Overcoming Labels: Amit Ghose Journey Towards Inclusion and Acceptance

Are you ready to redefine self-love and acceptance in a world that often emphasizes our differences? This enlightening conversation with Amit Ghose, a passionate advocate for individuals with visible differences, will challenge you to do just that. Born with neurofibromatosis, a condition that causes tumors to grow on nerves, Amit’s journey has been one of courage, resilience, and transformation. From finding his identity and confidence on his school cricket team, he has become a global voice of empowerment and acceptance, using his story to inspire others to embrace their uniqueness.

Our conversation goes beyond Amit's personal triumphs to discuss broader issues of self-acceptance and the complexity of human identity. We question society's focus on 'inspiration porn', the phenomenon of turning people with disabilities into sources of inspiration for overcoming adversity. Instead, we argue for understanding the human experience in all its dimensions and recognizing the values embedded in it. We look at the power of self-validation, acknowledging our worthiness, and how small, consistent improvements can help us navigate life's challenges.

We also delve into the critical role of disability inclusion in business, exploring the potential impact of having leaders with disabilities at the C-suite level. We challenge the prevalent tick-box approach and call for a more comprehensive strategy that genuinely values equity. We touch on the issue of unconscious bias, looking at how media and films often perpetuate stereotypes and biases. This episode is a call to action to redefine self-love, acceptance, and disability inclusion. So, join us on this journey with Amit Ghose, and let's start making a difference together.

Amit's new website: https://www.amitghose.co.uk/

Transcript

NEIL: 0:01

Hello and welcome to AXSChat, I'm delighted we're joined to by Amit Ghose who is an advocate for facial difference, and I came across Amit via LinkedIn, someone that we've had on AXSChat before, which is Phyllida Smith who runs face equality international. Amit is doing fantastic work, self‑advocating but advocating for others that have visible differences and that really want to be open and start communicating about themselves and bringing confidence to other people. So, I thought that stuff that Amit was doing was of real interest to everyone but especially to our community and so we immediately connected on LinkedIn and here we are. So, Amit thank you very much for joining us today, so real pleasure to have you with us. Can you tell us a little bit about your story and why you got involved in advocacy. Summit

AMIT: 1:05

Thank you so much for having me it is an absolute pleasure to be here, we caught up on‑line and talking about the vibe and energy it is so good and looking forward to this session. To tell you about myself then. I was born with a rare genetic condition Neil called neurofibromatosis, it's a name that many can't pronounce, let alone the pain that you go through with this condition. It is more commonly known as NF1 it is tumours that grow on nerves, it can grow anywhere in the body, internally, externally, for me it grew predominantly grew on my face, on the left hand side on my face making me look accessibly dump, throughout school and throughout growing up, I faced various different challenges, people staring, commenting and people singling me out where there's a group photograph or various small things that happen regularly, at the age of my 11, my left eye was removed and I was left with an empty eye socket wearing an eye patch, can you imagine going to school at 11 with an eye patch you're there waiting for children to give your comments and I got all the comments under the sun. But for me, as any young person you have hobbies, you have likes, for me I really enjoyed playing cricket. And I used to come home every day and play cricket by myself, every day I would come home, and I would bowl to a set of stumps my dad bought me, and I'd play every single day and I'd never have the courage to go to school and stand in front of the children that were playing and say they let me join in. But one day I got that courage. One day while I was walking out of the school, I saw them playing and I was like hey can I have a bowl. They were laughing and mocking me saying no. Eventually they handed me the ball and the batsman were holding his ban with one hand and he was like what's this going to be, I came in running in, the ball pitched he swung and missed. And everyone just stared. Like what is going on here? They were like do it again. I bowled another one and I did it again. On the third time in my head I was thinking, I'm going to hit the stumps now, a Yorker on his feet and I'm going to get him out and I did exactly that. And the next day, the PE teacher came up to me and said did you want to join the school cricket club, I did, I became the highest wicket‑taker that year up until that point. Exactly. And the shift and the reason why I'm telling you this story was I became Amit the guy who plays cricket. And before that, it was Amit the guy with the funny face, so it is that shift in mind set, it is that shift in expressing your personality, embracing who you are, that opens up everything. Fast forward 20, 25 years, I'm married, I'm working, I've had a successful career in sales, for the last 15 years. And one day I had this spark to create a TikTok video, talking about my journey. And I made a video, and I said I was born with this condition, I want to help, support and inspire people now with my story. That video, that initially made within 24 hours got over 100,000 views, within three months I was on over 85,000 followers, people like lad Bible, New York Post, Washington Post, Birmingham mail, you name it, there was numerous amount of news articles that were done on this view rattle that I'd gone through, and now I'm in this situation where I want to go around the world and travel and talk about confidence, talk about embracing who we are. Talk about how to let our personalities shine. Talk about loving ourselves, starting with ourselves. And that's how I came across you wonderful people here and I'm so excited to go deeper into this conversation now.

