Caption
Photographer Sujata Setia is the Gold winner of the AOP Open Award 2021-2022 with her powerful series of images 'Changing The Conversation'
"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"."
@hannahharpin
