and Jeyźa provide a powerful voice in mobilising the media to provide representation for those with Ichthyosis and other disabilities alike.

Ichthyosis is a complex group of conditions, affecting many and presenting a plethora of challenges when faced with the rigid set of beauty ideals that are inescapable in the media driven society of today.

Nonetheless, it is important to note that we are not alone. The toxicities of online culture may never be avoided, but simply engaging with individuals who utilise their corner to spread messages of visibility and inclusivity is key.

Ichthyosis is not a curse. It is not preventative of success, confidence or beauty and although the journey of self-acceptance may contain several obstacles in its course, we all must take the opportunity to find our ‘lubricant for life.’

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No items found.

Beauty and representation in the age of Instagram

With beauty so rigidly configured, seemingly confined to a mythical few on Instagram, the importance of representation and genuine authenticity is more vital now than ever, writes Amy Blair.

I couldn’t tell you the first time I realised I was different. My arms and legs were frequently bare as a child, my closet characterised by a colourful array of shorts and T-shirts. Even so, the inkling was there, like a dormant volcano awaiting a violent eruption. Perhaps the unearthing of such a realisation began at 13-years-old. With my teenage years dawning, the woes of puberty were just beginning to sink their teeth in; the girls got bitchier, the boys got hairier and a vicious battle began to grow.

As I fell deeper down the puberty rabbit hole, it seemed as though I had developed a sixth sense of sorts. I felt the deep burn of eyes upon me as I entered a room, my presence met by curious glances and a fumbling array of uncomfortable questions that permeated my self-image.

It’s that hot sickly feeling down the back of your neck as a boy snickers “lizard” as you walk past him on the bus. It’s that gorgeous little black dress, you know the one; matched with the bitter disappointment as you think, “I better not.” It’s the choice to suffer pants that stick and chafe on a hot day, as opposed to the unrelenting stare of a stranger in the street.

I soon realised, in order to preserve my own self-perception, I had to conform to the gaze of those who I thought could never understand or accept me. I had to choose discomfort to rid others of theirs. 

The shorts were soon replaced by pants and leggings, the shirts morphed into turtlenecks and long sleeves, while the self confidence I once would’ve labeled ‘naive’, vanished into thin air.

Frankly, the dissatisfaction I once felt when faced with my reflection was not simply because my breasts were not perfectly round and perky, because my hips were not yet developed or because my face did not imitate that of a plastic doll. It was because my skin is carved and grooved, the result of a rare skin condition Lamellar Ichthyosis. A unique pattern decorates my body, requiring frequent care and moisturising. 

As if a cave residing hag had cursed me at birth, I resented my appearance, praying for the effortlessly smooth and silky skin that the bikini-donning models on my Insta-feed possessed.

It was not until I stumbled across 22-year-old model Jeyźa Kaelani Gary's Instagram profile, @lyricallydiverse, that I experienced a feeling of representation and an overwhelming sense of pride that I had never felt before for my condition.

It dawned on me. I had never experienced a single shred of representation until this moment. 

My Instagram feed was filled with curated squares that captured the unachievable societal consensus of beauty. Squares that became a model to measure myself. A mindless scroll of my feed was not so mindless after all.

In this era defined by the internet, the beautiful, the rich and the admired are followed, liked and subscribed to, promoting a seemingly white, able-bodied, heterosexual and thin blueprint of beauty.

Influencer culture is pervasive. Selfies are tweaked, edited and perfected to sustain an audience. Beauty is exclusively dulled to one flavour, a flavour so bland, I’d probably liken it to mayonnaise.

“I’ve always viewed myself as beautiful. Even when the world pushes an alternate opinion,” Jeyźa wrote to me on an otherwise bland Tuesday morning. I had eagerly awaited her responses. Having DM’d the American model on Instagram about a week prior, I was desperate to be graced by her wisdom, racking my brains for questions to ask her and preparing to soak in every last word. Admittedly, I was in awe of her beauty and confidence, and mesmerised by our likeness.

“I didn’t have anyone to look at growing up. I knew I had to become my own example even without a guide,” she wrote. “I’d tell my younger self, ‘you’re going to change the world, every negative experience you’ve had will be a crucial part of your success’.”

With digitals published in Vogue Italia, an appearance on the cover of the February 2020 Glamour UK digital magazine, a feature in Target’s 2020 swimwear collection, and not to mention, 29k+ followers on Instagram, the rising model is a trailblazer, breaking the barriers of a famously rigidly configured industry; promoting inclusivity and self-love.

“It was pretty breathtaking,” reflects Jeyźa on her Vogue Italia feature. “I have been featured quite a few times at this point and it never gets less shocking.”

Dedicated to becoming the example she did not have growing up, Jeyźa is aware of the power in her position as a positive influencer. She is a strong force, unforgiving in her presence as both an individual with a skin condition and a Black woman. 

“Oftentimes, expectation versus reality are on completely different spectrums,” she says. “The beauty standards created through influencer culture are harmful because of the lack of inclusivity that it promotes.”

Aware of the pervasive ideologies that often deem those who are not white, heterosexual, or able- bodied a seat at the table, Jeyźa is dedicated in her quest for equality.

I feel like my influence changes those ideologies because I’m willing to declare the need for representation in every realm. Not just visible differences. I stand for equality within the industry in every means of the way.”

What is Ichthyosis?

Ichthyosis is more than simply one condition, but a family, a diverse body of “genetic skin disorders” as published by the Foundation for Ichthyosis and Related Skin Types. Think sunburn, but constant. Characterised by dry, thickened or extremely thin scaling skin, Ichthyosis appears in a variety of forms. Many with Ichthyosis are unable to sweat, or may only sweat partially.

While there is no cure at the time of writing, a strong community persists with several Facebook groups, support groups and foundations; such as ‘FIRST,’ the Foundation for Ichthyosis and Related Skin Types.

All races, genders and ages can be affected, with an array of severities, forming an eclectic community of individuals who although, may have different struggles, share a similar story. Medical complications are often possible, such as “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss” as published by FIRST.

However, Ichthyosis is genetic, not contagious. It is most commonly passed on genetically, even when parents do not display symptoms themselves.

A study has revealed that approximately 300 babies are born with moderate to severe cases of Ichthyosis in the United States, each year. That’s about five to 10 infants for every 100,000 babies born.

“I would describe it as something that is ever changing and affects the bigger parts of your life,” wrote Jeyźa. "I take 2 to 3 baths daily, constantly moisturise, along with taking a medication that slows the chromosome’s production.”

