“For me, what it means to adapt is to be you, to be yourself, but to shine, let your personality shine so people can see beyond the looks”

I’m Amit Ghose, and adapting to circumstances has been something I have had to do my entire life but now I am using my lived experience to help others.

I’ve always had to adapt because I have a visible disability meaning that the first thing I have to do is to get people to see me as a person. This hasn’t always been easy, and it still isn’t sometimes, but I am now on my journey advocating to improve the way we treat each other not just for myself but for others like me too.

I was born with the rare genetic condition neurofibromatosis. As a child at school and within the Asian community, it was incredibly tough. People care so much about aesthetics, about the way we look. During school, kids would make comments and as I got older, people would feel they were entitled to question my life choices because of the way I looked. Those comments that people have probably forgotten they ever said to me have stuck with me for the rest of my life. People need to remember that.

However, one person who never let my condition change the way he loved or treated me was my father. He was my biggest advocate. He instilled in me that I could do just what everyone else was doing. After school, I was accepted into university which was a huge achievement. My father, unfortunately, never got to see me at university as he passed away just before I started. His death was obviously a huge blow for me, for my whole family, but his legacy of being my biggest supporter still remains.

The natural course of life within the Asian community after university is to get married. But marriage and the idea of marriage for me was really difficult because of the wider societal and community expectations. Many people within the community brushed off the idea of marriage or downright told me no one would want to marry me because of the way I looked. This left me feeling unloved. I started to give up on the idea.

Then, my friend in India told me he knew someone who he thought I would be interested in. At first, she told my friend she was too busy to ever get involved with a man from England but my friend gave me her number anyway. We began talking and everything started to fall into place. My friend was right.

The moment I knew she was the one for me was when she confronted me about only showing half of my face to her on video calls. This was something that I would do on all of my social media posts too. She said:

“Amit, if I’m going to marry you, I’m not going to marry half of your face. I’m going to marry all of you.”

She really showed me that I should present me, the whole of me. So, the time came and we decided we wanted to get married but we faced more problems. Her family didn’t accept me. They actually pleaded with her not to marry me at all. Partly because of my genetic condition, partly because I was a man from England and partly because of the way I looked. It was really tough for us. However, despite their attempts to persuade her to go against her wishes, we got married and her family has now come round to me and our marriage. I guess they’ve adapted to their circumstances too.

But my story highlights a problem we have in the Asian community, and society as a whole, that we focus on this notion of the way we look, the way other people will see us, and what people will think instead of what is right and true for ourselves. This is what I’m trying to do now. Through my talks, through social media, through spreading a positive impact I am trying to show how much more we can do to accept each other.

“It’s about the value you can create.”

We must try to be grateful for what the world has given us and use what we have. I am grateful for my condition because it has given me the opportunity to spread this message and to make change.

This blog was written by Megan Morris on behalf of Tales to Inspire.