When my 8-year-old daughter came home to ask me one day if she is “beautiful”, it left me wondering what to say to her. What is the definition of this word, really? My husband and I are both Indians who live in the UK. But our daughter is British. She may one day wonder why her skin is darker than her other British friends.
I don’t want her to one day come to me asking me the same questions that defined the concept of beauty for me as a child. I want her to be able to grow beyond these constructs. Define her own version of what is beautiful. Be inclusive and appreciate that true beauty lies in the fact that we are all unique and different from each other.
And that is where this series came about. I have named it “changing the conversation”. Changing conversations around the meaning of beauty. Changing conversations around “scars”. How much can we see? Are we all becoming a part of the world where scars need to look “pretty” too? Just enough, so we can use them to remind ourselves that our lives are better, but not too much… so we can bear looking at them?
This is an ongoing series but I wanted to share stories from the lives of the inspiring people I have met along this creative journey so far. I am hoping deeply to “change the conversation” in my own small way through this work. Living in this world through my daughter’s eyes has changed my artistic language. For a long time, I have stayed away from the conversations and focused on the magical innocence of childhood, but now I am hoping to, through my work, find an alternative to the way we conventionalize this world. I hope to receive your love and support in my endeavor.
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Catrin
She was returning from a ski trip in the French Alps when the coach’s brakes failed and the crash happened. “I remember thinking of my family in those last moments, just before the crash happened. The driver was a hero. He did not abandon the coach. He instead warned all passengers of the incumbent crash. He died but he saved all our lives,” recalled Catrin. 96% of her body suffered third-degree burns leaving her with a 1 in a 1000 chance for survival. Following three months in a coma, 200 surgical procedures, and 4 years of rehab, Catrin defied destiny. She lives… and she lives with elan. She motivates, she inspires and she initiates conversations that redefine “beauty”… that help in the expansion of humanity.
A few weeks ago, Catrin visited a coffee shop with her mother and the lady serving there patted Catrin on her back. When Catrin turned around to respond, the lady asked “Sorry! What happened to you?” Politely and patiently, Catrin lent her life’s narrative to that stranger in the hope that the next time she met someone with a facial difference, she might consider not staring at them and then asking them a similar question. For Catrin is way more than a 96% burn survivor. She is a young girl with a million dreams. She just finished her degree from one of the world’s premium institutions – King’s College London. She now aspires to become a physiotherapist. In fact, moments before our shoot, Catrin finished sending off her application for a job opening, in the hope that she is chosen purely on merit and the amount of hard work she has put into achieving her goals. She is a human. She is insanely fun and acutely thoughtful. She is a great listener and an incredibly articulate orator. She is a fighter. She is a movement. She is the voice and face for change; for normalizing facial difference. She is all of this and way way more… She is not just her scars.
James and Ashley
“I have wondered what it would be like to have more than one child if I need to hold them both tight at the same time,” James said as he laughed casually. Not a hint of sorrow… not a moment wasted in questioning destiny as to why them? 9 years ago, James lost his arm and leg in an accident. Ashley is a congenital amputee. This means that she was born with the lower part of her right arm missing.
I went to their home for this photo session with the assumption that there would be pain… a hidden moment of anger… silent grief, but what I was faced with was strength, belief, and like they said, “persistence”.
“I didn’t want to have children because I thought I wouldn’t be able to hold her. How will I support her head while feeding? How will I tie her shoelaces? Or change her clothes… but it all worked itself out. Elara realizes that mummy and daddy just have to do things differently. So she works with us on solutions.” “You know how it is… with being limb different… you just have to be persistent.” Ashley is a successful model and an advocate for families that have a limb different member, which includes sharing helpful tips through her social media platforms.
Since his accident, James has worked with Japanese gaming giant Konami to personally design and develop his own advanced bionic arm – earning himself the nickname Metal Gear Man. Since then, he’s become a speaker, BBC presenter, and model. They have the most beautiful 2-year-old daughter Elara, who truly is a ray of sunshine. Meeting them threw light on my own capabilities as a person. So often I have questioned life and circumstances… given excuses and said, I could do better if life was fair to me… No more… no more will I wait for life to fix its course… I will instead fix mine. Because circumstances don’t define you… You do!
Joanné
I first got drawn to Joanné’s profile on Instagram. A woman who wears her heart on her sleeve… loves deeply and forgives freely. She has this carefree abandon… like she has invisible wings. When I invited her over for a shoot with her beautiful son Marcus, she asked me if she could play some music. “For positive vibes,” she said. I asked her about her journey. Growing up with Albinism… going to a mainstream school… bullying became an essential part of Joanné’s childhood. But when she spoke of it, it was like she had released that anger from her soul, for a childhood lost; for innocence stolen. Like she had forgiven each and every one of those who had called her names… said she looked like a ghost… There was this silent strength in the place where I was looking for anger… a sense of freedom where I hoped to find self-doubt. Freedom from the fear of being continuously judged and pulled down.
Freedom from worrying that her condition made her different from others… But instead this belief… that her “different” is profoundly beautiful and endlessly unique. “I choose to live life unapologetically,” she said to me. And indeed she does. Meet Joanné. To me, she is the definition of generosity, passion, forgiveness, and the belief that our life is a culmination of the choices we make and not what others choose for us.
Cheryl
“101 Dalmatians. Cookie dough. Spotty Face. Those were the names my classmates secretly kept for me. Growing up, I hated myself. I hated everyone around me. No one looked like me… I didn’t look like them. I thought I was ugly… horrible. Those feelings took me to a very dark place. My relationships suffered… with people I loved the most… Until 3 years ago. My children were the turning point for me. I remember that day so vividly. We were going on a family holiday and I was picking clothes that would help me cover myself. I didn’t want to be seen… …and I just asked myself this one question: ‘What kind of a role model am I to my children, if I can’t embrace who I am?’ I don’t want them to worry to fit in. I want them to be comfortable with who they are. And so that day, I chose to be ME! Hi, my name is Cheryl. I was born with congenital melanocytic nevus (CMN). These are my scars. This is me. I love me. I embrace myself. I wear me with respect, confidence, and endless joy, for me… I am a celebration!”
Amber
“My belly had become so big, doctors thought I was going to have twins. My stomach muscles completely split, to the point that the doctors could barely distinguish them during the C-section. They said it was the worst damage to stomach muscles that they had ever seen…. …. And then our Emilia was born, weighing 12lbs and 14oz. I became a mother to this miracle. My little child…” “Hello! My name is Amber. I am a mother. I have scars. I will wear my scars like a jewel on my body and my soul. I celebrate my scars.”
Chelsea
“I was told my child won’t be born alive. At my 20 weeks pregnancy scan, she was diagnosed with a cystic hygroma – a fluid-filled sac that results from a blockage in the lymphatic system. Doctors feared that the large cysts compressing her airways would potentially lead to fatal breathing problems at birth, and we were given the devastating news that Eden wouldn’t make it past the first day. But at 12.01 pm on August 9, 2016, miracle baby Eden defied all the odds and was delivered by C-section in a room full of doctors, pediatric surgeons, and nurses. She was born with a lymphatic malformation in the form of a mass on her face and neck. Five years and nearly 20 surgeries later, Eden has kept surprising doctors and defying the odds to become a perfect, happy and beautiful little girl. Since Eden was born, I have become her advocate in a bid to help kick the stigma of her visible difference and disability. I won’t deny that unfortunately, Eden has been subject to many nasty comments from trolls online about the way she looks. But none of that will stop me from being my daughter’s voice, by standing up for Eden and everyone with a visible difference.” Chelsea, mother of Eden Sue (The girl who is ‘differently special’)
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