Photographer Reveals The Raw Narratives Behind These People’s Unique Appearances
These narratives stand as living testaments to the unwavering human spirit, and the pursuit of one’s aspirations knows no bounds.
Prepare to embark on an extraordinary journey as Sujata Setia’s photography project, “Changing the Conversation,” casts a luminous light on the essence of humanity. Within the embrace of these mesmerizing narratives lies a wellspring of motivation, showcasing that triumph knows no confines, whether they be physical or emotional. Each extraordinary tale resounds with the power to ignite a spark within every individual, regardless of their challenges, beckoning them to embrace their inherent brilliance and pursue their aspirations with unwavering determination.
As words fall short in capturing the profound essence, surrender to the transformative imagery crafted by Sujata. Witness a breathtaking tapestry of resilience and fortitude unfurl before your very eyes in this collection that will leave you spellbound. Through the lens of this celebrated photographer, individuals with disabilities and burn survivors take center stage, embodying unwavering determination and becoming beacons of inspiration. Their stories transcend the confines imposed by society, and they might redefine your paths toward greatness. Have a look!
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“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 12.01pm on August 9, 2016, miracle baby Eden defied all the odds and was delivered by C-section in a room full of doctors, paediatric 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’)
“She was all of 18 when she first laid her eyes on him at a hospital. He had only recently returned from serving in the IInd World War as a Royal Engineer. I wanted him to be mine the moment I saw him, and I got him!” Vera (now 92) says as she blushes. 74 years of togetherness (4 years of courting and 70 years of marriage,) hasn’t weathered their love, you can see, as Mel (now 97) jokes back, “I would have got off sooner with a life sentence!”
“In the course of the photoshoot, I asked them, what the secret to a happy marriage is, and they said, “You’ve got to stick at it. Stand by each other, always. Take the rough with the smooth, and as long as you’ve got one another, you can take on anything.” Mel and Vera have overcome many obstacles in their lives together, one being this pandemic and the loneliness that came with it. For a very long time they were not able to meet their children and other family. Yet they believe that having each other to lean on has been their biggest blessing for life.” So here they are. Mel and Vera. Forever united as one.
“I am giddy, almost numb with excitement from what happened last night. I won the AOP 2021 Open Awards. No! I just wasn’t prepared for this win. I wrote to my best friend telling her how I am sure I will NOT win. The photographers whose work was shortlisted alongside mine was just beyond remarkable. I did NOT stand a chance. I went to the awards ceremony with no business cards or portfolio of my work to handover to potential commissioners or agencies.”
“I did not take a single photo of the event… not even of when they were announcing the winners in my category. Because I just KNEW I WILL NOT WIN. I thought I will go back from this brilliant evening having met some amazing photographers and making some friends in the industry (which I ofcourse did) …and then I heard the CEO of @assocphoto – #Isabelledoran announce my name! I am still crying as I pen this post.”
“This award is a celebration of a more inclusive world. It is an acknowledgment of the fact that we as photographers hold immense power to change the course of humanity. Like the great photographer, @kristinavaraksina said to me last night that we are not here only to make pretty pictures but to say something with our art. To foster change. #changingtheconversation
“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.”
“My 9-year-old daughter returned from school one day and asked me if she is “beautiful.” As a girl child who grew up in a patriarchal society back in a small town of India, I have battled for all of my life with the constructs of beautiful or ugly; boy or girl; normal or abnormal, rich or poor, pink or blue… this world for me has always been divided in binaries, until my daughter started to grow up with a similar world view. And so, I started this series as an effort to work towards the expansion of humanity. A world without exceptions. A world that moves away from binaries. It is an ongoing series.”
“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. 9 years ago, James lost his arm and leg in an accident. Ashley is a congenital amputee. Which means that she was born with the lower part of her right arm missing. “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 shoe laces? 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. Since his accident, James has worked with Japanese gaming giant Konami to personally design and develop his advanced bionic arm – earning himself the nickname Metal Gear Man. Since then, he’s become a speaker, BBC presenter, and model.
“I have a condition called spinal muscular atrophy (SMA Type 2.) I was diagnosed when I was 18 months old. Its a muscle wasting condition. So as I get older, I get weaker. So when I was around 15 years old, I went on a ventilator, full time. A lot of people think that it really gets me down. It did in the beginning but now I just get on with life. I have goals that I want to achieve!!”
