Shani Dhanda

SD: I wanted to go away for uni first, and my parents were like, no way. They were of the view that if you were a young South Asian girl, it wasn’t the done thing to go away to uni, because they believed that you go off the rails, whatever that means. And because I hadn't been a baptized Sikh, this all played into it even more. And also, my...they never let my sister go away to uni. And like, we call her the golden child. So, I knew if they never let her go, they were never going to let me go. So, I got a place at my local uni, which is the Uni of Wolverhampton, and I studied event management. But not only did I graduate with my BA Honours in Event and Venue Management, I also spent those three years doing free work experience. Because as a disabled person, and as a South Asian person, and as a woman, you quickly learn you have to overcompensate. But for me, it was times three. And I thought, it's not enough for me to leave uni with just my degree. What's going to set me apart from everybody else that's graduating that year with the same degree as me? Why would someone choose to hire me over them? So I thought, oh, if I've got three years of work experience, I'll be way more, you know, ready to hit the ground running. My plan worked, I'm happy to say. I was one of the first in my class to get a job after I'd graduated. And I worked for the Royal Institute of British Architects as an event and programme manager. And yeah, I spent ten years in events, and I worked at the RIBA for five and a half years. And then I moved to some event agencies. So, I worked in-house, I worked in agency, and I did freelance events as well. Did lot of charity events and helped raise over £400,000 for various charities. And I learned a lot. Like, I learned that even though I chose to enter the career of events on a whim, actually, it was really suited to my skill set, or my skill set was really suited to that career. Because, you know, I'm 3’10”, I'm the height of a 4-year-old, I have to think outside of the box every single day, figuring out how to reach my kitchen cupboards is the least of my worries. But when you think about the skill set you need in terms of events and project management, it was so aligned. You need to be creative, you need to have lots of different ideas and approaches, you need to know what to do in a crisis. Well, having your bones randomly break without any notice, that sets you up well for that. You need to manage people, manage things and processes. You need to be able to plan meticulously. Again, as a disabled person, that's all you ever do. So that's what I learnt. And I learnt that when...it was the day before of an awards event, that was like one of my biggest annual events that I used to organize at RIBA, the regional awards in the West Midlands. And the venue phoned me to say that the kitchen had flooded, and they could no longer host us. And then I quickly changed the venue, and got all the comms out, you know, about the venue had changed. And it wasn't until my manager that said, ‘You dealt with that so amazingly. Like, you didn't worry, you didn't, you know, get flustered, you just got the call and you were like, right, okay, and you found a new venue and it was all fine, and you saved the day.’ And I...then I sat and I thought, yeah, you're right, it's like if it was anyone else, it like they'd have made such a big deal about it, or they would have found it perhaps difficult, or...and it's like, you didn't. And I was like, yeah. And then I realized that's probably why. So, it took that for me to realize. But also, I really loved that I got to challenge people's perceptions just by doing a job that I was good at and I really loved. Because when I was doing freelance events, I got to work with some really cool high-profile people, celebrities, I got to work in really prestigious venues. And I did some events with some boxers like Anthony Joshua, Tyson Fury. And the likes of them were not expecting for me, a South Asian disabled woman, to be the person that was running, you know, their whole event, everything that they needed, their entourage, their needs, the whole show, all the guests. They didn't expect me, or someone that looked like me, to be doing that. So I love that I got to challenge people's perceptions as well.

MP: And when you say they didn't expect you or someone who looked like you to be doing that, do you have any specific examples of what might make you think that?

SD: Yeah, the look on their face when I'd introduced myself as the event manager of the show. You know, you pick these things up. I'm very good at reading people's body language and reading people's initial reactions when they meet me or how people would...will behave towards me. You know, sometimes people speak very loudly to me as if I'm deaf, or speak very slowly to me as if I might have trouble understanding what they're saying. And then they get into a conversation with me, and they realize it's okay, you can just talk at a normal pace and volume. You know, you get all sorts of experiences. So yeah, you pick these things up, yeah.

