S4 E9: Shani Dhanda – Disability and South Asian Culture

Disability & South Asian culture

Shani Dhanda

Masala Podcast
Masala Podcast
Shani Dhanda: Disability & South Asian culture, S4 Ep9

I loved chatting with Shani Dhanda, the multiple award-winning disability rights activist.

Shani has a rare condition called: Osteogenesis Imperfecta (better known as brittle bone disease) characterised by bones that break easily, often from little or no apparent cause. Though, this has never stopped Shani from living her life to the fullest.

Shani has the most warm, welcoming personality that shone through the as we recorded the podcast. It’s clear that nothing was going to stop this determined woman from doing what she loves.

As we spoke, the conversation took many turns, but what was interesting was the fact that Shani grew up in a household where she was treated as an equal. The word “can’t” was banned from being said at home. Shani believes that this has made her who she is, able to live her life to the fullest and do good in this world.

Many cultures treat people with disabilities differently. In South Asian communities, any kind of disability carries a lot of stigma. Though, Shani says she never felt lonely. As a child she always had cousins to play with and she always found comfort in spending time with her grandmother. Even within her community, she says she never felt ostracised or bullied by anyone in her community.

Even though Shani wasn’t ostracised, her mother faced the stigma and was blamed for Shani’s disability. As is quite common in South Asian culture, the blame was laid upon her mother. Shani’s mother was told that she had worked too hard during her pregnancy and that is why Shani became disabled.

Later in life, when she became a young woman, she realised that she was being treated differently. People started telling her that she must have done something wrong in her past life to be born with a disability. Due to the many judgements she faced, she realised that a better support system was needed to make the world a better place for disabled folks.

Shani is one of the UK’s most influential disability activists, helping organisations integrate inclusion into their business frameworks.

As a keynote speaker and practitioner for inclusion, Shani helps organisations break barriers and integrate inclusion into their business frameworks.

Shani Dhanda makes it so easy to have conversations around inclusion and disability. She is all about showing us how we can all work harder in order create a more inclusive society for everyone.

Shani’s mission is all about removing systemic barriers that prevent marginalised and disabled folks from having the lives they want. I have no doubt that Shani will keep doing the amazing work that she does to change the world in all sorts of very important ways.

Shani Dhanda on Masala Podcast: Transcript

Sangeeta Pillai 0:36
I’m Sangeeta Pillai and this is the Masala podcast, a Spotify original. This award-winning feminist podcast for and by South Asian women is all about cultural taboos, sex, sexuality, periods, mental health, menopause, nibble, hair, shame, and many more taboos. Join me around my virtual kitchen table as I talk with some inspiring women from around the world, exploring what it means to be a South Asian feminist today.
It was a real pleasure to interview Disability Rights Activist Shani Dhanda on Masala podcast. Shani is a multi-award-winning disability specialist and social entrepreneur, listed as one of the UK’s most influential disabled people. Shani is also part of the BBC’s List of 100 inspiring and influential women for 2020. I found Shani an absolute joy to chat with. I loved her authenticity and her passion. Shani makes these important conversations so much easier. I have no doubt she will carry on changing the world in all sorts of very important ways. I hope you enjoy this conversation as much as I did.

Shani Dhanda 2:07
So I always describe myself as a very proud Brummie. So I’m someone from Birmingham in the UK who now lives in London. I was born into a big Punjabi Sikh family. So within a big South Asian community in the West Midlands, and I was born with a rare genetic condition. It’s called Osteogenesis Imperfecta. And it’s more commonly known as brittle bone disease. And the condition is characterized by bones that break very easily without any trauma. And by the age of 14, I had broken my legs six times.
So what it really meant is I never really had to have any accident or injury in order to, to break my bones essentially, I think the most notable thing about me when people meet me is that I have a short stature, you know, as a result of that condition, so I’m about three foot 10 in height, it is the height of a four year old, I grew up with a tough condition. It was very unpredictable. I just used to break you know the malarkey stick on hold. I also went to a special needs primary school. But I was in a very loving and big supportive family, which I’m very grateful for.

Sangeeta Pillai 3:28
That’s really lovely to hear. And growing up, did you feel like people or family or wider family kind of understood your condition and what that meant to you? What was the reaction like around you?