Ichthyosis is often managed with medication and an array of moisturisers. 

My mornings begin like most others. I drag myself out of bed for a quick shower, but as opposed to throwing on some clothes and heading out the door, I have an hour of self-care ahead; moisturising my entire body, it’s kind of like my lubricant for life. If I’m going to move comfortably, avoid flakiness or aching, this part of my day is vital.

“I think it’s definitely really difficult with a young one growing up and just not having anyone to look up to, not having anyone who looks like or reflects them on television or online. It can be damaging to be isolated from those who share such a profound experience,” my mother Bree Taylor announces, as she sits on the plush carpet of her Mosgiel townhouse, basking in the living-room sun while flicking through a photo-album crammed to the brim with photographs of my childhood. 

“As a parent, all I can hope for is my children to feel secure in who they are, but when the media tells them they shouldn’t be, it’s clearly very painful and upsetting. It’s internalised and it can jeopardise their self-confidence.”

With years of dedicated research, so many doctor visits I cannot count and an uncompromising drive to achieve the best life possible for me, Bree maintains a steady wealth of knowledge on Ichthyosis.

“Beauty standards are not real nor are they realistic, they do not reflect an authentic reality and they certainly don’t reflect the reality of those who have something unique about them,” says Bree. “Inclusivity is not just important, it’s a true reflection of the diverse group of people that live within society.”

She recommends that educating children with Ichthyosis on the frequently harsh and often unachievable standards of beauty is important. “Remind your children that they are not cursed, they are not a mistake and that they are special. Uniqueness is what makes the world a special place. Children deserve love and support no matter their condition.”

So where did it begin? The female physique and beauty has always been subject to the male gaze. Photoshopping began in the days we were painted. Jean Auguste Dominique Ingres’ La Grande Odalisque makes for an interesting point of reference. Painted in 1814 and currently available for your viewing pleasure in the famous Louvre Paris, the painting features a lounging nude woman; the curves of her hips are emphasised with her back extended to an unnatural length, her limbs are elongated and her head is small and dainty. Her skin is white and her complexion is clear. 

Today, this altering persists, but we can do it ourselves. With filters that change the entire appearance of your face and with photo editing apps that smooth out the bumps, tuck the waist, widen the hips and plump the lips; beauty suddenly merges into the same form.

One’s physical perception is key to personal identity and begins early in life. While key aspects of measuring one’s ‘attractiveness’ with “innate preferences such as symmetry and small waist to hip ratio,” the socio-cultural environment we reside within is further, a largely determining factor, according to a report on the effects of social media use on desire for cosmetic surgery among young women.

How do I picture this complex beast? Well, it seems that beauty is constructed in a scarily similar way. Instagram is the vehicle through which presumably ‘regular’ women undergo a transformation. 

The product is a recreation of the idealised modern woman. Thin, but not too thin. Large and perky breasts, as well as a shapely set of hips and buttocks. Eyes are bright and white, noses are thin and straight, a painfully Eurocentric ideal. Lips are plumped and large, as if they might burst at any given second.

A study conducted in 2014, discovered that the use of social media is a likely cause of decreased life satisfaction, body dissatisfaction and eating disorder symptoms in young women. 

Furthermore, it’s been consistently found that the exposure to such idealised imagery is harmful. A 2017 study determined that appearance focused activities were highly related to body image concerns in young women.

Further studies on the effects of social media and the desire for cosmetic surgery, suggest that viewing imagery of women with surgically enhanced features affects the desire for young women to surgically enhance their own appearance. A prevalence for this desire is especially noticeable in individuals who invest a large amount of time on social media, avidly follow several accounts and are already unhappy with their appearance.

While we judge our appearances based upon the societally defined beauty standards, the media is a specific channel through which beauty ideals persist, recognised for its influence in the desire for cosmetic surgery. However, like Jeyźa, several individuals adapt the space for positive influencing; creating a sphere for visibility, inclusion and education.

In 2012, Carly Findlay shared a speech titled ‘I Couldn’t Handle Looking Like You’, explaining that “My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand”.

As an individual with both Erythroderma, as well as Netherton’s Syndrome, two forms of Ichthyosis, the Australian author, speaker and appearance activist remains a voice for those often rendered voiceless within society, working to break the social barriers that delegitimise those who are disabled. 

“I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial differences, chronic illnesses and disabilities,” said the 39-year-old.

“Our bodies aren’t disabling, it’s society who is disabling,” Carly told SBS News, reflecting on the Order of Australia Medal she received in 2020 for her extensive work for people with disabilities.

As a successful freelance writer, author of Say Hello, editor of ‘Growing Up Disabled in Australia,’ frequent blogger and positive Instagram personality, Carly is refreshingly honest, frank and forthright in her writings, and her desire to be visible and authentic; regularly snapping outfit selfies to be posted later to her 36k Instagram followers.

“They [selfies] show the world that we want to be seen, that we are not going to change our faces to conform, and that visibility is possibility. We are also making it safe for other people with facial differences and skin conditions to share their photos without fear.”

A largely positive force, Carly serves an unlikely dose of reality, one often confined behind the screens of severely tweaked and edited selfies.

“Since I was a young child, the media has told me that my flaky, red skin is repulsive,” she wrote. “We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole. I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I'm ugly or don't expect me to have body confidence.”

After vocalising a multitude of complaints to the media due to their frequently sensationalised portrayal of Ichthyosis, Carly decided to take representation into her own hands. “I didn't want to read another article about ichthyosis unless I had written it myself,” she wrote in a recent article.

Carly’s dedication to visibility, inclusivity and representation is supported by her consistent posts to her Instagram, as well as her frequent blog posts; her lending of support to Facebook groups dedicated to Australians and New Zealanders with Ichthyosis and her published articles; running the Australian Ichthyosis meet up; speaking on a panel at the All About Women festival on beauty and representation at the Sydney Opera House.

Carly’s successful career is testament to her highly respected presence within the disability community and her continued efforts to educate and better society, in its response to the many who do not resemble the bikini-clad models on their Insta-feed.

While society remains a space through which beauty is mediated at a global level, agreed upon by the masses of curated squares posted to Instagram and consequently, a troubling set of guidelines for young women, positive influencers such as Carly and Jeyźa provide a powerful voice in mobilising the media to provide representation for those with Ichthyosis and other disabilities alike.

Ichthyosis is a complex group of conditions, affecting many and presenting a plethora of challenges when faced with the rigid set of beauty ideals that are inescapable in the media driven society of today.

