I’m Amit and I live with a condition called Neurofibromatosis Type 1, also known as NF1.
The left side of my face is affected by the condition, and it meant that I lost my left eye at the age of 11. Growing up I got called a lot of names in school, but I tried not to let it stop me from living my life as I wanted to. I told myself that if they can’t knock me down, then maybe they will start to see the human in me and connect with my personality.
One of the biggest contributing factors to my confidence is how my father brought me up. He never put the focus on my visible difference, ensuring I didn’t let it define me. When I would look in the mirror as a child he would say “smart boy” and call me his brave little child. I came to acknowledge that we’re all different in our own ways and that should be celebrated.
I want to help others to see their true self and not let the opinions of those around them dictate the opinion they have of themselves.
However, that is not to say that I’ve never struggled when walking into new environments and meeting new people. I do wonder in the back of my head what people will think of me, because of the negative reactions I’ve faced from others.
Nevertheless, I do try to embrace who I am and celebrate my condition, because it has opened opportunities for me to get my voice heard on television and radio. In 2011, I was involved with a Channel 4 documentary with Katie Piper called ‘Katie: My Beautiful Friends’. I also did some radio interviews for the BBC about Anti-Bullying Week. Being able to share my experiences, and hopefully help others in doing so, has been so positive for me.
Amit doesn’t let his visible difference stop him from enjoying life
My main motivation for speaking out is to help inspire people with my story and reach those who might be finding life with a visible difference challenging, particularly those in the Asian community. Growing up as an Asian Indian man with a facial disfigurement had its own set of challenges. I would go to a wedding, and I could hear aunties standing near me talking about me, saying “no father will give his daughter to him”. Someone once said to me “put yourself in her dad’s shoes – would you not want the best of the best for your daughter?” It made me think, what is best of the best? Why can’t I be that?
Another person said, “If you were normal, Amit you would find someone so easily”. What is normal?
In 2021, I was lucky to get married to a woman who accepts me for who I am and doesn’t treat me differently just because I look different. She sees me as a person, not as a condition.
I want to help others to see their true self and not let the opinions of those around them dictate the opinion they have of themselves. Education is such an important part of this, and I’d love to be able to educate children, parents and family members about how to accept those of us with visible differences. The support I received from my father was vital and everyone with a visible difference deserves that level of support from those close to them.
We are as much an important part of society as anyone else and should be treated as such.
True inclusivity also goes beyond people. Our society relies on technology, and face-recognition is becoming increasingly common, this is another area where the visible difference community is being left behind. I recently tried to use an app which required facial recognition and the app declined to recognise my face. This made me feel so neglected and unwanted, and showed that people like me aren’t considered in the creation of these technologies.
The more people understand about visible differences, the better. We are as much an important part of society as anyone else and should be treated as such.
Allow your personality to shine through and prove to the world that you are more than your difference.