Shani Dhanda 3:41
It was a difficult time, I didn’t get my diagnosis until I was 10 years old. And that’s because as I mentioned, the condition is quite rare. So I had to go to specialist hospitals and doctors in order to get that. I remember as a child in my family, so I have an older sister and a younger brother. And I never thought that my parents treated me differently. So you know, I always used to get smacked by GQ. This time was always expected of me as was them. Even if I might, you know, my leg was in plaster, even if you know, I was in pain or whatever.
And I’m really glad I know it sounds really tough. I know it sounds really harsh. But I’m really glad that my parents instilled that value in me because life is pretty hard when you live in a world that isn’t designed for you. So I remember growing up and the word ‘can’t’ was banned in my house. My mom’s like, you’re not allowed to say that. You always have to try and do it. And if you can’t do it, you got to find another way. I think that’s, I guess why I have the strength that I have today is a big part of it.
But I think in terms of any sort of barriers, I think any barriers I really face is the fact that disability faces an even further sense of scale in South Asian communities. And in a way, when you’re part of a big South Asian community, you have a lot of protection because you’ve got loads of cousins. So I was never lonely.
You know if those of you were to play with a child, I always had company, my grandmother lived with us, we were best friends. And even in my local community, when we’d go to the Gurdwara, Sikh temple, everybody knew me. So it wasn’t any sort of feeling of being left out or being bullied. But I think it’s when I was becoming a young woman. That’s when I started to notice certain inequalities and just certain different types of behaviour. And I think it was mainly when, you know, people who would, who had known my entire family before I was even born, and who had seen me grow up so knew me, knew my personality.
But they were really surprised to learn that I wanted to go to university or, you know, they were really shocked, nearly fell off their chairs when I told them I’d learned how to drive. I just think they couldn’t comprehend how, how I’d be doing it because I think it just, they just thought I wouldn’t want it or wouldn’t be able to. That was quite tough. And I think initially, when I was first born, my mom actually faced a lot of backlash because I was the second daughter, and the comments that she sort of had were like, you worked too hard in your pregnancy.
And not only have you had another daughter, but look, she’s disabled. And I just can’t imagine why people would say that, like, it’s not helpful. It’s not supportive. through cruellest is and there, there were no other disabled children in the community that I grew up in. So I can’t imagine how much of an isolating experience that was, especially for my mum, because she thought she had to bear the brunt of those comments, not my dad.

Sangeeta Pillai 6:59
It’s always that way isn’t it, in South Asian families. It’s always the mom, it’s always the women really, that pick up the brunt of all of this. It’s hard being disabled, I think, in any culture, right. But I feel like within our culture within South Asian culture, that’s even more complicated. Because we don’t even talk about disability, you know, as a thing. Where do you think this comes from?

Shani Dhanda 7:25
I’ve been scratching my head, and really trying to figure this out myself for a really long time. Because if you think about it, we, as a South Asian community in the UK, were highly regarded. And we were always recognized for our contribution across society, like medicine, politics, for example, you will see very good representation of South Asians in those sorts of fields. So it’s not like we’re a community that is facing math on education, that we aren’t integrated in society, that we don’t have any disabled people, because the irony is, there are more South Asians who experienced disability than our white British counterparts.
And that’s why I really got into the sort of space that I’m in where I’m trying to help improve representation, speak about disability inclusion, not only in mainstream audiences, but within the South Asian community. Because when I look at the representation that I have, it’s just a white British disabled people. Yeah, there are more South Asian disabled people that exist in this country. We also can’t overlook the fact of culture, generational attitudes, traditions, as well as religious beliefs.
So I’m seeking, and I’ve had so many people say to me, Oh, you must have done something bad in your past life, in order to be born with this condition. And obviously, like, hot, like, I totally respect everyone’s beliefs, like, Believe what you want to believe. But don’t put it on other people. I think, again, I actually remember a time where people were saying this to me, and I started to feel guilty. How’s that? Oh, what could I have done? Was I a murderer to do this? It’s not a nice thing to say. And it’s not helpful. If that was my belief, then that’s something personal to me, however, that that’s one narrative I’ve heard.
Whereas I’ve heard of a new app, which is a kind of narrative that actually says, These are other parents that I’ve spoken to that have had children with disabilities. They’ve just sort of said, actually, it’s a massive blessing. It’s a service, I get to do stuff to service. And I got this amazing child. And God has given this child to me to look after. And it’s not it’s not because anyone’s done something bad in their past lives. It’s beautiful to hear, but isn’t it sad that I’ve had to wait over 30 years to hear that version? So, this, there’s so many layers of, of why we have such a poor outlook on disabilities. And then other factors as well.
Many people think disabled people don’t have the same needs and desires as non-disabled people. But I think disability is largely very misunderstood, not only in the South Asian community, but in every community. Because essentially, the fact that I have this condition to me is just like, I’ve got brown hair. That’s just another feature of me. I don’t wake up every morning and sit there and say, Oh, my God, I’ve got this condition, what am I going to do? I’ve never known any different. So it always really puzzles me that I’m the one that lives with my condition, the pain of it. I live in an inaccessible society where I can’t find accessible housing. I can’t use public transport. I struggled to get a job. Yet everybody else is awkward around disability, but it doesn’t affect them. It affects me. What’s that about?