“My 24 – hour ventilator has not stopped me from becoming a model and educating people about disabilities. I just feel people need to understand that we are no different from you and so we should be treated the same way as you. We just need extra support. Don’t be scared of using the word “disabled”. Say “disabled”. It is fine.” “I try to educate people about disabilities through humor and through trends on Instagram and tiktok. Many of those posts do well.”
“But I also get a lot of negative comments. It gets a bit much sometimes. A lot of them are borderline death threats. “I am going to unplug your machine.” “I am going to push you down the stairs.” But I get on with what I need to do. I express who I am… my body confidence… through the pictures I post with other people on social media. So that they feel confident in their bodies as well. I just want to say: Disabled people do have fulfilling happy lives. So please don’t think of us as inspirations because we are happily getting on with our lives.”
“Hi, my name is Hattie. I was born with a congenital cataract and congenital glaucoma. This meant I required multiple operations as a baby leaving me with an enlarged black eye. Over the last few years this eye began to cause me pain and the consultant recommended I had it removed and replaced with a prosthetic, or the eye was at risk of rupturing and the pain would not ease. I have spent the majority of my life with a visible difference. I also developed psoriasis a few years ago, with red, sore patches of skin and nail changes. Some of these conditions result in stares and questions from strangers.”
“I always try to keep an open mind to others’ approaches and feel I can now use it as an opportunity to educate and raise awareness. Over time I have grown in confidence, embracing my image and accepting its uniqueness, determined that my self-worth will not be defined by my outward appearance. I hope for a world where individuality is celebrated and normalized and desire to be part of that movement.”
“A crucial part of this journey was for me to find shared experiences. A space where I could feel normal. I wouldn’t wish this upon anyone. No… never! And so, for the longest time, I lived with the understanding that I am different. Until I met Raiche and other burn survivors.” @catrinpugh Catrin was returning from a Ski trip in the French Alps, when the coach’s brakes failed and the crash happened.”
“96% of her body suffered third degree burns leaving her with a 1 in a 1000 chance for survival. Following three months in coma, 200 surgical procedures and 4 years of rehab, Catrin defied destiny. She recently graduated from @kingscollege.london and is now working as a physiotherapist while helping expand the horizons of this world through her work alongside the incredible @raichemederick_”
“Raiche was 18 months old when she was burnt in a house fire. Being a Black-British; female; burn survivor has come with its multiple narratives for Raiche. It is a story of marginalisation at multiple levels. A story of perceptions. The way you look, matters a lot in Black culture, so that was a long journey of acceptance for me… understanding, where I actually stand. I felt like an outsider, but judgement was quick to come by from others as well. “Oh you don’t talk Black, you don’t act black” I was often reminded.”
“Raiche and Catrin came together for this shoot so we could explore the concept of finding oneness in our differences. The role of finding our community, our tribe in helping us navigate the parody of life. …to be… to feel… normal. Together these two amazing women have and are continuing to help redefine “beauty” and normalize facial differences in this world. I asked them what they feel about being called an “inspiration” every so often. “Ya! Im living my best life. I wonder sometimes when people walk up to me and say I inspire them. While I am just living my life… I somehow inspire. I guess it’s because scars have a beautiful way of telling a story… a shared story of many commons.”
“In September 2013, Sassy lost her sight to a deteriorating eye condition called Uveitis Iritis. The vision loss started at 14 and she lost major chunks of it by the time she was 16. 8 years ago, she went in for an eye operation with the knowledge that the results could go either way. Her eye had had so many operations on it earlier that it had become too weak and damaged and there was a high chance that it could not withstand another.”
“Yet, the eternal optimist – Sassy, went in to the surgery with a positive mindset. Unfortunately, however, she came out of the surgery, with blood over her eye… which meant that no light could get in. Once the blood subsided… Sassy could see light or what you can call “light perception.” She can tell day from night. But that is all! When we went out for her photo session, I noticed Sassy looking towards the sky… Her beautiful eyes were chasing the light…”
“The next five years were a rollercoaster of emotions for Sassy. “I have been diagnosed with depression. I have taken it out on people I care about the most. I get angry and frustrated. And there are days I have truly wished that I could turn back the clock and never have the operation. I want people reading this to know that no matter what, you are not alone and that you will come out on the other side. Because here I am… telling you this story… BECAUSE I GOT PAST IT!!” She says.
