Support line: 0300 012 0275Donate

Podcast transcript: Tulsi, Shankar and Prisha on having a visible difference in the South Asian community

Please find a full audio transcription of “Tulsi, Shankar and Prisha on having a visible difference in the South Asian community” below.

Moderator questions in bold, respondents in regular text.

Unable to decipher = ( inaudible + timestamp ), Phonetic spelling ( ph + timestamp ), Missed word = ( mw + timestamp ), Talking over each other = ( talking over each other + timestamp )

Introduction:

Welcome to Changing Faces, Voices of Visible Difference, the podcast where we talk about having a scar, mark or condition that affects our appearance.

Tulsi:

Hi, welcome to our podcast, I’m Tulsi, an ambassador for Changing Faces, and I’m joined by Shankar and Prisha. Today, we are breaking down the myths of having a visible difference in the South Asian community. As a community, we are rich in culture and a lot of fun and colour. However, having a visible difference in a South Asian community does bring about its own challenges. So, let me introduce you to Shankar. Hi Shankar.

Shankar:

Hey Tulsi, loving the energy. Hey everyone. For those that don’t know, I’m Shankar and my visible difference is vitiligo and for those that don’t know, vitiligo is a skin condition that affects the pigment on the skin, essentially meaning that there’s no melanin to colour it, which causes white patches to appear.

Tulsi:

Thank you so much. Then, I’m going to introduce you to Prisha. Hi Prisha.

Prisha:

Hey. Thank you so much for the intro and, yes, it’s lovely to be here. I can’t wait to share my experiences. So, I have a birthmark, also known as a port wine stain, which is part of my bigger chronic condition called Sturge-Weber syndrome which affects the brain, the eyes and the face.

Tulsi:

Thank you so much. So, yes, as we said, you know, like, we’ve come together. You know, we come from a South Asian community. Of course our experiences are very different, however, I’m guessing as today’s conversation goes, I’m sure we’re going to find quite a lot of similarities. I mean, what were your experiences growing up? Like, Shankar, how was it for you growing up having vitiligo?

Shankar:

I look back now and it’s really weird actually. So, at the time I thought I’d say growing up with vitiligo, I led, you know, a relatively normal life. Obviously having vitiligo, it was very stressful and my parents and, I guess, my extended family were quite concerned for me. You know, you gel that in with our Asian culture and all of a sudden, you find yourself in, like, another world. I say, like, there are certainly highlights within our culture that I’ve tried to, sort of, you know, at the time get rid of my vitiligo as such and trying crazy things like drinking water out of a copper glass or taking, like, white tablets to try and, you know, get rid of my vitiligo which were from India. So, all of this I thought was normal up until, I guess, as I got older and I look back at those past times and thought, “Hang on a second, obviously none of that worked anyway, but I wish I had the strength to, sort of, embrace it and not let, I guess, my culture overtake my way of thinking.”

Tulsi:

I mean, it’s quite surreal hearing that because, you know, again, growing up, I mean, I’ve got burns and growing up it was like, “Have you tried this, have you tried that?” Like, in an Asian community, I’m sure-, I don’t know if you both can relate, but there’s always some sort of remedy that ( inaudible 03.14 ) be like, “Try this and drink this,” or, “Use this cream, it’s going to go away,” like it’s some magic solution. You know, it makes me laugh actually now but obviously at that time it was really traumatic. I mean, Prisha, did you experience something like that too?

Prisha:

Yes, it did make me giggle when you were talking about, like, because I did remember when I was younger. So, you know we have, like, turmeric, I often get people say, “Oh, that would really help lighten your birthmark or reduce it,” and as a kid, these things that when people tell you, I feel like they do sink in and it’s something you will remember for the rest of your life. So, words are so important. In terms of, kind of, growing up in the South Asian community, when I was younger as well I was quite upset and I did feel left out when, you know, a lot of time they would force me or, kind of, make me wear makeup as I didn’t want to for an Indian or for a cousin’s wedding when I didn’t really understand why and obviously now I’m a lot more confident with it, but it was something that I always struggled with because I felt like I had to cover it up to make sure that I looked a certain way in our community.