Sangeeta Pillai 11:15
That’s really ironic. So many things that you said there. I think one I don’t think there’s anything in our culture that teaches us to look at disabled people differently. I mean, I don’t, I’m sure it’s the same in Sikhism. I know there’s nothing in Hinduism that is like that. I think that’s our own interpretation of it like this past life malarkey. It’s just I think, where we take something and then extrapolate it into something else that actually doesn’t have any relevance, because we don’t know how to deal with it.
I don’t think there’s anything wrong in the culture that we’ve come from. And I think what you said again, I think it’s other people’s discomfort. And that’s the thing you touched upon, is other people not knowing how to act around people who are slightly different. Yeah. And then they don’t know what to do with that. And then that discomfort turns into weird things that people say, I think.

Shani Dhanda 12:09
Some things that people have said to me, they’re like, Oh, if I had this condition, I’d kill myself. What? I think what that really means is that you think that this is so unbearable, that your life wouldn’t be worth living anymore. That says a lot about the person that said it. But when we think about it, what representation is there of disability? That’s positive? Because my personal opinion is, if you’re disabled in the UK, you’re either viewed as a benefit cheat, or that you want to be a Paralympian.
There’s no middle ground. Yeah, yeah. Like, I want to put on my TV and see disabled CEOs, disabled mothers, just people living with conditions and impairments just go on about their life. Yeah. And, and, again, what people don’t realize is, it’s not always our conditions and impairments that disable us. My condition doesn’t disable me, I’ve achieved so I’ve achieved more than non-disabled people. Despite living with my condition.
The things that disable me are things like living in an inaccessible society and the bias that I face. Yeah, that’s what disables me, but people don’t see it like that. They see it as a medical problem that is down to the individual to solve. Of course, we need to work with our medical professionals to do that. But people just think, oh, yeah, we need to fix you. And let’s put you this way. Yeah. Oh, we’ll be fine. But there’s much more to it than that. So I think we still need to do massive education within all communities on this.

Sangeeta Pillai 13:57
I think it’s let’s make you like us, and then we’ll understand you better, I think, is the thing rather than sort of trying to figure out there was an article, I think I was reading in the metro where you talked about this Asian guy, random Asian guy at a bus stop or comes up to you and says, Well, you’re never going to get married and have kids. And that struck me as cruel on so many levels, but also so presumptions like, how, how does he know what you want? Maybe you don’t want marriage and kids like that’s not your ultimate goal. Or maybe you do. I mean, it’s just like, what gives people the right to assume anything about anybody else.