“For years I was tethering on the edge between two worlds. The sighted world and the blind world. As my world became darker. More shadow than light… I was left behind. I was still me, I wasn’t different, but to others I was. I had changed. With my future distorting before my very own eyes, I didn’t know which path to take. But with each step, it became triumph, a celebration and a new milestone reached.”
“I face misconceptions, prejudice, and discrimination. But I also face love, support, compassion, and inclusion. I see beauty everywhere I go. I hear the laughter and I feel the joy. Now I stand out from the crowd and I shine. I carry the weight of who I am with pride. Everything I want to be and everything I can be.” ~ poem by @sassywyattofficial (The girl who sees light.)”
“Hi. My name is Erika. I have Neurofibromatosis type 2, (NF2), a rare genetic disorder that causes tumors to grow on nerves, mainly in the brain and spine. NF2 takes and continues taking, and while it does, we are left with physical losses like loss of vision, hearing and facial function, as well as less tangible ones like the loss of communicating with those we love, lost connections, relationships and opportunities.”
“Many people don’t talk about the importance of grieving these losses, just as one would grieve the loss of a loved one. Processing grief is tiring and grueling but ultimately, it renews our strength. As we are thrown into yet another cycle of grief and loss, amidst surgeries, radiation and drug trials, we find slivers of hope.”
“So, we keep going, adapting, evolving and navigating the world we were not quite prepared for. We celebrate life and advocate for ourselves and others. And though we continue to face the mental, physical and emotional challenges, we don’t do it alone. We find and cherish our support systems – those who never left, but instead learned new ways to connect and communicate, held us up and never questioned our strength or our beauty, even if we might have done so, ourselves.”
“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 world’s premium institutions – King’s College London. She now aspires to become a physiotherapist. Infact 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 normalising facial difference. She is all of this and way way more…”
“I was 16 when he spat on me… this boy who kept following me. That’s when I decided to start loving myself. It was a choice I made consciously.” she said. When I met Hannah for this shoot, I had to give no instructions. She asked me simply what my purpose was and I said “A world without exceptions”. She then went and sat at the spot against the backdrop and looked straight at the camera and her eyes; her soul spoke back to me. This is her story.”
“Hi. I am Hannah. I am 18. I was born with a rare genetic condition called Hay-Wells Syndrome. There are only about 30 other people like me in this world. My condition has left my hair, teeth, and skin undeveloped. It all started in college… the bullying. That’s when we become self-conscious and start noticing the differences. It was too much, just too much to bear. I developed an eating disorder as a result. I am still battling with it.”
“I remember retaliating if they bullied me. I knew deep down inside that it wasn’t my fault but I couldn’t stop myself. That is what the bullies wanted. They wanted power over me. They wanted to dim my light. But instead, I decided to dim theirs. I started to ignore them and their jokes. I have forgiven them because everyone deserves a chance to redeem themselves. Our younger self does not represent us as an adult.”
“If people stare at me now… which they do… all the time… then I just smile at them. I encourage people to ask me questions about my condition because I want to increase awareness about disabilities. That is why I became a model; so I could represent my tribe. I want this world to become a collective union, where we can all embrace each others’ uniqueness. And until that doesn’t happen; I promise to never judge you, laugh at you, ridicule you or make you feel unworthy… even if you choose to not do the same for me.”
“Because I am Me. I am kind, strong, compassionate, and filled with an inner glow. Because I am more than just a “rare genetic condition”. ~ Hannah
“Aged two and a half years young I was burned boiling water whilst playing a game of ‘Hide n Seek’ with my sister. I was hiding behind the bathroom door and accidentally fell backwards as my sister pushed the door open. I was rushed to the local hospital where we were told I wouldn’t survive. I was quickly transferred to another hospital and put on life support with no hope of survival, but weeks later I pulled through.”
“Growing up I was taught to embrace my body and was often told I was beautiful but as my 20s approached I began to hate my body. One day whilst walking across a park with my mum I was approached by a lady that told her I could be a runway model. My mother and I went to the agency later that day and whilst there I was told to fill out some forms. On the forms it asked whether I had any scars. I showed the form to my mother and was quite upset. She told me that it was okay and that I needed to be honest on the form.”
“When the lady came to take the form, she read it and quickly ushered me and her mother out of the agency. She told me that I could perhaps be a hand model but couldn’t possibly be a runway model with scars. I was very upset by this and my world was turned upside down, and went on to suffer with depression, anxiety and suicidal thoughts.”