Tulsi:

Yes. I totally relate to that, because I used to wear make up, and looking back I did look like a clown because I didn’t know how to wear it, it’s just I slapped it on to cover up. But we’re so conditioned to cover things up, be it, like, a visible difference or even mental health, everything is a cover-up so that no one else talks about it. But the irony is they do talk about it. They do make us feel isolated in a situation. And the thing is, no one sits down to ask us how we are feeling or even what has happened to us or, you know, what’s going on. I mean, it’s amazing to hear that you’re both in a different place now, you’re so confident. I mean, I love your social media profile and all the things that you guys are doing, but that doesn’t happen overnight as we know, right, like, it’s a real struggle. Was there support along the way or do you feel that that was lacking? And I’m talking more in terms of our community. I didn’t personally. So, I mean, how was it for both of you?

Prisha:

Yes. Me personally, I felt that there wasn’t much support either. So, I came across, luckily, Changing Faces when I was sixteen, seventeen, so about five years ago, hopefully, about five years ago, my maths isn’t the best. And I remember being able to write a blog for them, and I just felt like there was no one in the community at that time talking about it. And being in high school at that time, I was in a school where there were a lot of Asians and there just wasn’t anyone talking about it and it was, kind of, like, a taboo subject. So, I just felt like I had no one that I could relate to or talk about it, which is why I wanted to start raising awareness on social media to help anyone with a visible difference, especially in our community, feel like they don’t have to be alone.

Tulsi:

Yes. I mean, I resonate with that. That’s why it makes me smile knowing, like, obviously you’re a lot younger than I am and you’re doing this now. So, you know, the work that I do, like, especially in the media aspect is for my younger 10-year-old self, because there wasn’t anyone out there that looked like her or she could adhere to or, like, be inspired to, sorry. Like, it’s amazing you’re doing this now, Prisha, I mean, so young, and hats off to you for putting yourself out there. This is something that’s been really pressing on my mind because growing up, you know, I was 10 you know, for those who don’t know, I was involved in a plane crash, I lost my family, in a split second my identity changed. I looked different, right. Now, in hospital recovering, I’m in and out of sedation, and one of the first conversations I hear is, “Who’s going to marry her?” At the age of 10, I mean, come on.

Shankar:

That is-, yes.

Tulsi:

( talking over each other 07.04 ) but I’m sure you guys can relate somewhere along the line.

Prisha:

100%.

Tulsi:

Where, “Who’s going to marry her?” Or, “Who’s going to be with her?” Or, “Will anyone look at her? Is she just going to be single for the rest of her-, can she even have children?” Like, these are the things that I got. Now, I mean, I’m laughing about it because now it is funny but obviously at the time it wasn’t. Now, Shankar have you experienced this? And I’ll ask you as well Prisha. But Shankar, did you experience this as well?

Shankar:

I look back at my past when you mention things like that and I feel like I’ve almost suppressed those bad times because sometimes they were really bad and to relate in different ways. It would be, like, you know, at weddings or parties when you’re around a lot of family or extended family who maybe you don’t-, or I don’t know that well but of course, my parents or grandparents do. They’d look at you and say, “Oh, no, what’s wrong? What’s wrong?” Or, “How did that happen?” And, you know, like, “Oh no,” you know, “We need to get that sorted out.” It was something that straight away there’s a negative, sort of, aspect on you. You carry that, you carry that for such a long time. Like you said, it’s something that you’ll never forget because you shape around that person of who-, I’ve shaken off now, but this negative perception of what others have given you, so then you start to believe it yourself.

Tulsi:

Yes. Absolutely. What about for you Prisha? Was that something similar?