Shani Dhanda 14:33
This particular incident happened to me when I was around 1920. I had just finished uni. I had a three-hour lecture in the morning and had to catch two buses to go to work. I was just about to get on the second bus. And he was at the bus stop, and I was at the bus stop, ts guy was an elderly, a South Asian guy. and yeah, just started nowhere, not assumed he would say hello. He just said, Oh, isn’t it a shame, you’re never going to get married. So he said it in Punjabi. I was going about my day. I’m a very nice person, always with a smile on my face. You know, I was thinking of probably like, you know what we’re going to do when I go to work when we’re going to eat for lunch that day and then all of a sudden, this comment was like a punch in the face. I didn’t know what to do.
But I think this is what a lot of people assume. And even though Earlier, I spoke, and I said, you know, my family had never treated me differently. There’s actually one thing that they have treated me differently about. And I think it’s again, because of their discomfort around a topic. But I must be the only South Asian woman who has never been pressured to get married. My family have never talked to me about getting married. And on one hand, I love it. Because if I wanted to get married, I would find her wanting to get it and do it. I don’t need them to do it. And I wouldn’t want them to. But on the other hand, I’m like, You taught me that there’s no such way. You didn’t treat me any differently. So why haven’t you spoken to me about this? Yeah, yeah, yeah. So yeah, I, I think I just think people think that people won’t want to marry me. And I know that’s not the case. And I just think it’s, I just think, though, when it comes to that, when it comes to the topic of things like marriage and having kids, we still have very, very superficial conversations.
Like, I’m always telling my mom off about this as well. Not all of them make a good couple, because they’re the same height. What ,why? True soulmate is seven, four. That would look nice on you, man, you’ve got to stop this Asian woman festival. And I can’t even get my mom to see this differently. So there is so much that people perpetuate without realizing they’re doing it. You know, it’s like, what height is this person, what is the skin color like? How hot are they? They’re educated. We are so superficial in all of these conversations.
And I think then other people feel a pressure and then have this sort of wish list or tickler list. And then you know, then they get frustrated when they can’t find the perfect person. The whole conversation of this needs to change. But absolutely, there’s no doubt about it. You know, people definitely assume that we as people that live with conditions and impairments either can’t or don’t want the same, but we are just as human as the next person. Just because I live with a condition doesn’t mean my emotions are switched off.
And so there’s always that to deal with as well. And it’s hard to live in it in an ableist world and a bliss society. And ableism is what racism is to race it to view those typical abilities are superior. And I think that the best way to spot ableism is to replace a situation with gender or race. So for example, if buildings made it impossible for women to enter, that would definitely be sexist, right? Yes, but it’s happening now to disabled people.

Sangeeta Pillai 18:43
As someone who is non-disabled, I don’t think I quite understood how much the world was set up for someone like me. Everything in my flat from the height of the sink to the cooker. None of these things are adjustable. I live in London, and so many tube stations don’t have lifts. Even if there are lifts, sometimes you have to go up a flight of stairs to get to the lift. The little Asian food market where I shop, my Indian groceries doesn’t have step free access. The places and spaces that I occupy have been created only for someone like me.
The only time I get a tiny taste of how things could be different is when I travel with luggage. I have two slipped discs in my upper back, which means I can’t lift anything heavy. So that’s when I need lifts and escalators and people to help me but that’s just one time. The rest of the time. The world is set up for me. It’s a privilege to operate in the world like I do. Sadly, I don’t think I even see it most of the time. I think people with able bodies for the lack of assume that the world is exactly the same. And I guess the world is very different, right? Say for you, on a normal day, talk me through what are the things like, the building, you said, in a day, when you’re waking up to the time you go to sleep? How is the world not fit for you?

Shani Dhanda 20:33
This is a brilliant question. And I actually filmed like a day in my life, just to count all the barriers, and there were 13 in the day. So first thing is when I wake up in the morning, and I want to brush my teeth, I have to get a stool to stand on, because I can’t reach my sink in the bathroom. That’s one. And then the second one is I’ll need to use a stall again around the kitchen. Because I can’t reach much there either.
In terms of my wardrobe, I’ve been able to lower the shelves and the rails in there. So that’s great. So as I mentioned, I can’t use public transport because it’s not accessible. So I’d either have to get a taxi or drive, but because I live in London it is so difficult. I know, I never get anywhere on time. And parking is so difficult. There’s literally no disabled parking in London. And I don’t know why. Then next I’m going to go into the office, I have certain adjustments for me. So I have a specially made chair, because my proportions won’t be comfortable in an average sized office chair, then I have a footstool as well, because my legs are always dangling.
And I have a smaller keyboard as well because that helps with my posture and things. So there’s that, then next I need to go and get some lunch. I don’t know why but everything I always want to eat is always on the top shelf. So when you ask someone to help cook for you. Yeah, you know, I’m only at lunchtime. And these are the barriers I’ve faced. And then let’s say wanting to go to the supermarket, you know, I have to ask people to help reach things, I can only buy a certain number of things because I can’t carry many things. I always try and use the trolley that’s made for wheelchair users because it’s much lower. So yeah, it’s kind of a never-ending list. And that’s just an average, a mundane day, in the life of me. Yeah.

Sangeeta Pillai 22:36
That’s what I was thinking. So we’re not even talking about, I don’t know, reaching for your dreams and finding your partner or, you know, like the bigger kind of goals that each of us has. This is just the everyday getting us up making up breakfast and fixing us have a tea and getting to work. I think most people in the world don’t think of this. And the other thing, I think you just said this like, but everybody wants similar things like we want love, we want to find a purpose, we want a life that’s fulfilled, we want to have fun, you know, these are kind of everybody, every human being wants these things. But if even the basics are so out of reach, how are you even expected to agree?