MP: And do you think you've learned to pick them up because of your positionality as a South Asian woman with a health condition?

SD: For sure, yeah.

SD: People harass me, they will take, yeah, videos of me. So, I've also had to...yeah, I've had it a lot. It happens mainly when I'm on my own. But now I confront those people, and they don't expect me to. And then they just deny it. But you know when you know. And then I say, 'Well, show me the last picture that you took then.' And when they never do, it's a bit obvious.

MP: Can you give me any specific examples of this sort of behaviour?

SD: Yeah. So, one...oh, actually, it kept happening a lot. When I...on the odd occasion I did go out in lockdown, and it would only be to hospital or medical appointments. So, I was going to the opticians. And it was like a one-minute walk from where I had parked my car to the door of the optician. And this young man was walking in front of me, but he was on Snapchat and the camera...I could see myself on his phone. And I thought, why is this happening? Like, the one day I've come out in months and I...it's a one-minute walk, and I...you know, why am I being harassed? And then I said to this guy, 'What are you doing?' And he's like, 'What? What?' You know, completely denying it. I could literally see myself on your camera. You know, you’re pointing it at me. Completely denying it. And then they just shout at you. It's really horrible. Like, no one ever admits it and says sorry, which is just further insulting maybe.

MP: So, that's kind of discrimination around your health condition? Or maybe it is also around ethnicity?

SD: Exactly. You know there's actually a hierarchy in how people troll me. So, because I'm also a broadcaster, you just have to get used to the fact that people are going to have an opinion, you know, on what you're going to say on TV or radio. And that's part and parcel. And if I couldn't handle that, then I shouldn't be doing that job. But it's just part and parcel of the society that we live in, unfortunately. And what I have noticed, though, that when I get trolled, there's a hierarchy in how people troll me. So first they'll talk about my disability, then my ethnicity, and then if they get round to it, me being a woman. But let's say I was a white, non-disabled woman, they'd only talk about...they'd only troll me for being a woman.

MP: How does that feel?

SD: Feels unfair. I want to be trolled equitably. No, I'm joking. It feels like it's never-ending. And what I've noticed more recently is how people say, well, you should be grateful you're born in this country. They always remind me of my place.

SD: It was a challenging few years. So, I never saw anything good about saying that I was a disabled person. And I hadn't learnt about the social model of disability at that point, because that, for me, really changed things. And I think it helped me become more confident as well. It really helped me accept my body image. It really helped to increase my self-worth, and yeah, me...my value as a person. Because also on the flipside of all this is, taking out the disability aspect, as a South Asian girl and woman, marriage is a big thing. And even from a young age, I've noticed people talk about marriage. It could be in a really flippant way. But like, I've never had that. Like, people have never done that with me. And I'm nearly 40 now, and I must be one of very few South Asian women that have never been like hassled to get married. And I know that is because I have a disability. And there's pros and cons to it, but the reason that it annoys me is because I was brought up being told there's nothing that I can't do, you know, you're just like everybody else, but then on a thing like marriage, which is unfortunately one of the biggest milestones of success for people in the South Asian community, I'm totally excluded from that, or even conversations about that. So...but then on the other hand, I'm glad, because I don't want to be hassled about it. And, you know, I'm not expecting my parents to find an arranged marriage for me, I wouldn't want that. But to also then just be completely ignored on the topic just feels a bit not great either. So...

MP: Do you mean, say, for example, like in family circles, you can have jokes about, oh, when are you going to get married? And...

SD: Yeah.

MP: Do you like that boy? Or I found a boy. That sort of thing?