Prisha:

Yes. I relate to you both because I feel like when I was younger, and, you know, I come from a very big Asian family where I honestly, and this is no joke, I have, like, 60, 70 cousins who are a lot older than myself and seeing them, kind of, get married off and obviously there’s always going to be conversation on who am I going to marry and it’s always at the back of my mind as well individually where I worry that because of how I know the community is and how I’ve been surrounded by it, will anyone want to marry me? Will I be single for the rest of my life? It’s all these thoughts that pop up in my head, that’s why they feel like sometimes I do need to cover it up to show who I am, whether I go out with someone just so they don’t see my birthmark, which does hurt because I’m a bit, like, regardless, they shouldn’t like me because of my looks, it should be more about my personality and, kind of, make me feel like I am comfortable with them as well.

Tulsi:

Absolutely. We all know now, like, it is about the internal beauty, you know, it’s not just the external beauty as well. You know, so I think it’s vital that we keep talking about this with our peers because sometimes when I talk to my friends and cousins, and, like you Prisha, I come from a big family too, because they don’t see my visible difference, they don’t see there’s an issue. For them, because I’m the life and soul of a party, I’m always out and doing things, so they just presume me meeting someone is natural, but they don’t realise internally how low I did feel at the time because they’ve gone past looking at my visible difference, which is great, you know, which is great. But it isn’t when they can’t understand me. We are progressing as a community, of course, we are, you know, ( timestamp 00:10:00 ) and I see a lot more things out there on mental health now. I see a lot more groups set up with people helping each other, which is great. But have you seen any changes in people’s attitudes towards somebody with a visible difference? So, i.e. like, if you go to an event now, I mean, obviously post-lockdown obviously events are opening up, but have you noticed how things have changed in how people look at you?

Prisha:

Yes. I feel like, to be completely honest, I don’t feel like the views have still changed, and that’s why I think it’s so great the fact that the three of us and other campaigners are making that change because when I look at the fact that my cousin’s wedding is coming up later this year, I’m like, ‘Do I want to wear makeup at all the events? Especially when it’s going to be the summer where it’s, like, do I want to? I just, kind of, want to wear natural. I feel like with all the work that social media and that we’re all doing is super valid and super great and the more people who are hearing our stories, hearing our struggles. But also, kind of, being curious and understanding where we’re coming from, hopefully over time it will change, but I feel like there is a lot of work that needs to be done.

Tulsi:

Yes. I hear you. I mean, how about for you Shankar? Is that something similar for you?

Shankar:

Yes, I’d say, so, you know, talk about weddings and parties, I feel people in our generation, and I say that I don’t want to cap an age on it, let’s say, parents and above will have a belief, and then under, like, our generation, are now more accustomed to differences and embracing, you know, who we are more. And I say that actually, it comes down to, like, Prisha’s point, it is down to us. We’ve all done such an excellent job on, you know, social media and stories in the news about our acceptance of our differences with what they are. It goes afar. We are doing what we’re doing now and to concentrate on ourselves and then now this new generation that’s coming through where appearance now matters more than ever with the likes of, like, Love Island and other things that are on TV, that we still stand strong and continue to do what we do to then put out that, you know, positive image and representation of what beauty actually is.

Tulsi:

Yes. I love that. You know, on that point, Shankar, that reminds me, when I was growing up, obviously, I’m a lot older than both of you, growing up, you know, South Asian community, we have Bollywood, right? So, Bollywood, you know, the big famous film industry, all this lovely glitz, and glam.

Shankar:

Love Bollywood.

Tulsi:

Everything’s a song and dance. We are lucky we come from a culture where there’s a lot of colourfulness, jubilance, celebrate everything, which is lovely. Now, for me, growing up, I was compared to Bollywood actresses. Now in reality, even Bollywood actresses don’t look like Bollywood actresses. You know, behind the make-up and the hair, there’s just a person, right, who also probably had the same level of insecurities I would be having, same kind of conversations. However, like, growing up everything was about image. You have this representation, you must wear this, don’t look like that, wear this, don’t wear that, do this, don’t-, you know, it was a very conformative type of way. I struggled because here I was trying to fit in, yet when I was trying to fit in, I still didn’t fit in, then I hated myself more because I didn’t fit in and no one around me was helping me to fit in because they kept pointing out I was different. Obviously now where I am now, I love being different, I wouldn’t want to fit in, I’m not designed to fit in because I’m too flamboyant to be fitting in. However, like, did you have these types of pressures as well? Like, very image-related. I mean, from your South Asian peers more than your Western peers and stuff?