NEIL: 5:13

I just muted myself, failing at something that I should be better at by now. So, yeah, I think it is a fantastic story, and Debra, cricket is the precursor of baseball, except we run in a straight line between some sticks.

DEBRA: 5:30

You don't always understand what soccer versus football is, so, it is great, my next door neighbour played cricket, small all lek. I was impressed even if I don't know what it is, no.

NEIL: 5:49

In all seriousness, I think, sport changes people's perceptions and performance changes people's perceptions. So, the engagement that you got and the changing of people's attitudes towards you because you're able to do something from sport I think obviously is a catalyst and we've interviewed para athletes before as well and the impact that it has on their lives is genuinely transformative. But often they don't face the same level of challenge and stigma that someone with a facial disfigurement face. So, you know, you've been involved with Phyllida Smith and Face Equality International, How Can Other Organisations get engaged how can we take your message and what message do you want us to take from you out into the wider world about how we can address some of these prejudices and stigma?

AMIT: 7:11

It is more been bi‑inclusivity, we need to feel as if ‑ you can't judge a book by its cover, that's fundamentally what it comes down be it in the professional world or relationships, you can't judge a book by its cover. When someone with a visible difference is going into an interview, they cannot have unconscious bias about what that person can and cannot do. I've been a victim of this, people interviewed me and assumed certain things, assumed I can't talk. I've had people do sign language to me because they straightaway assumed this person is probably mute or deaf which isn't the case. So, it is allowing people who have a visible difference to let them embrace who they are, open up and talk to you, and you learn from them you absorb what they're talking about, you absorb what they're saying, and you give them that opportunity, that platform to actually prove themselves. That's what the message is and that's what I want to portray to the world.

DEBRA: 8:15

Amit you have a powerful story and I'm fascinated by the comment you made that when they realised that you were talented, it you all of a sudden became a real person, I'm putting those words now. The audience knows I am focused on identity and how are we digging into identity, and here you wrote this authentic just story about who you were and your experience and that really spoke to the world at a time when we were really taking a look at who we are, I hope everyone is really digging deep to see who you are as an individual. I also know that we sometimes as human beings get confused about inspiration and about, we accidentally shift is over at inspirational porn, oh isn't this so cute Amit ‑ that garbage ‑ sorry using this example. But, at the same time I think that what is powerful about your story, and we have a lot of powerful stories, and leaders talking about truly being included as a human being, it is all about really treating ourselves as humans, but I think understanding how we use our lived experiences to really change society's minds about what people are and are not capable of. And I know that when we had, we've talked about face equality and face ‑ those things about how society movies use people with scars to denote bad people for example, things like that. I just was wondering if you wanted to dig in a little deeper with me to talk about with everything that's happening right now in society, I mean we're just rethinking everything. Is there an opportunity to really rethink our identities and give this identity to children at a much younger age to help us understand the complexity of who we are as human beings but, I just think we're to the point where we need to go beyond inspiration to really digging into, what does it truly mean to be human and what are the values sorted with that?

AMIT: 10:34

I love that, Debra; I love what you said because it is this inspiration that you said oh, I feel so sorry for him or he's so cute it is that pity. And people don't want to pity. What is most important and fundamental I say this when I go to schools and talk to children is learning to accept yourself. We're so busy in trying to get validation acceptance from others, especially nowadays because we're creating content on‑line, on videos and Instagram photos, we're constantly waiting for how many likes we've got and comments we've got we need to stop that. We need to look at ourselves and validate ourselves first. I went to school a few months ago and I did a talk, and this young boy came over to me and took photographs with me and afterwards, I found out only yesterday I found his mother wrote an article in the local newspaper, he was a heart patient, so he had already had three surgeries up to the point I had spoken to him. He went home that day and said I was so inspired by this person that came and spoke, that I want to embrace my condition, I want to focus on my personality and he started swimming, he started running, he started joining football clubs and he is now waiting for a heart transplant but he says it is going to be OK, it is going to work out because somehow I planted that seed in him, if you start by accepting yourself the universe does the rest for you.