Nonetheless, it is important to note that we are not alone. The toxicities of online culture may never be avoided, but simply engaging with individuals who utilise their corner to spread messages of visibility and inclusivity is key.

Ichthyosis is not a curse. It is not preventative of success, confidence or beauty and although the journey of self-acceptance may contain several obstacles in its course, we all must take the opportunity to find our ‘lubricant for life.’

Creativity, evocative visual storytelling and good journalism come at a price. Support our work and join the Ensemble membership program
No items found.

Beauty and representation in the age of Instagram

With beauty so rigidly configured, seemingly confined to a mythical few on Instagram, the importance of representation and genuine authenticity is more vital now than ever, writes Amy Blair.

I couldn’t tell you the first time I realised I was different. My arms and legs were frequently bare as a child, my closet characterised by a colourful array of shorts and T-shirts. Even so, the inkling was there, like a dormant volcano awaiting a violent eruption. Perhaps the unearthing of such a realisation began at 13-years-old. With my teenage years dawning, the woes of puberty were just beginning to sink their teeth in; the girls got bitchier, the boys got hairier and a vicious battle began to grow.

As I fell deeper down the puberty rabbit hole, it seemed as though I had developed a sixth sense of sorts. I felt the deep burn of eyes upon me as I entered a room, my presence met by curious glances and a fumbling array of uncomfortable questions that permeated my self-image.

It’s that hot sickly feeling down the back of your neck as a boy snickers “lizard” as you walk past him on the bus. It’s that gorgeous little black dress, you know the one; matched with the bitter disappointment as you think, “I better not.” It’s the choice to suffer pants that stick and chafe on a hot day, as opposed to the unrelenting stare of a stranger in the street.

I soon realised, in order to preserve my own self-perception, I had to conform to the gaze of those who I thought could never understand or accept me. I had to choose discomfort to rid others of theirs. 

The shorts were soon replaced by pants and leggings, the shirts morphed into turtlenecks and long sleeves, while the self confidence I once would’ve labeled ‘naive’, vanished into thin air.

Frankly, the dissatisfaction I once felt when faced with my reflection was not simply because my breasts were not perfectly round and perky, because my hips were not yet developed or because my face did not imitate that of a plastic doll. It was because my skin is carved and grooved, the result of a rare skin condition Lamellar Ichthyosis. A unique pattern decorates my body, requiring frequent care and moisturising. 

As if a cave residing hag had cursed me at birth, I resented my appearance, praying for the effortlessly smooth and silky skin that the bikini-donning models on my Insta-feed possessed.

It was not until I stumbled across 22-year-old model Jeyźa Kaelani Gary's Instagram profile, @lyricallydiverse, that I experienced a feeling of representation and an overwhelming sense of pride that I had never felt before for my condition.

It dawned on me. I had never experienced a single shred of representation until this moment. 

My Instagram feed was filled with curated squares that captured the unachievable societal consensus of beauty. Squares that became a model to measure myself. A mindless scroll of my feed was not so mindless after all.

In this era defined by the internet, the beautiful, the rich and the admired are followed, liked and subscribed to, promoting a seemingly white, able-bodied, heterosexual and thin blueprint of beauty.

Influencer culture is pervasive. Selfies are tweaked, edited and perfected to sustain an audience. Beauty is exclusively dulled to one flavour, a flavour so bland, I’d probably liken it to mayonnaise.

“I’ve always viewed myself as beautiful. Even when the world pushes an alternate opinion,” Jeyźa wrote to me on an otherwise bland Tuesday morning. I had eagerly awaited her responses. Having DM’d the American model on Instagram about a week prior, I was desperate to be graced by her wisdom, racking my brains for questions to ask her and preparing to soak in every last word. Admittedly, I was in awe of her beauty and confidence, and mesmerised by our likeness.

“I didn’t have anyone to look at growing up. I knew I had to become my own example even without a guide,” she wrote. “I’d tell my younger self, ‘you’re going to change the world, every negative experience you’ve had will be a crucial part of your success’.”

With digitals published in Vogue Italia, an appearance on the cover of the February 2020 Glamour UK digital magazine, a feature in Target’s 2020 swimwear collection, and not to mention, 29k+ followers on Instagram, the rising model is a trailblazer, breaking the barriers of a famously rigidly configured industry; promoting inclusivity and self-love.

“It was pretty breathtaking,” reflects Jeyźa on her Vogue Italia feature. “I have been featured quite a few times at this point and it never gets less shocking.”

Dedicated to becoming the example she did not have growing up, Jeyźa is aware of the power in her position as a positive influencer. She is a strong force, unforgiving in her presence as both an individual with a skin condition and a Black woman. 

“Oftentimes, expectation versus reality are on completely different spectrums,” she says. “The beauty standards created through influencer culture are harmful because of the lack of inclusivity that it promotes.”

Aware of the pervasive ideologies that often deem those who are not white, heterosexual, or able- bodied a seat at the table, Jeyźa is dedicated in her quest for equality.

I feel like my influence changes those ideologies because I’m willing to declare the need for representation in every realm. Not just visible differences. I stand for equality within the industry in every means of the way.”

What is Ichthyosis?

Ichthyosis is more than simply one condition, but a family, a diverse body of “genetic skin disorders” as published by the Foundation for Ichthyosis and Related Skin Types. Think sunburn, but constant. Characterised by dry, thickened or extremely thin scaling skin, Ichthyosis appears in a variety of forms. Many with Ichthyosis are unable to sweat, or may only sweat partially.

While there is no cure at the time of writing, a strong community persists with several Facebook groups, support groups and foundations; such as ‘FIRST,’ the Foundation for Ichthyosis and Related Skin Types.

All races, genders and ages can be affected, with an array of severities, forming an eclectic community of individuals who although, may have different struggles, share a similar story. Medical complications are often possible, such as “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss” as published by FIRST.

However, Ichthyosis is genetic, not contagious. It is most commonly passed on genetically, even when parents do not display symptoms themselves.

A study has revealed that approximately 300 babies are born with moderate to severe cases of Ichthyosis in the United States, each year. That’s about five to 10 infants for every 100,000 babies born.

“I would describe it as something that is ever changing and affects the bigger parts of your life,” wrote Jeyźa. "I take 2 to 3 baths daily, constantly moisturise, along with taking a medication that slows the chromosome’s production.”

Ichthyosis is often managed with medication and an array of moisturisers. 

My mornings begin like most others. I drag myself out of bed for a quick shower, but as opposed to throwing on some clothes and heading out the door, I have an hour of self-care ahead; moisturising my entire body, it’s kind of like my lubricant for life. If I’m going to move comfortably, avoid flakiness or aching, this part of my day is vital.