Prisha:

Yes, totally relatable because I’ve grown up loving and watching Bollywood. Honestly, it’s one of my favourite things to, like, go to the cinema to watch with my family and, from a young age, seeing all of that, all I ever wanted to be was to feel like anyone with a visible difference could be in a movie in a Bollywood film or could be featured without a question of a doubt. And, like, when I was younger, there was one movie, it’s, like, a movie where her daughter’s got a chronic condition in India and she has to actually go to Great Ormond Street, to travel from India to London and it was just talking about that, that was the first film in about eighteen, nineteen years of my life where I could really relate to something. Of, kind of, having the treatment and being in hospital and I felt really resonated but I was also, like, things like that should be talked about more in Bollywood films, about visible differences and even possibly showing the positive spin of it, of how well people can still do with their visible difference, if that makes sense. And, like, I do wish that there would be more people featured in the Asian community with visible differences.

Tulsi:

I mean, I’m smiling here because I’ve been lucky enough to be Audrey Hepburn in the recent ( talking over each other 14.57 ) campaign, so dreams come true. So, again, like, having a visible difference, I didn’t know I could be a film star, so to speak, and be almost similar to my style icon, Audrey Hepburn. So, the fact it is doable, we just need to have a bit more conversations about positive representation in all, you know, genres of film and, be it Hollywood, Bollywood, wherever. So, I think that’s really good and it’s nice that a film came out where you resonated. It’s true, we do need to have a lot more conversations around this and we need to see a lot more films that have some sort of representation where, ‘Somebody looks like us,’ you know? So, I think, yes, it’s great. What I want to ask you both, is any, kind of, advice from someone in our community who is seeking guidance or how to have conversations with somebody with a visible difference. Are there any guides and tips from both of you? Shankar, I’ll ask you.

Shankar:

Absolutely, I think it’s split into, like, two parts, if you like. Because I feel like one piece of advice is hard for it to fit everyone, so I guess my first bit of advice is really to parents, no matter what the age. If your child, you know, has a visible difference, try your best not to mirror their fear in any way. Because, as a child, you pick up on these things and I certainly did as a teenager. But instead, be very supportive and, especially if the child’s young, like, use their imagination to their benefit. So, you know, their difference could be a magic power or a symbol of importance. Of course, even in our culture, a blessing from God rather than a curse, you know. And then, I guess, with that in mind, like, the advice to the world is ignore the noise as best you can. Like, our culture can be so heavy at times but I’d say that we’re also the advocates to rewrite that as we please. And we are, it is very, very slow, especially when you mentioned Bollywood there, I think I remember a movie called Main Hoon Na and it, yes, it’s one of my favourites but it had someone with a scar. And of course, he was the baddie, but it’s great to hopefully, you know, as we keep talking about it, see a shift in that. And I’d say to those people, “Don’t give up.” You know, ‘Keep following the positive social media pages and take it a day at a time. Because we are really creating that new future together.’ And it will be, you know, better than ever, as cliché as that may sound.

Tulsi:

Oh, thank you, Shankar. I mean, for you, Prisha, I mean, we’ve talked about visible difference, obviously that’s us on the outside. Now, we also have invisible differences, which is our mental health. I’ve suffered anxiety, depression, which I’m sure you both can relate to. Do you feel, Prisha, like we could be doing a lot more, first and foremost, but what could we be doing to help somebody’s mental health in this situation?

