We recently had the pleasure of inviting Amit Ghose to our Diversity and Inclusion forum for National Inclusion Week to share about living with a visible disability.
For the International Day of People with Disabilities, we followed up with Amit to hear more about his experience, as well as his insight into whether people with disabilities are successfully included in the workplace and what more needs to be done.
What was your experience of growing up with a disability?
I was born with a condition called Neurofibromatosis type 1, more commonly known as NF1. It causes tumours to grow on the nerves anywhere in the body; for me, they predominantly grew on the left side of my face in a rather visible way. It’s not something that I can hide, and I have memories of going into primary school and not having any friends because children wouldn’t want to sit next to me. I really tried and struggled to fit in. I used to dread P.E. because the teacher would say to pair up with somebody and I would be left standing and waiting, then having the embarrassing moment of either pairing up with the teacher or with someone who was nominated and didn’t want to be with me.
Secondary school was a little better, but that only happened through things that I enjoyed doing, like playing cricket, and people recognising me for my personality rather than my disability. People always have a tendency to judge based on appearance, but that only lasts until you embrace your personality and let it shine. That started opening up doors for me. People with disabilities and disfigurements grow up fighting without a choice, so they have a different way of dealing with life, often thinking outside the box because it’s what they had to do to fit in.
When you meet people for the first time, how would you prefer them to approach your disability, if at all?
I can only give my personal preferences, and it may be different for someone else, but saying ‘What’s wrong with you?’ as soon as you see that a person is visibly different is not the right way to go about it. I don’t always want to talk about it if the time and place isn’t right, so be respectful of those boundaries and wait for the right moment. Be genuinely interested and have empathy for the person, asking open questions: ‘I notice that you’ve got this visual condition, may I ask what it is?’ Never make assumptions; I’ve had people assuming that I’m deaf and gesturing to me in sign language, which I can’t interpret!
When people are staring at me, which I get a lot and I’m sure others with visible disabilities do too, I will go up to them and politely say, ‘Hello, how are you? I noticed that you were staring at me, would you like to know about my condition?’ I was at a train station when a couple were staring at me, I went up to them and we had a wonderful conversation. Next time you see somebody who is visibly different, rather than staring and trying to figure out what’s wrong with them, just give them a smile, because that can go a long way.
How do you continue to remain positive when you’re feeling overwhelmed?
People ask me a lot whether I’m always this confident, and the answer is: I’m not. When I look in the mirror and question myself or feel down, I used to fight that feeling, but now I go for a walk or do something I enjoy and let it pass.
I was at a college recently, and when I started the talk, I asked, ‘How many of you in this room post photos of yourself on social media?’ Some people put their hands up. I asked, ‘How many of you go back after half an hour to check how many likes you’ve got?’ Again, people put their hands up. Finally I asked, ‘If you’re not happy with the number of likes you got, how many of you feel down or even remove that picture?’ No one put their hand up, but I could see everyone smiling and smirking, thinking: damn, I do that.
I used to do that. If you go onto my Instagram and see any of my older photos, they’re all of the right side of my face. You truly have to learn to accept yourself and your disability – or your imperfection, whatever that is – before you can expect others to open up to you and accept you.
Do you think that the thinking-outside-of-the-box mentality you mentioned might make people with disabilities better at certain jobs than those without?
Not necessarily better or worse, but different. At the moment, I think organisations treat disability and inclusion as a tick-box activity which they have to do, they’re not looking at the benefits it can bring. There are 1.7 billion people in this world who are disabled, and in the UK it’s about 15% of the population; could you imagine the collective power that people with disabilities would have when they come together and are given opportunities to shine?
The problem is that we’re very behind on the conversation around inclusion and accessibility. For example, how many people do you see in the hospitality industry with a disability or visible difference? Not many. Does that mean that they’re not good at those jobs or that they’re not applying? Absolutely not, but there’s a reluctance and fear to put people that look a certain way in that type of role. We need a shift in mentality to open up the doors and welcome people from all walks of life, because those people are going to bring in unique ways of tackling challenges in the workplace.
How do we further that conversation?
More organisations need to start talking to people who have lived experiences with a disability, because they’re the ones who are going to be able to give the most valuable feedback about what they need. One of the things that I ask organisations is: do you have a way on your website for those who are blind to apply for a job? The answer most of the time is no. It’s not that they don’t want to, it’s just that these things haven’t crossed their minds because they’ve not had that conversation. As soon as we start bringing conversations around accessible to everybody, that’s when we’ll see a shift in the right direction.
There’s an incredible organisation called The Valuable 500, which is a partnership of 500 companies across the globe who are putting disability inclusion at the top of their agenda. One of their programmes, Generation Valuable, encourages C-Suite leaders to work with a person of disability from their organisation to share ideas and best practice. This initiative is going to encourage more and more people with disabilities to get into the C-Suite in the long run.
What is the role of representation in encouraging people with disabilities to progress in the workplace?
The percentage of people who disclose a disability in the workplace is not a true reflection; the percentage is a lot higher, but there’s a fear that disclosing it will stop them from progressing in their career. When I opened up about my condition and wrote my first blog on LinkedIn, ‘I’m visibly different and proud’, so many people thanked me for it and said that it had encouraged them to be more open about who they were. Making it okay to talk about these things in a safe forum will encourage others to be open in turn.
Have you had many encouraging encounters since you’ve begun to speak openly about your disability?
There have been so many stories, and it’s what inspires me to keep doing this; I can tell you two brief ones. My wife originally pushed me to make videos about my condition on TikTok to help people, so I made a video and started talking about my Neurofibromatosis and embracing who I am. A girl from South Africa sent me a message to say, ‘I’ve got Neurofibromatosis as well, but the tumours grow on my legs. Swimming is really important to me, but I can never go because people will see my tumours and my friends might not want to hang around with me.’ All I said to her was, ‘Do you really want friends who won’t accept you for who you are?’ She said thank you and I thought that was it. Two weeks later she sent another message and included a screenshot of her Facebook status. It was a picture of her in a bathing suit with a caption saying, ‘I’m going swimming. I’ve got Neurofibromatosis, this is me, and I own it.’ I asked her how she felt and she said that opening up had made her feel epic. It turned out that one of her university supervisors also had Neurofibromatosis and by seeing that post they gelled. That was incredible.
When I started doing talks, I went to speak at a school in Birmingham. A young man put his hand up and asked about my eye and whether I could drive, and was pleased to hear how I was able to get on with my life, then after the talk he came and took a picture with me. Just four weeks ago, the headteacher sent me a blog that his mother had written on the Heart Foundation’s website. It turns out that this young boy had already had four heart surgeries and was waiting for a transplant. He went home the day of my talk and told his mum that he wanted to be a motivational speaker like me, and now goes around talking about his heart condition to everybody and anybody he walks into. This is why I’m doing what I’m doing, because of the impact it’s having on people, and I love that.