“I think it’s definitely really difficult with a young one growing up and just not having anyone to look up to, not having anyone who looks like or reflects them on television or online. It can be damaging to be isolated from those who share such a profound experience,” my mother Bree Taylor announces, as she sits on the plush carpet of her Mosgiel townhouse, basking in the living-room sun while flicking through a photo-album crammed to the brim with photographs of my childhood. 

“As a parent, all I can hope for is my children to feel secure in who they are, but when the media tells them they shouldn’t be, it’s clearly very painful and upsetting. It’s internalised and it can jeopardise their self-confidence.”

With years of dedicated research, so many doctor visits I cannot count and an uncompromising drive to achieve the best life possible for me, Bree maintains a steady wealth of knowledge on Ichthyosis.

“Beauty standards are not real nor are they realistic, they do not reflect an authentic reality and they certainly don’t reflect the reality of those who have something unique about them,” says Bree. “Inclusivity is not just important, it’s a true reflection of the diverse group of people that live within society.”

She recommends that educating children with Ichthyosis on the frequently harsh and often unachievable standards of beauty is important. “Remind your children that they are not cursed, they are not a mistake and that they are special. Uniqueness is what makes the world a special place. Children deserve love and support no matter their condition.”

So where did it begin? The female physique and beauty has always been subject to the male gaze. Photoshopping began in the days we were painted. Jean Auguste Dominique Ingres’ La Grande Odalisque makes for an interesting point of reference. Painted in 1814 and currently available for your viewing pleasure in the famous Louvre Paris, the painting features a lounging nude woman; the curves of her hips are emphasised with her back extended to an unnatural length, her limbs are elongated and her head is small and dainty. Her skin is white and her complexion is clear. 

Today, this altering persists, but we can do it ourselves. With filters that change the entire appearance of your face and with photo editing apps that smooth out the bumps, tuck the waist, widen the hips and plump the lips; beauty suddenly merges into the same form.

One’s physical perception is key to personal identity and begins early in life. While key aspects of measuring one’s ‘attractiveness’ with “innate preferences such as symmetry and small waist to hip ratio,” the socio-cultural environment we reside within is further, a largely determining factor, according to a report on the effects of social media use on desire for cosmetic surgery among young women.

How do I picture this complex beast? Well, it seems that beauty is constructed in a scarily similar way. Instagram is the vehicle through which presumably ‘regular’ women undergo a transformation. 

The product is a recreation of the idealised modern woman. Thin, but not too thin. Large and perky breasts, as well as a shapely set of hips and buttocks. Eyes are bright and white, noses are thin and straight, a painfully Eurocentric ideal. Lips are plumped and large, as if they might burst at any given second.

A study conducted in 2014, discovered that the use of social media is a likely cause of decreased life satisfaction, body dissatisfaction and eating disorder symptoms in young women. 

Furthermore, it’s been consistently found that the exposure to such idealised imagery is harmful. A 2017 study determined that appearance focused activities were highly related to body image concerns in young women.

Further studies on the effects of social media and the desire for cosmetic surgery, suggest that viewing imagery of women with surgically enhanced features affects the desire for young women to surgically enhance their own appearance. A prevalence for this desire is especially noticeable in individuals who invest a large amount of time on social media, avidly follow several accounts and are already unhappy with their appearance.

While we judge our appearances based upon the societally defined beauty standards, the media is a specific channel through which beauty ideals persist, recognised for its influence in the desire for cosmetic surgery. However, like Jeyźa, several individuals adapt the space for positive influencing; creating a sphere for visibility, inclusion and education.

In 2012, Carly Findlay shared a speech titled ‘I Couldn’t Handle Looking Like You’, explaining that “My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand”.

As an individual with both Erythroderma, as well as Netherton’s Syndrome, two forms of Ichthyosis, the Australian author, speaker and appearance activist remains a voice for those often rendered voiceless within society, working to break the social barriers that delegitimise those who are disabled. 

“I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial differences, chronic illnesses and disabilities,” said the 39-year-old.

“Our bodies aren’t disabling, it’s society who is disabling,” Carly told SBS News, reflecting on the Order of Australia Medal she received in 2020 for her extensive work for people with disabilities.

As a successful freelance writer, author of Say Hello, editor of ‘Growing Up Disabled in Australia,’ frequent blogger and positive Instagram personality, Carly is refreshingly honest, frank and forthright in her writings, and her desire to be visible and authentic; regularly snapping outfit selfies to be posted later to her 36k Instagram followers.

“They [selfies] show the world that we want to be seen, that we are not going to change our faces to conform, and that visibility is possibility. We are also making it safe for other people with facial differences and skin conditions to share their photos without fear.”

A largely positive force, Carly serves an unlikely dose of reality, one often confined behind the screens of severely tweaked and edited selfies.

“Since I was a young child, the media has told me that my flaky, red skin is repulsive,” she wrote. “We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole. I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I'm ugly or don't expect me to have body confidence.”

After vocalising a multitude of complaints to the media due to their frequently sensationalised portrayal of Ichthyosis, Carly decided to take representation into her own hands. “I didn't want to read another article about ichthyosis unless I had written it myself,” she wrote in a recent article.

Carly’s dedication to visibility, inclusivity and representation is supported by her consistent posts to her Instagram, as well as her frequent blog posts; her lending of support to Facebook groups dedicated to Australians and New Zealanders with Ichthyosis and her published articles; running the Australian Ichthyosis meet up; speaking on a panel at the All About Women festival on beauty and representation at the Sydney Opera House.

Carly’s successful career is testament to her highly respected presence within the disability community and her continued efforts to educate and better society, in its response to the many who do not resemble the bikini-clad models on their Insta-feed.

While society remains a space through which beauty is mediated at a global level, agreed upon by the masses of curated squares posted to Instagram and consequently, a troubling set of guidelines for young women, positive influencers such as Carly and Jeyźa provide a powerful voice in mobilising the media to provide representation for those with Ichthyosis and other disabilities alike.

Ichthyosis is a complex group of conditions, affecting many and presenting a plethora of challenges when faced with the rigid set of beauty ideals that are inescapable in the media driven society of today.

Nonetheless, it is important to note that we are not alone. The toxicities of online culture may never be avoided, but simply engaging with individuals who utilise their corner to spread messages of visibility and inclusivity is key.

Ichthyosis is not a curse. It is not preventative of success, confidence or beauty and although the journey of self-acceptance may contain several obstacles in its course, we all must take the opportunity to find our ‘lubricant for life.’

