Photographer Sujata Setia is the Gold winner of the AOP Open Award 2021-2022 with her powerful series of images 'Changing The Conversation' Verified "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.
And also, @arianagrande - I love you. " @shelbykinsxo
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