ANTONIO: 12:11

My daughter always had kids with disabilities in the class since a very early age. But that's not always the case. Sometimes in some schools that never happens. How do you feel that schools can do, teachers in collaboration with parents to create spaces in classrooms where kids are more open to understand the others, when sometimes the others with certain differences are not present in their world, in their bubble? What do you think that it needs to be done there?

AMIT: 12:52

It comes down to normalising disabilities, visible differences, conditions, and the only way you can do that is getting people who have lived experiences like myself and others to go to schools, to go to colleges, go to universities, stand and talk and say ‑ the way I look at it Antonio, if I had somebody come to my school when I was a young boy before I embraced my personality and started playing cricket and someone told me it is about self‑love, it is about you, you can make the difference, you have what it takes to make it happen, then I would have grown up with that belief and stability, so, we need to do more of this now, because if I had that when I was a young child it would have shaped me differently so. Now let's shape the younger generation differently, using our network, our expertise, and as Debra mentioned leaders going out and talk about the important subjects, let's make that change now.

ANTONIO: 13:52

We have talking about children, about you there's also people who might end up, who might have an accident, and this might affect them later in life. How, what are your views on that? How can people build that confidence in, when they are you know, young adults or sometimes an older person?

AMIT: 14:16

A lot of people ask me this question actually, especially now I'm doing social media videos about acceptance and confidence, people will message me saying how you are so confidence. I say to them it is about fundamentally loving yourself and accepting yourself, and they say well that's easier said than done, it is easy to say love yourself. I reply saying absolutely it is easier, but you have to work on yourself every single day. It is that 1%, 2% campaign. If I work on myself ‑ let's say somebody had an accident the nurse, you know, you have an accident you would have a burn and suddenly your life is turned upside down and you feel like that's it, there's nowhere for me to go from here. If you spend every single day spending 1%, 2% marginal gain working on yourself, what will happen is if that one year, two year, three years' time you will be a much stronger person the day the incident happened or the day you realised the incident has happened, it is having the belief, because beliefs lead to actions, actions lead to results. It is about instilling that belief in they feel that you know what, if you keep going, if you keep making those 1%, 2% marginal gains every day, you will get through it.

DEBRA: 15:36

I think that is such a good point you're making because that's something I have been trying to teach myself forever. I think that to truly love yourself it takes practice, and you have to practice and how do I love myself? I love myself when I screw something up really bad which I do all the time, I try to be gentle sometimes. It is like well, you know, I would talk to myself like I was a little kid, give myself a break. So, it does take practice, learning to love ourselves, but I agree with Amit there's nothing more important than trying to learn to love yourself. I think I finally have done it, finally! But it took a while.

AMIT: 16:16

It is a long process. I have days when where I'm back down, I used to be very envious of other people's faces. Especially going to weddings and going out, I don't know if any of you have been to an Indian wedding.

DEBRA: 16:35

I haven't but I would love to go to one, I'm seeking invitations.

AMIT: 16:41

Policeman buoyant, I dreaded going to weddings I knew everybody would be dressed up, everyone would be glamorous, the boys would be wearing nice glamorous clothes and no matter how much good clothes I would wear I would have felt I'm ugly and not liked and it is a different subjected but there's so much stigma in the Asian community about visible differences, no‑one believed I would get married. I had people telling me that my face oh don't worry why don't you put yourself in the parents' shoes, would you want your daughter to marry someone like you. It is absolutely disgusting the comment and they were saying this as if they were trying to consolidate me.

DEBRA: 17:23

Has your wife been congratulated you for marrying you, is she there too.

AMIT: 17:31

Everyone saying to me, yeah, your wife's done such a great job.

DEBRA: 17:34

She's a saint but she loves you.

AMIT: 17:37

I saw you for who you are and I married you, she said, I used to hide half my face when I talked to her, I used to show her this side of my face, one day I'm on a video call to her and she said Amit, if I marry you I'm not going to marry half of your face I will marry all of you, so stop showing half of your face.

DEBRA: 17:59

That tells you right there who she is, and she really loved you. I would say as a parent and woman who lost her husband a couple of years ago, I want anyone of my children who will get married to get married who loves themselves, knows the strength of themselves, will protect them, the things that matter to me, are so different now than what I thought I was supposed to care about. So, I think your wife is lucky to have a wonderful soul beside her like you. I want to throw a different question at you. We are big supporters on AXSChat of The Valuable 500, we love Caroline and Stefan and there's amazing people, The Valuable 500 and I don't know if you're familiar with them in that, OK, so, 500 corporations, have gotten together the CE O‑level and said yes, we'll include your community. Love it, love, love it, but one thing we talk about is we have to be discoverable, 75‑80%, of our community do not have visible disabilities, so, they have created something called the Generation Valuable which I don't know a lot about it, but I believe what they're doing is really focusing on leaders in our community to really show who we are. And I was just curious from your perspective, why is it so important for these corporation brands to really know who our community is, and then is it even possible to know who we are when we're such a gigantic global community?