Creativity, evocative visual storytelling and good journalism come at a price. Support our work and join the Ensemble membership program
No items found.

With beauty so rigidly configured, seemingly confined to a mythical few on Instagram, the importance of representation and genuine authenticity is more vital now than ever, writes Amy Blair.

I couldn’t tell you the first time I realised I was different. My arms and legs were frequently bare as a child, my closet characterised by a colourful array of shorts and T-shirts. Even so, the inkling was there, like a dormant volcano awaiting a violent eruption. Perhaps the unearthing of such a realisation began at 13-years-old. With my teenage years dawning, the woes of puberty were just beginning to sink their teeth in; the girls got bitchier, the boys got hairier and a vicious battle began to grow.

As I fell deeper down the puberty rabbit hole, it seemed as though I had developed a sixth sense of sorts. I felt the deep burn of eyes upon me as I entered a room, my presence met by curious glances and a fumbling array of uncomfortable questions that permeated my self-image.

It’s that hot sickly feeling down the back of your neck as a boy snickers “lizard” as you walk past him on the bus. It’s that gorgeous little black dress, you know the one; matched with the bitter disappointment as you think, “I better not.” It’s the choice to suffer pants that stick and chafe on a hot day, as opposed to the unrelenting stare of a stranger in the street.

I soon realised, in order to preserve my own self-perception, I had to conform to the gaze of those who I thought could never understand or accept me. I had to choose discomfort to rid others of theirs. 

The shorts were soon replaced by pants and leggings, the shirts morphed into turtlenecks and long sleeves, while the self confidence I once would’ve labeled ‘naive’, vanished into thin air.

Frankly, the dissatisfaction I once felt when faced with my reflection was not simply because my breasts were not perfectly round and perky, because my hips were not yet developed or because my face did not imitate that of a plastic doll. It was because my skin is carved and grooved, the result of a rare skin condition Lamellar Ichthyosis. A unique pattern decorates my body, requiring frequent care and moisturising. 

As if a cave residing hag had cursed me at birth, I resented my appearance, praying for the effortlessly smooth and silky skin that the bikini-donning models on my Insta-feed possessed.

It was not until I stumbled across 22-year-old model Jeyźa Kaelani Gary's Instagram profile, @lyricallydiverse, that I experienced a feeling of representation and an overwhelming sense of pride that I had never felt before for my condition.

It dawned on me. I had never experienced a single shred of representation until this moment. 

My Instagram feed was filled with curated squares that captured the unachievable societal consensus of beauty. Squares that became a model to measure myself. A mindless scroll of my feed was not so mindless after all.

In this era defined by the internet, the beautiful, the rich and the admired are followed, liked and subscribed to, promoting a seemingly white, able-bodied, heterosexual and thin blueprint of beauty.

Influencer culture is pervasive. Selfies are tweaked, edited and perfected to sustain an audience. Beauty is exclusively dulled to one flavour, a flavour so bland, I’d probably liken it to mayonnaise.

“I’ve always viewed myself as beautiful. Even when the world pushes an alternate opinion,” Jeyźa wrote to me on an otherwise bland Tuesday morning. I had eagerly awaited her responses. Having DM’d the American model on Instagram about a week prior, I was desperate to be graced by her wisdom, racking my brains for questions to ask her and preparing to soak in every last word. Admittedly, I was in awe of her beauty and confidence, and mesmerised by our likeness.

“I didn’t have anyone to look at growing up. I knew I had to become my own example even without a guide,” she wrote. “I’d tell my younger self, ‘you’re going to change the world, every negative experience you’ve had will be a crucial part of your success’.”

With digitals published in Vogue Italia, an appearance on the cover of the February 2020 Glamour UK digital magazine, a feature in Target’s 2020 swimwear collection, and not to mention, 29k+ followers on Instagram, the rising model is a trailblazer, breaking the barriers of a famously rigidly configured industry; promoting inclusivity and self-love.

“It was pretty breathtaking,” reflects Jeyźa on her Vogue Italia feature. “I have been featured quite a few times at this point and it never gets less shocking.”

Dedicated to becoming the example she did not have growing up, Jeyźa is aware of the power in her position as a positive influencer. She is a strong force, unforgiving in her presence as both an individual with a skin condition and a Black woman. 

“Oftentimes, expectation versus reality are on completely different spectrums,” she says. “The beauty standards created through influencer culture are harmful because of the lack of inclusivity that it promotes.”

Aware of the pervasive ideologies that often deem those who are not white, heterosexual, or able- bodied a seat at the table, Jeyźa is dedicated in her quest for equality.

I feel like my influence changes those ideologies because I’m willing to declare the need for representation in every realm. Not just visible differences. I stand for equality within the industry in every means of the way.”

What is Ichthyosis?

Ichthyosis is more than simply one condition, but a family, a diverse body of “genetic skin disorders” as published by the Foundation for Ichthyosis and Related Skin Types. Think sunburn, but constant. Characterised by dry, thickened or extremely thin scaling skin, Ichthyosis appears in a variety of forms. Many with Ichthyosis are unable to sweat, or may only sweat partially.

While there is no cure at the time of writing, a strong community persists with several Facebook groups, support groups and foundations; such as ‘FIRST,’ the Foundation for Ichthyosis and Related Skin Types.

All races, genders and ages can be affected, with an array of severities, forming an eclectic community of individuals who although, may have different struggles, share a similar story. Medical complications are often possible, such as “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss” as published by FIRST.

However, Ichthyosis is genetic, not contagious. It is most commonly passed on genetically, even when parents do not display symptoms themselves.

A study has revealed that approximately 300 babies are born with moderate to severe cases of Ichthyosis in the United States, each year. That’s about five to 10 infants for every 100,000 babies born.

“I would describe it as something that is ever changing and affects the bigger parts of your life,” wrote Jeyźa. "I take 2 to 3 baths daily, constantly moisturise, along with taking a medication that slows the chromosome’s production.”

Ichthyosis is often managed with medication and an array of moisturisers. 

My mornings begin like most others. I drag myself out of bed for a quick shower, but as opposed to throwing on some clothes and heading out the door, I have an hour of self-care ahead; moisturising my entire body, it’s kind of like my lubricant for life. If I’m going to move comfortably, avoid flakiness or aching, this part of my day is vital.

“I think it’s definitely really difficult with a young one growing up and just not having anyone to look up to, not having anyone who looks like or reflects them on television or online. It can be damaging to be isolated from those who share such a profound experience,” my mother Bree Taylor announces, as she sits on the plush carpet of her Mosgiel townhouse, basking in the living-room sun while flicking through a photo-album crammed to the brim with photographs of my childhood. 