Prisha:

Yes, great question. And I feel like, so with mental health, so I’ve suffered with anxiety quite a lot in my life for different reasons. Some being, kind of, my visible difference, some being with my, like, treatment and missing out on school and I think all these things just add up. I think the thing that’s helped me over the last three, four years is definitely therapy. I don’t know about you guys, but in the Asian community, therapy is quite a taboo subject and it’s definitely helped me and I think it should be more of an open discussion in our community about the importance of therapy and how it can help people to talk about it with a therapist and how to, maybe, feel more comfortable and maybe feel like we can have those conversations with other people.

Tulsi:

Oh, I love that. I think therapy is something, you know, we should all be doing in some respect, because whatever we are dealing with, you know, we just need to be able to share and offload without judgment in a safe space. So, from hearing both of you and just from my own experiences, we need to start breaking down the stigma. The stigma of reaching out for help, this isn’t just going to go away, we do need to talk about it, we need to be seen, we need to be heard. Fundamentally, we are all here to be our true selves. You know, and we can only be that if we’ve got good people around us, we’ve got a lot more positivity around us and we have positive conversations.

Prisha:

Yes, so I do feel like, in terms of growing up, and I don’t know if you both relate to this, but in the Asian community, I feel like from a very young age, we’ve been, kind of-, learned to just listen to everyone, to not have our opinion, right? Like, I feel like decisions aren’t made for us, and when people, kind of, have that opinion, “Oh, you should wear make-up,” for me, that made me feel like I had to wear it because I was so-, I felt like I had to listen to them. I feel like now I’m getting to that age where I’ve, like, learned to become more confident. But especially with younger kids who have visible differences, I’d always, like, love to tell them, like, “Do what feels right for you,” and there have been so many instances in my life where I’ve listened to people, I haven’t gone with my gut instinct on it’s OK to not wear ( timestamp 00:20:00 ) make-up. And I’ve just let that, kind of, all the family or, like, any members of our family, kind of, overpower me in that sense and then I felt like I had to cover it up for that particular event. Yes, it just felt like that was something that affected me.

Tulsi:

Yes, I really resonate with that because decisions were always made for me and, like you, Prisha, you know, wearing make-up was a must, as if you had to wear it. It’s like, I don’t want to cover up, but yes, thank you so much. I mean, how about for you, Shankar?

Shankar:

Yes, it’s interesting. Especially Prisha, hearing your experience, and Tulsi, of course, yours as well. But an observation is that I do feel that women have it tougher than men within our community. So, you mentioned there, for example, before about getting married or, you know, having to wear make-up, like, things like that. There is a pressure for guys but I feel that there’s more pressure for girls, for that matter. I think it’s obviously completely wrong, I don’t condone it in any way and it’s something I’ve definitely noticed. Because you just have to watch, like, the Bollywood movies again and, you know, you see women all, like, dressed up in their sarees, all looking very, very pretty in their own way. And so, for young girls in that sense, as well, it must be very difficult to look at that. Especially if you have a visible difference, thinking, “Oh, can I be that type of person when I grow up?” I’m sure you asked that you know, you’d be asking that question to yourselves. Putting a big circle around that and having that as a focus, as well, I guess it’s a call-out to the community. You know, we know that there are issues there for guys and for girls but especially for women, what can we do to really break that stigma down and highlight it, as well as remediate it and fix it into something more positive?

Tulsi:

Wow, that’s amazing. Actually, you know, that’s made me think it’s so true because, for me, I don’t see the difference between, you know, male and female in that respect, but in a community aspect, women do get it a lot tougher. Men would get it but it would be, sort of, in a bravado laugh-it-off manner. But for women, it’ll be a lot more-, you know, it’d stick a lot more. Of course, I think, Prisha, you said earlier on about words. You know, certain words just stick and, like, for me, the word ugly, I adopted it for so long. Even though I knew what it meant, it just felt that that’s what I was for such a long time. It’s only in my recent years that that word that doesn’t mean anything to me, it’s just a word. What I want to ask you both is was there someone that supported you growing up? You know, like, for me, my auntie, when I used to go out, she used to stand up for me and she’d be like, “What are you looking at?” At somebody, or, “Why are you staring at her?” And, you know, obviously they’d get a bit protective but that, kind of, gave me courage as well. Was there somebody that really helped you, you know, growing up and stood by you and just made you feel like you rather than your visible difference?