AMIT: 19:35

I don't think it is that easy. It is a journey. We are very late to start this journey corporations are very late to start this journey and appreciate and understand it. And to be brutally honest with you, I think a lot of the companies still, it is a tick box activity. And that's what needs to change. It needs to change from a tick box activity to an activity that they're doing because they're seeing the value that is going to bring to the firm. Having a diverse workforce is going to bring various different ideas, various different fresh views, various different fresh ideas that can stimulate a company that can take a company from this level to this level and only when corporations and companies truly accept that and don't do it as a tick box is when we're going to see the true growth.

NEIL: 20:36

So, absolutely, fundamentally agree. Can we spend a bit more about Generation Valuable this is within the organisations that are doing stuff is to get the senior leaders to Mentor talent within their organisation so young people with disability to Mentor them to make sure that they can progress to the C suite. So, what it is doing is creating C suite leaders that actually activity have disabilities and at the same time really getting the leadership of these organisations to have those difficult conversations with their talented employees about what it means to be disabled in their organisation. So, it is a two‑way process and I think it is a really useful exercise. We're lucky enough that our CEO decided that he would be the Mentor so he's walking the talk on this and his mentees not holding back in terms what she's prepared to tell him.

DEBRA: 21:56

She's teaching the CEO.

NEIL: 21:58

Absolutely.

DEBRA: 21:59

She's in our community because she's amazing.

NEIL: 22:04

But, then on top of that I do think that there is a lot of marketing positioning from organisations about inclusivity that is if you scratch the surface, it doesn't go too deep and what we need to do is organisations, what we need to do as society is to actually really start embedding this in ways that we do business. So, ... And it should be, so, as a business, my day job I worked for a large business, and I think it is imperative that we start making money from doing those things and measuring those positive returns on the investment of inclusivity that you were mentioning, because they are real, but, quite often the metrics that are put out there are not very good because if you start with digging down into some of the figures that are quoted, quite often there's not a lot of science behind them. So, one of the things I'm really interested in is getting those really good quality metrics and some of the stuff that organisations like The Valuable 500 are doing are trying to embed reporting and metrics on disabilities, inclusion into corporate reporting in a meaningful way that then drives that change because it impacts the share value, it impacts all sorts of other things. So, there's multiple levers we can pull here that hopefully have a positive impact on the cultures of organisations on their productivity, their profitability, which then has that sort of ripple effect out in society as well. Because corporations, especially large ones have an undue influence on people's perceptions in society because whilst we don't employ the most people, actually T sincere MEs and micro‑business that employ the most people they don't on their own have the impact that am so far the big corporations do.

AMIT: 24:23

You're absolutely right about the point of two‑way street, at the moment people are uncomfortable at impressing their disabilities or even noting it down. So, the metric isn’t where they need to be even in the organisation I work for, we don't truly know how many people we have who are affected by disabilities and because a lot of people aren't yet comfortable to open up about it. So, I really like the point Neil made it be a two‑way street.

NEIL: 24:55

So, this is a real chance in a multinational where the laws are different in different places and we want metrics, we want to report on disability at the same time there are very different approaches and different cultures and different countries and we want people to feel that they're psychologically safe place to be able to identify as disabled, when there's almost two strands because the in many countries there's a sort of official recognition of disability, you go and get your disability badge if you like you become classified as disabled. You have the disability recognition and then counted in specific statistics, and there are certain benefits, but also, restrictions on what you can and can't do. So, often, not only do people fear the prejudice about talking about disability, and declaring a disability but they feel it may actually narrow down their prospects because they're legally not allowed to do certain things because state still has this partition charitable view that people are not capable. What they're having do is have a sort of please declare officially if you want to approach but also we want to have a sort of self‑ID and nonofficial recognition and celebration of disability in our culture so that we can do that cultural change, support people as they wish to be supported without constraining them but it is definitely something that is really challenging because we know for example that you know employees in Poland they're only allow today work a certain number of hours if they take on a, if they have a particular classification of disability. And as Antonio put in the chat there's no unified method to identify disability because people classify it differently in different places, so I think that the work of self‑ID is important and that's where Debra is really doing a lot with A Million Strong around identity.