“As a parent, all I can hope for is my children to feel secure in who they are, but when the media tells them they shouldn’t be, it’s clearly very painful and upsetting. It’s internalised and it can jeopardise their self-confidence.”

With years of dedicated research, so many doctor visits I cannot count and an uncompromising drive to achieve the best life possible for me, Bree maintains a steady wealth of knowledge on Ichthyosis.

“Beauty standards are not real nor are they realistic, they do not reflect an authentic reality and they certainly don’t reflect the reality of those who have something unique about them,” says Bree. “Inclusivity is not just important, it’s a true reflection of the diverse group of people that live within society.”

She recommends that educating children with Ichthyosis on the frequently harsh and often unachievable standards of beauty is important. “Remind your children that they are not cursed, they are not a mistake and that they are special. Uniqueness is what makes the world a special place. Children deserve love and support no matter their condition.”

So where did it begin? The female physique and beauty has always been subject to the male gaze. Photoshopping began in the days we were painted. Jean Auguste Dominique Ingres’ La Grande Odalisque makes for an interesting point of reference. Painted in 1814 and currently available for your viewing pleasure in the famous Louvre Paris, the painting features a lounging nude woman; the curves of her hips are emphasised with her back extended to an unnatural length, her limbs are elongated and her head is small and dainty. Her skin is white and her complexion is clear. 

Today, this altering persists, but we can do it ourselves. With filters that change the entire appearance of your face and with photo editing apps that smooth out the bumps, tuck the waist, widen the hips and plump the lips; beauty suddenly merges into the same form.

One’s physical perception is key to personal identity and begins early in life. While key aspects of measuring one’s ‘attractiveness’ with “innate preferences such as symmetry and small waist to hip ratio,” the socio-cultural environment we reside within is further, a largely determining factor, according to a report on the effects of social media use on desire for cosmetic surgery among young women.

How do I picture this complex beast? Well, it seems that beauty is constructed in a scarily similar way. Instagram is the vehicle through which presumably ‘regular’ women undergo a transformation. 

The product is a recreation of the idealised modern woman. Thin, but not too thin. Large and perky breasts, as well as a shapely set of hips and buttocks. Eyes are bright and white, noses are thin and straight, a painfully Eurocentric ideal. Lips are plumped and large, as if they might burst at any given second.

A study conducted in 2014, discovered that the use of social media is a likely cause of decreased life satisfaction, body dissatisfaction and eating disorder symptoms in young women. 

Furthermore, it’s been consistently found that the exposure to such idealised imagery is harmful. A 2017 study determined that appearance focused activities were highly related to body image concerns in young women.

Further studies on the effects of social media and the desire for cosmetic surgery, suggest that viewing imagery of women with surgically enhanced features affects the desire for young women to surgically enhance their own appearance. A prevalence for this desire is especially noticeable in individuals who invest a large amount of time on social media, avidly follow several accounts and are already unhappy with their appearance.

While we judge our appearances based upon the societally defined beauty standards, the media is a specific channel through which beauty ideals persist, recognised for its influence in the desire for cosmetic surgery. However, like Jeyźa, several individuals adapt the space for positive influencing; creating a sphere for visibility, inclusion and education.

In 2012, Carly Findlay shared a speech titled ‘I Couldn’t Handle Looking Like You’, explaining that “My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand”.

As an individual with both Erythroderma, as well as Netherton’s Syndrome, two forms of Ichthyosis, the Australian author, speaker and appearance activist remains a voice for those often rendered voiceless within society, working to break the social barriers that delegitimise those who are disabled. 

“I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial differences, chronic illnesses and disabilities,” said the 39-year-old.

“Our bodies aren’t disabling, it’s society who is disabling,” Carly told SBS News, reflecting on the Order of Australia Medal she received in 2020 for her extensive work for people with disabilities.

As a successful freelance writer, author of Say Hello, editor of ‘Growing Up Disabled in Australia,’ frequent blogger and positive Instagram personality, Carly is refreshingly honest, frank and forthright in her writings, and her desire to be visible and authentic; regularly snapping outfit selfies to be posted later to her 36k Instagram followers.

“They [selfies] show the world that we want to be seen, that we are not going to change our faces to conform, and that visibility is possibility. We are also making it safe for other people with facial differences and skin conditions to share their photos without fear.”

A largely positive force, Carly serves an unlikely dose of reality, one often confined behind the screens of severely tweaked and edited selfies.

“Since I was a young child, the media has told me that my flaky, red skin is repulsive,” she wrote. “We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole. I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I'm ugly or don't expect me to have body confidence.”

After vocalising a multitude of complaints to the media due to their frequently sensationalised portrayal of Ichthyosis, Carly decided to take representation into her own hands. “I didn't want to read another article about ichthyosis unless I had written it myself,” she wrote in a recent article.

Carly’s dedication to visibility, inclusivity and representation is supported by her consistent posts to her Instagram, as well as her frequent blog posts; her lending of support to Facebook groups dedicated to Australians and New Zealanders with Ichthyosis and her published articles; running the Australian Ichthyosis meet up; speaking on a panel at the All About Women festival on beauty and representation at the Sydney Opera House.

Carly’s successful career is testament to her highly respected presence within the disability community and her continued efforts to educate and better society, in its response to the many who do not resemble the bikini-clad models on their Insta-feed.

While society remains a space through which beauty is mediated at a global level, agreed upon by the masses of curated squares posted to Instagram and consequently, a troubling set of guidelines for young women, positive influencers such as Carly and Jeyźa provide a powerful voice in mobilising the media to provide representation for those with Ichthyosis and other disabilities alike.

Ichthyosis is a complex group of conditions, affecting many and presenting a plethora of challenges when faced with the rigid set of beauty ideals that are inescapable in the media driven society of today.

Nonetheless, it is important to note that we are not alone. The toxicities of online culture may never be avoided, but simply engaging with individuals who utilise their corner to spread messages of visibility and inclusivity is key.

Ichthyosis is not a curse. It is not preventative of success, confidence or beauty and although the journey of self-acceptance may contain several obstacles in its course, we all must take the opportunity to find our ‘lubricant for life.’

Creativity, evocative visual storytelling and good journalism come at a price. Support our work and join the Ensemble membership program
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Beauty and representation in the age of Instagram

With beauty so rigidly configured, seemingly confined to a mythical few on Instagram, the importance of representation and genuine authenticity is more vital now than ever, writes Amy Blair.