Shankar:

Yes, absolutely, so there was a particular person. First of all, I’d say, obviously I’d say close friends and family, for sure. But my chandamama ( ph 23.08 ), he was and still is someone I look up to. He really got me to believe in myself and see that, you know, what other people say is nonsense. Even when I, you know, wore make-up for some time to cover my vitiligo, and then I stopped wearing it. I think I was quite negative towards my past self and my uncle, he would say to me, he’d say, “Shankar, no, no, you took the right steps to become who you are today, so wearing make-up was a part of your journey,” and he said that to me when I was about twenty. And those sort of words stuck with me ever since. And it changed my perception so, like, even now, in that sense, if I see someone wearing make-up with their visible difference as I once did, I feel like I’m more supportive and understanding about the journey that they’re on and what’s to come, as well. If there’s one thing, you know, you take on for yourself is you’re like, “Right, I want to have a mission to also replicate what my chandamama did for me to other people as well.”

Tulsi:

Amazing, and for those of you who don’t know what mama means, mama is our maternal uncle, so mum’s brother. So often, we would use, like, words like masimama ( ph 24.15 ), these are, kind of, words that we’re all familiar with. So if one of us mention that, just know it means auntie and uncle. Prisha, I mean, how about for yourself?

Prisha:

Yes, so similar to Shankar, I am very grateful for, like, my mum and my dad and my family in that sense, where, growing up, they just treated me like everyone else in a nice way, but also understood when I don’t feel confident and when I feel like, “Oh, I do need that extra time to get away because I do decide to wear make-up,” or when, most of the time, I feel like I prefer not wearing it. But actually, one of my closest best friends in the Asian community called Nupur ( ph 24.52 ) who, we’ve been friends now for about three, four years. But basically, like an older sister to me, and whenever we go out and I always have these random moments where I’m not confident, she’ll just, kind of, like, tell me off in a good way. Being like, “Prisha, don’t worry, like, (1) you look beautiful with and without make-up, but two, like, own it, and you raise awareness.” Obviously, sometimes with us, when we’re raising awareness and we’re trying to be confident, we all have down days, right? I think, like, being able to talk to her and my best friend about how I’m feeling and I feel like I can be myself with her. I often feel like she just gives me the boost of confidence and, like, always shares tips and it just makes me feel like me without needing make-up or whether or not I choose to or not, which I really am grateful for.

Tulsi:

Oh, I love this. You know, I’m actually just smiling because, you know what? Like, for both of you, because I know, you know, Shankar, you’ve worn make-up as well, and Prisha, you know what’s amazing when we don’t wear make-up? We save so much time. Just more time to look in the mirror and go, “I am amazing, I am beautiful,” and you know what’s beautiful? When you come back from an outing, you don’t have to spend hours taking it off. I mean, how amazing is that, as well?

Prisha:

I love it.

Tulsi:

Yes, it’s brilliant. But what’s nice is, like, from hearing from both of you is surrounding yourself with good, positive people is what is so important. And they are out there, you know, they could be a friend, they could be a family, they could even be a work colleague, you know. But it’s surrounding yourself with more positive people who uplift you, even on moments where we have a little bit of a wobble, and we all do, you know, I certainly do, who just uplift you, encourage you and just remind you how incredible you are. So, for all our listeners, do surround yourself with really good people who uplift you, who encourage you and just love you for you. So, on that note, thank you so much for both of you, amazing conversations, thank you so much.

Shankar:

Thank you so much, Tulsi. Thanks, Prisha.

Prisha:

Yes, thank you both. I had a really-, I really enjoyed this conversation, so thank you.

Conclusion:

You have been listening to the Voices of Visible Difference Podcast from the charity Changing Faces. If you would like to get in touch, share your thoughts or find out more, you can contact us via the Changing Faces website or follow us on Facebook, Instagram or Twitter.