DEBRA: 27:37

I appreciate you doing that thank you so much, but you know, but I will say this we really are stronger together, we're stronger together and we have so much to add. If we did nothing else, I realise this is ridiculous F we did nothing else for the disability community to take care of yourselves, anybody in the community or lived experience as parent, friend, alalia, we took care of ourselves, we invested, we bought, employed each other, everything would be, everything would change. But we a lot of people, somebody asked me one time what is your biggest problem? And I said biggest problem is you don't even know you're part of our community, if you know you don't want to be part of our community. Be proud of who you are, that's what your message is, be proud of your lived experiences, I am over a certain age, I have grey hair, so good let me put purple in it, don't you nudge me because I'm over a certain age or go ahead but I don't care. So, anyway Amit yes this is why we believe your work is so important, you go.

AMIT: 28:47

No, I absolutely love that. Before I was a shy insecure, lacking confident man and now I'm on this journey in the last three, four months of advocacy and talking on social media, now, I do a talk and I say this is me, take it or leave it.

DEBRA: 29:09

Right, there's a great song This Is Me

AMIT: 29:14

We need to own it. It starts with me. If I can accept who I am, then I can go and help others.

DEBRA: 29:23

Right, you don't know who you're talking, who your message is touching, you don't know that. You think that you put that OK I'm going to open up about who I am out there, the world explodes because it need it had. And I also have to say I think you are a very handsome man, I really do think that, so I this your wife is lucky, but I don't ‑ I also judge people on things like that based on what they're putting out in the world. Who are you? And I see you as a beautiful amazing and handsome man. So, I just think we sort of have to yeah, we really ‑ I think the world wants to hear this now Amit. I think that's why your world has exploded so thank you.

AMIT: 30:09

Talking about people who you touch. When I started making TikTok videos, I they ever nought I would make TikTok videos, but I thought it was people dancing and mimicking other things, when I first made that video two weeks into it, this wonderful girl from South Africa messaged me on direct message saying, Amit I have a same condition as you I really enjoyed watching your videos. My tumour's grown on my Thais and I can never go swimming whenever I'm on holiday I can't go swimming, I ask why, she said if I wear a bikini and go swimming, people stare me and judge me, and friends might not like me. I had a brief conversation, do you want friends around you who will leave you just because you've a few tumours on your body or spots, she said thank you that was very nice. I thought that was the end of it, two weeks after, she messaged me back and sent me a picture of her Facebook status, it was her on holiday wearing a bikini saying I owned it and I put on and status that I have neurofibromatosis. Maybe I was starting line for her or maybe it was already there, but those messages are resonating with people and making people move and creating impact. I want to be thankful forefeel to give me this platform today to talk, because hopefully people are listening will take inspiration and take some lessons out of what I've con, I'm no motivational speaker I haven't studied public speaking or studied confidence, all I do is talk about my lived experience and try to be my authentic self‑in the aim to help and support and inspire people.

NEIL: 31:54

So, I think that inspiration is quite a loaded word amongst the disability community. And there's this great talk, TED talk by Stella Young called Inspiration, all about inspiration porn, but we want to insurance and inspire people to action, and so, yes, you're inspirational but you are a positive role model so you're exhibiting role model may have your and we need to highlight role models like yourself so that other people can gain that confidence. So, I mean, thank you for joining us today.

ANTONIO: 32:40

It is important to notice Amit is doing work on advocacy but when you show that work, and he is in a sales meeting with customers, that's an important as advocacy, and it is very important that other organisations don't hide their people with disabilities in other places and have them front of the organisations and because I feel that that's ‑ I just want to leave that note.

DEBRA: 33:09

Agree. That's what we expect society now too.

AMIT: 33:13

Society traders is a big one on this, restaurants, bars, I still feel there's reluctancy in employing people who look a certain way, all it unconscious bias, call it bias straight out, I think it is there, and that needs to change. It goes back to what Phyllida Smith said with media and firms portraying people with visible difference in a certain way which is a ripple effect on society and everything, we're not born fearing people with visible differences, we're not born thinking that someone what has a disability or disfigurement or someone in a wheelchair is incapable of doing something, those are planted in our head by society and social media and films, it is a big nest I think, there's many draws to it unlock, many things to look at but together we're stronger, we can make mountains move, and if we can be the start of something, that's enough I think.

DEBRA: 34:17

I agree,

NEIL: 34:19

Excellent. It has been a great conversation, unfortunately we need to wrap it up and thank our sponsors, Amazon and MyClearText for keeping us captioned, so, Amit, look forward to continuing the discussion on social media, it has been a real pleasure today. Thank you.

AMIT: 34:37

It has been a pleasure to be here, thank you so much.