I couldn’t tell you the first time I realised I was different. My arms and legs were frequently bare as a child, my closet characterised by a colourful array of shorts and T-shirts. Even so, the inkling was there, like a dormant volcano awaiting a violent eruption. Perhaps the unearthing of such a realisation began at 13-years-old. With my teenage years dawning, the woes of puberty were just beginning to sink their teeth in; the girls got bitchier, the boys got hairier and a vicious battle began to grow.

As I fell deeper down the puberty rabbit hole, it seemed as though I had developed a sixth sense of sorts. I felt the deep burn of eyes upon me as I entered a room, my presence met by curious glances and a fumbling array of uncomfortable questions that permeated my self-image.

It’s that hot sickly feeling down the back of your neck as a boy snickers “lizard” as you walk past him on the bus. It’s that gorgeous little black dress, you know the one; matched with the bitter disappointment as you think, “I better not.” It’s the choice to suffer pants that stick and chafe on a hot day, as opposed to the unrelenting stare of a stranger in the street.

I soon realised, in order to preserve my own self-perception, I had to conform to the gaze of those who I thought could never understand or accept me. I had to choose discomfort to rid others of theirs. 

The shorts were soon replaced by pants and leggings, the shirts morphed into turtlenecks and long sleeves, while the self confidence I once would’ve labeled ‘naive’, vanished into thin air.

Frankly, the dissatisfaction I once felt when faced with my reflection was not simply because my breasts were not perfectly round and perky, because my hips were not yet developed or because my face did not imitate that of a plastic doll. It was because my skin is carved and grooved, the result of a rare skin condition Lamellar Ichthyosis. A unique pattern decorates my body, requiring frequent care and moisturising. 

As if a cave residing hag had cursed me at birth, I resented my appearance, praying for the effortlessly smooth and silky skin that the bikini-donning models on my Insta-feed possessed.

It was not until I stumbled across 22-year-old model Jeyźa Kaelani Gary's Instagram profile, @lyricallydiverse, that I experienced a feeling of representation and an overwhelming sense of pride that I had never felt before for my condition.

It dawned on me. I had never experienced a single shred of representation until this moment. 

My Instagram feed was filled with curated squares that captured the unachievable societal consensus of beauty. Squares that became a model to measure myself. A mindless scroll of my feed was not so mindless after all.

In this era defined by the internet, the beautiful, the rich and the admired are followed, liked and subscribed to, promoting a seemingly white, able-bodied, heterosexual and thin blueprint of beauty.

Influencer culture is pervasive. Selfies are tweaked, edited and perfected to sustain an audience. Beauty is exclusively dulled to one flavour, a flavour so bland, I’d probably liken it to mayonnaise.

“I’ve always viewed myself as beautiful. Even when the world pushes an alternate opinion,” Jeyźa wrote to me on an otherwise bland Tuesday morning. I had eagerly awaited her responses. Having DM’d the American model on Instagram about a week prior, I was desperate to be graced by her wisdom, racking my brains for questions to ask her and preparing to soak in every last word. Admittedly, I was in awe of her beauty and confidence, and mesmerised by our likeness.

“I didn’t have anyone to look at growing up. I knew I had to become my own example even without a guide,” she wrote. “I’d tell my younger self, ‘you’re going to change the world, every negative experience you’ve had will be a crucial part of your success’.”

With digitals published in Vogue Italia, an appearance on the cover of the February 2020 Glamour UK digital magazine, a feature in Target’s 2020 swimwear collection, and not to mention, 29k+ followers on Instagram, the rising model is a trailblazer, breaking the barriers of a famously rigidly configured industry; promoting inclusivity and self-love.

“It was pretty breathtaking,” reflects Jeyźa on her Vogue Italia feature. “I have been featured quite a few times at this point and it never gets less shocking.”

Dedicated to becoming the example she did not have growing up, Jeyźa is aware of the power in her position as a positive influencer. She is a strong force, unforgiving in her presence as both an individual with a skin condition and a Black woman. 

“Oftentimes, expectation versus reality are on completely different spectrums,” she says. “The beauty standards created through influencer culture are harmful because of the lack of inclusivity that it promotes.”

Aware of the pervasive ideologies that often deem those who are not white, heterosexual, or able- bodied a seat at the table, Jeyźa is dedicated in her quest for equality.

I feel like my influence changes those ideologies because I’m willing to declare the need for representation in every realm. Not just visible differences. I stand for equality within the industry in every means of the way.”

What is Ichthyosis?

Ichthyosis is more than simply one condition, but a family, a diverse body of “genetic skin disorders” as published by the Foundation for Ichthyosis and Related Skin Types. Think sunburn, but constant. Characterised by dry, thickened or extremely thin scaling skin, Ichthyosis appears in a variety of forms. Many with Ichthyosis are unable to sweat, or may only sweat partially.

While there is no cure at the time of writing, a strong community persists with several Facebook groups, support groups and foundations; such as ‘FIRST,’ the Foundation for Ichthyosis and Related Skin Types.

All races, genders and ages can be affected, with an array of severities, forming an eclectic community of individuals who although, may have different struggles, share a similar story. Medical complications are often possible, such as “dehydration, infections, chronic blistering, overheating, and rapid-calorie loss” as published by FIRST.

However, Ichthyosis is genetic, not contagious. It is most commonly passed on genetically, even when parents do not display symptoms themselves.

A study has revealed that approximately 300 babies are born with moderate to severe cases of Ichthyosis in the United States, each year. That’s about five to 10 infants for every 100,000 babies born.

“I would describe it as something that is ever changing and affects the bigger parts of your life,” wrote Jeyźa. "I take 2 to 3 baths daily, constantly moisturise, along with taking a medication that slows the chromosome’s production.”

Ichthyosis is often managed with medication and an array of moisturisers. 

My mornings begin like most others. I drag myself out of bed for a quick shower, but as opposed to throwing on some clothes and heading out the door, I have an hour of self-care ahead; moisturising my entire body, it’s kind of like my lubricant for life. If I’m going to move comfortably, avoid flakiness or aching, this part of my day is vital.

“I think it’s definitely really difficult with a young one growing up and just not having anyone to look up to, not having anyone who looks like or reflects them on television or online. It can be damaging to be isolated from those who share such a profound experience,” my mother Bree Taylor announces, as she sits on the plush carpet of her Mosgiel townhouse, basking in the living-room sun while flicking through a photo-album crammed to the brim with photographs of my childhood. 