SD: Yeah, that thing. And I remember like I must have been around perhaps the age of about 18, so at this point my oldest sister would have been married. And my younger brother, he's six years younger than me. So, my oldest sister got married, and then they just...my...we were in like a family setting and then they just started to talk about my younger brother's wedding. And I was like, ‘Oh, what about me?’ And the whole room fell silent. And then they're like, ‘Oh yeah.’ And then they're like trying to make jokes about it, but I was just like, hmm. You know, that silence said everything that I needed to know. And I guess it confirmed what I already knew. But I guess people perhaps didn't even realize that that was something that they were doing. But...and, you know, I guess it's that people don’t want to offend or upset me. But like, completely ignoring the issue also does that. And also like the burden shouldn't be always on me to have to talk about it either. So, yeah.

MP: Do you see marriage in...as part of your life?

SD: I think if I had met someone then, yeah. But I didn't, and I haven't, so no. But I also think that I never really allowed myself to let that be like the typical measure of success because I knew that that potentially would be something that would be perhaps more difficult for me. Because disability faces an even further sense of stigma. So, disabled people aren't viewed as like, I guess, good marriage material. So, in a way, I'm glad that I didn't make that the be-all and end-all, because I have some friends that they did, they're not disabled, and because that's their only thing that they've ever wanted to achieve in life, and they haven't, it's been a real source of...like, yeah, it's been hard for them.

SD: I remember like when I was in my sort of late teens, becoming a young woman, I felt moments of like being really infantilized. Because disability faces an even further sense of stigma in some communities. And in the Sikh community, it does, sadly. And like, on the whole, like I remember having a really happy childhood, but there were certain things...oh, my belly’s rumbling. On the whole, I remember like certain things, I have like core memories of things, like people saying that, oh, you must have done something bad in your past life, that's why you were born with this condition. And now, when I think back at that time, I just think that's such an awful thing to say to a young child. I must have been at the age of about 6 or 7, and I remember feeling guilty. And I was like, I wonder what I did? Was I a murderer? Was I this? Was I that? Would I have done this? I was trying to think what could I have done that was so bad that meant that I was born with this condition. And I just think no child should ever have been made to feel like that, should ever be told anything like that. And I think, you know, I'm not here to tell anyone what they need to believe or how they should interpret religious texts or teachings. But I'm really glad now that, you know, we...in the South Asian community, I'm hearing parents say, actually, no, I don't see it like that, I see it that this is my seva. So seva means selfless service. I love the fact now I'm hearing parents redefine it to say, this is my seva, if this is what...this...if this is what was meant to be, then this is cool, and this is my child, and they didn't do something bad in their past life. So, I'm really glad that I'm hearing that now, instead of the sort of well peddled reason that, oh, you must have done something bad in your past life. I feel like it's just so negative for everybody. And I guess I should say that when I was born, my mum like faced some really awful comments from family and friends. And I was so upset when I...when she told me this. And I only really learned about this in the last couple of years, really. She was like, yeah, people blamed her, essentially. They said things to her like, you worked too hard in your pregnancy, or you didn't eat the right foods, or you must have done something that you shouldn't have been doing. And I just...I really felt for her. I was just like, you know, even though I have a rare genetic condition, it doesn't run in my family. So what that means is, I am a spontaneous mutation, which is fun to be. So what that really means in terms of like the medical side of it is that there was a one in million chance that this could have happened, and it happened. It's nobody's fault. But then to put the blame on my mum, which of course, you know, sadly in our culture, the woman tends to bear the brunt of this, or all the whole...the whole thing about shame is put on the woman, but then the men have to uphold the honour. I'm sure we'll get into that. But yeah, that was all put on my mum, and especially at a time where she didn't know what my condition was. She wasn't set up to look after me in a way that parents now, when their child is diagnosed straightaway, they're like connected with a charity, they're given tools on how to hold your baby, you know, children are given access to treatment from birth. Like, whereas I had it at 14, 15. So I'm really glad that lots has changed, but I do really feel for my parents, especially my mum.

Image credit

Stacie Stine

Entry credit

Jess Farr-Cox