“Six Years ago, I walked London Fashion Week – twice – and this September I did it yet again. Through my campaigning, standing outside London Fashion Week protesting with groups of ladies, I have now shown that anything is possible and everyone should be included in society. I’m now in the process of setting up @lovedisfiguretalent agency so that we can see everything Diverse and Equal.”
“I am a Burn Survivor Thriving, Campaigner for people with Visible/Hidden Difference & Disabilities. I also hold two accolades: Point of Light Award & Boots Wellness Warrior, Women of the Year Award.” ~ Sylvia
“On 14 February 1990, flight IA605 flying from Bombay to Bangalore, crashed killing 92 of 146 people on board; three of whom were Tulsi’s mother, father, and 5-year-old brother.
“I remember fighting with my brother about who will get to sit on the window seat and the next thing I hear was my grandma’s voice.”
“Tulsi your mum, dad and Kamlesh are no more.’ Next few weeks were a blur and then came the time to meet the new me. Not the 10-year-old boisterous Me… but the orphan, burn survivor Me. From there on the word “ugly” became my identity. ‘Who will marry her? Who will give her a job? She is so ugly!’ – that sort of became my narrative at 10. Growing up, job rejection letters stated my face wasn’t fit for the job.”
“Life forced me to sign on for social benefits. An incident that day changed my life. I was waiting for a bus to go to the job centre and a car pulled up right next to me. Next I heard 4 men shouting at me, ‘You are so ugly. You should have died.’ I came very close to giving up that day. I came very close to taking my life. But instead I chose to NOT LET MYSELF DOWN. I got on to the bus and reached the job centre to sign up. The lady there was just the most compassionate person ever. She made me realise that there is goodness in this world.”
“That was a turning point in my life. That’s the day I realised that maybe I’m not the most beautiful person in the world but I am certainly not ugly. I chose to face my trauma and I healed myself. I am now a reiki master. A spiritual coach. I help people with generational trauma and abuse so they are able to break that cycle. I am a model/ influencer/ speaker… things that my 10-year-old self wouldn’t imagine doing. Because she was told she was ugly.”
“Will you be able to hold that little 10-year-old You in your arms now and tell her with conviction that you will protect her?” I asked Tulsi. “OF COURSE YES!! I will protect her and together we will and are living our best life,” said @tulsidivine108. Today on #worldmentalheathday I share this story and I hope it gives you courage. Mental Health is not a punishable crime. I hope we are all able to normalize it one day.”
“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 the 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… AM A CELEBRATION!”
“Like everyone else in India, I grew up with the notion of ‘norms.’ Must get married early, must have children soon after, nurture them so they grow up to marry and procreate to perpetuate the same cycle of ‘norms’… yet again. But the universe had other plans for me. I fell in love with an extremely progressive man, who challenged my very being… and it broke me.”
“Divorcee – I was the first in our family to carry that “tag” – and the very society I tried to defend was the same that branded me “a failure.” For years I kept my divorce to myself, sparing my parents the grief… living a dual life. In all of this, my biggest support systems were my in laws and ex husband. My path of changing the conversation started then.”
“Mother – I’ve always yearned for children but I also knew I only wanted to bring a child into the world where it would be greeted with love. And that love started with me. Single Mother – Following my divorce, I told myself that if by 38, I hadn’t found a loving partner who was capable of raising a child born off love, then I would once again discard the societal norms and do this on my own.”
“I was turning 38 in October 2020 and I had by then realized that my “fail safe” plan was now actually my path. “Oh! so you are a feminist,” some said… almost like it was an accusation. “You don’t think you need men anymore?” They asked. “You are being too picky Pavithra. You should just settle down. Just find a husband. Any husband.”
“And then there was a small but beautiful tribe of friends and family, especially my brother and his wife who stood behind me like a rock. Finding a Sperm Donor and going through IVF – It wasn’t easy. But, once I made up my mind, it was almost like the universe came together to make it happen for me. In Dec 2020, Jaedon was conceived – my beautiful Christmas blessing.”
“To my gorgeous son, your birth story is one of empowerment for your mother- as a woman, as an Indian woman, I have broken through the prison our society and I myself built for me. It will be a long journey from here on. But it will be one lived with freedom and abandon. Because I choose to be ME. Unapologetically ME. “~ Pavithra
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