“As a parent, all I can hope for is my children to feel secure in who they are, but when the media tells them they shouldn’t be, it’s clearly very painful and upsetting. It’s internalised and it can jeopardise their self-confidence.”

With years of dedicated research, so many doctor visits I cannot count and an uncompromising drive to achieve the best life possible for me, Bree maintains a steady wealth of knowledge on Ichthyosis.

“Beauty standards are not real nor are they realistic, they do not reflect an authentic reality and they certainly don’t reflect the reality of those who have something unique about them,” says Bree. “Inclusivity is not just important, it’s a true reflection of the diverse group of people that live within society.”

She recommends that educating children with Ichthyosis on the frequently harsh and often unachievable standards of beauty is important. “Remind your children that they are not cursed, they are not a mistake and that they are special. Uniqueness is what makes the world a special place. Children deserve love and support no matter their condition.”

So where did it begin? The female physique and beauty has always been subject to the male gaze. Photoshopping began in the days we were painted. Jean Auguste Dominique Ingres’ La Grande Odalisque makes for an interesting point of reference. Painted in 1814 and currently available for your viewing pleasure in the famous Louvre Paris, the painting features a lounging nude woman; the curves of her hips are emphasised with her back extended to an unnatural length, her limbs are elongated and her head is small and dainty. Her skin is white and her complexion is clear. 

Today, this altering persists, but we can do it ourselves. With filters that change the entire appearance of your face and with photo editing apps that smooth out the bumps, tuck the waist, widen the hips and plump the lips; beauty suddenly merges into the same form.

One’s physical perception is key to personal identity and begins early in life. While key aspects of measuring one’s ‘attractiveness’ with “innate preferences such as symmetry and small waist to hip ratio,” the socio-cultural environment we reside within is further, a largely determining factor, according to a report on the effects of social media use on desire for cosmetic surgery among young women.

How do I picture this complex beast? Well, it seems that beauty is constructed in a scarily similar way. Instagram is the vehicle through which presumably ‘regular’ women undergo a transformation. 

The product is a recreation of the idealised modern woman. Thin, but not too thin. Large and perky breasts, as well as a shapely set of hips and buttocks. Eyes are bright and white, noses are thin and straight, a painfully Eurocentric ideal. Lips are plumped and large, as if they might burst at any given second.

A study conducted in 2014, discovered that the use of social media is a likely cause of decreased life satisfaction, body dissatisfaction and eating disorder symptoms in young women. 

Furthermore, it’s been consistently found that the exposure to such idealised imagery is harmful. A 2017 study determined that appearance focused activities were highly related to body image concerns in young women.

Further studies on the effects of social media and the desire for cosmetic surgery, suggest that viewing imagery of women with surgically enhanced features affects the desire for young women to surgically enhance their own appearance. A prevalence for this desire is especially noticeable in individuals who invest a large amount of time on social media, avidly follow several accounts and are already unhappy with their appearance.

While we judge our appearances based upon the societally defined beauty standards, the media is a specific channel through which beauty ideals persist, recognised for its influence in the desire for cosmetic surgery. However, like Jeyźa, several individuals adapt the space for positive influencing; creating a sphere for visibility, inclusion and education.

In 2012, Carly Findlay shared a speech titled ‘I Couldn’t Handle Looking Like You’, explaining that “My appearance has afforded me many opportunities, and after so many years of longing to blend in, standing out has meant my appearance is my brand”.

As an individual with both Erythroderma, as well as Netherton’s Syndrome, two forms of Ichthyosis, the Australian author, speaker and appearance activist remains a voice for those often rendered voiceless within society, working to break the social barriers that delegitimise those who are disabled. 

“I constantly have to prove that I am not just a red face. People underestimate the intelligence of and take pity on those with facial differences, chronic illnesses and disabilities,” said the 39-year-old.

“Our bodies aren’t disabling, it’s society who is disabling,” Carly told SBS News, reflecting on the Order of Australia Medal she received in 2020 for her extensive work for people with disabilities.

As a successful freelance writer, author of Say Hello, editor of ‘Growing Up Disabled in Australia,’ frequent blogger and positive Instagram personality, Carly is refreshingly honest, frank and forthright in her writings, and her desire to be visible and authentic; regularly snapping outfit selfies to be posted later to her 36k Instagram followers.

“They [selfies] show the world that we want to be seen, that we are not going to change our faces to conform, and that visibility is possibility. We are also making it safe for other people with facial differences and skin conditions to share their photos without fear.”

A largely positive force, Carly serves an unlikely dose of reality, one often confined behind the screens of severely tweaked and edited selfies.

“Since I was a young child, the media has told me that my flaky, red skin is repulsive,” she wrote. “We are othered, ridiculed and erased by the media and the beauty industry, and treated the same by society as a whole. I do feel fabulous while wearing bright, fun clothing, and I will defy those who tell me I'm ugly or don't expect me to have body confidence.”

After vocalising a multitude of complaints to the media due to their frequently sensationalised portrayal of Ichthyosis, Carly decided to take representation into her own hands. “I didn't want to read another article about ichthyosis unless I had written it myself,” she wrote in a recent article.

Carly’s dedication to visibility, inclusivity and representation is supported by her consistent posts to her Instagram, as well as her frequent blog posts; her lending of support to Facebook groups dedicated to Australians and New Zealanders with Ichthyosis and her published articles; running the Australian Ichthyosis meet up; speaking on a panel at the All About Women festival on beauty and representation at the Sydney Opera House.

Carly’s successful career is testament to her highly respected presence within the disability community and her continued efforts to educate and better society, in its response to the many who do not resemble the bikini-clad models on their Insta-feed.

While society remains a space through which beauty is mediated at a global level, agreed upon by the masses of curated squares posted to Instagram and consequently, a troubling set of guidelines for young women, positive influencers such as Carly and Jeyźa provide a powerful voice in mobilising the media to provide representation for those with Ichthyosis and other disabilities alike.

Ichthyosis is a complex group of conditions, affecting many and presenting a plethora of challenges when faced with the rigid set of beauty ideals that are inescapable in the media driven society of today.

Nonetheless, it is important to note that we are not alone. The toxicities of online culture may never be avoided, but simply engaging with individuals who utilise their corner to spread messages of visibility and inclusivity is key.

Ichthyosis is not a curse. It is not preventative of success, confidence or beauty and although the journey of self-acceptance may contain several obstacles in its course, we all must take the opportunity to find our ‘lubricant for life.’

Creativity, evocative visual storytelling and good journalism come at a price. Support our work and join the Ensemble membership program
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