Change the conversation

  • Dates
    2021 - Ongoing
  • Author
  • Locations Leeds, Wales, City of London

My 8-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.

© Sujata Setia - Image from the Change the conversation photography project
i

Catrin - “I’ve never been photographed like this before… with all of my scars, I mean.” Catrin said to me. It left us both thinking of what is the limit on 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 ourself that our lives are better? But not too much… so we can bear looking at them? 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. To the prying eyes that meet her every time she steps out of the house, she looks back at them with tenderness and empathy. “If my scars make you feel better about yours then I am happy for you. I understand you. And that’s what I expect from you as well. Empathy, not sympathy. My scars make me special… unique… differently beautiful. They are life’s brush strokes… and I am in love with this painting.” Scar… not Scary!

© Sujata Setia - Image from the Change the conversation photography project
i

Catrin - “I’ve never been photographed like this before… with all of my scars, I mean.” Catrin said to me. It left us both thinking of what is the limit on 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 ourself that our lives are better? But not too much… so we can bear looking at them? 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. To the prying eyes that meet her every time she steps out of the house, she looks back at them with tenderness and empathy. “If my scars make you feel better about yours then I am happy for you. I understand you. And that’s what I expect from you as well. Empathy, not sympathy. My scars make me special… unique… differently beautiful. They are life’s brush strokes… and I am in love with this painting.” Scar… not Scary!

© Sujata Setia - Image from the Change the conversation photography project
i

Catrin - “I’ve never been photographed like this before… with all of my scars, I mean.” Catrin said to me. It left us both thinking of what is the limit on 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 ourself that our lives are better? But not too much… so we can bear looking at them? 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. To the prying eyes that meet her every time she steps out of the house, she looks back at them with tenderness and empathy. “If my scars make you feel better about yours then I am happy for you. I understand you. And that’s what I expect from you as well. Empathy, not sympathy. My scars make me special… unique… differently beautiful. They are life’s brush strokes… and I am in love with this painting.” Scar… not Scary!

© Sujata Setia - Image from the Change the conversation photography project
i

Joannè and Marcus - 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 everyone 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Joannè and Marcus - 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 everyone 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Pavithra and Jaedon - 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 realised 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

© Sujata Setia - Image from the Change the conversation photography project
i

Hannah - “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. Thats 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”.”

© Sujata Setia - Image from the Change the conversation photography project
i

Hannah - “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. Thats 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”.”

© Sujata Setia - Image from the Change the conversation photography project
i

Shelby - “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 humour 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Shelby - “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 humour 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Shelby - “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 humour 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Shelby - “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 humour 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Shelby - “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 humour 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Shelby - “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 humour 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Ashley, James, Elara - “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 realises 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.

© Sujata Setia - Image from the Change the conversation photography project
i

Ashley and Elara- “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 realises 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.