Shani Dhanda 23:15
I think a large part of this is because firstly, people don’t understand the reality of what it’s like to live with a conditional impairment. You know, throughout COVID, I saw so much empathy, so much compassion for one another, because it was something that we were all in together. And I think that concept of locked down was a way for many people to feel what it’s like when you want to do something. But external reasons won’t let you.
There are people where they can’t even leave the house because it’s not accessible, they won’t be able to get back in or let’s say they need carers, and they have to go to bed at 6pm because that’s the only time the carers can come and do that for them. Because that’s the way that the support system works. There are people that pre-pandemic, wanted to work and want to work from home. But we’re always told, No, we can never do that. It’s not safe data protection.
We don’t trust you. But as soon as there was a global pandemic, and it suited the majority, we will be working from home overnight. So I think the biggest reason that a lot of this inequality exists is because as a society, we don’t understand the problem. So when people aren’t aware, they don’t know how to help people that are in decision making positions, that only make decisions based on that old bias based on their own knowledge, and not thinking about the whole range of human diversity that exists. So all it’s doing is just perpetuating all of these inequalities. And, you know, before the pandemic, I used to say, there’s never been a better time to be a disabled person. And people used to look at me funny like, why would you say I’d like what a weird thing to say. But I used to say that because then disabled people were really finding their own voice.
We didn’t have to wait for major broadcasters to give us that voice or platform, we could reclaim it ourselves using social media, YouTube, things like that. And then suddenly, everything changed overnight. And now I’m really embarrassed to say that I’m from the UK right now, because of the way in which the government has behaved, but especially because of the way it is treating vulnerable and disabled people. It’s like your life didn’t matter. And, you know, the whole conversation about restrictions and lockdown.
People were like, well, why should we stay at home because of vulnerable people? Why do I have to wear a mask because of this? And I think unless people don’t realize everybody’s struggles are tied to each other’s, that we are all in this together. For that? Why is it fair for people to have to put their lives on hold just so the majority can get back to theirs? Because people think that this will never be them. People think that disabled people are in this camp, and non-disabled people in this camp. But out of 14 million disabled people in the UK 80% of those disabled people were not born with a condition or an impairment, they acquired an impairment throughout their life.
So the chances are, that disability is something that is going to affect you, whether that’s personally a loved one, somebody in the workplace, there’s no escaping it. And we shouldn’t go around thinking that we’re immortal, and we’re going to live forever. Because aging is something that if we live to an old age, which we are as a society, you know, that’s a natural part of experiencing disability at that age even then. So I think we really need to shift the thinking of this whole conversation.

Sangeeta Pillai 27:05
Sometimes I wake up with aching bones. I used to think that was something that only happened to much older people. You know, the grandmas, the nannies, the Amma cheese, which means all the women in Milan and by the way, so while my body is starting to age, and as uncomfortable as I feel saying it out loud, it is the truth. I can feel my body slowly growing older, getting creakier. When you’re young, it’s impossible to imagine being old, we expect to always remain in the world, just as we are bending our bodies to our will, sometimes misusing them because we can the first time you realize that your body might not always stay a supple, and as nimble as you’re used to.
Well, it’s a bit of a shock. I can now imagine what it must feel like to not be able to get out of bed because of stiff joints and aches and pains. I look around at where I live. And I think to myself, what would I need to do? What changes would I need to make if that were to happen? Talk of growing older is seen as morbid somehow. But as surely as we were born into this world, we will all grow older. And we will all leave the world at some point, every single one of us. So shouldn’t we be thinking about if we’re all in that place? How do we then create a world that works for people in that place?

Shani Dhanda 29:06
That’s why don’t get we are not designing for our future selves. I can say that because it’s affecting me now. And it will continue to obviously affect me in the future. But that’s what I don’t understand. For those who it may not have affected, you’re in for a big shock. Like housing, for example, only 9% of the housing in the UK is accessible, only 9% whereas 22% of the population are disabled. Now, I’m not saying that every one of those people are wheelchair users or they have the same needs. Of course not.
But there’s a big gap there. And, you know, stick with the topic of housing because of the housing crisis so what are we expected to do? Where are people going to live? I think so too. It’s really important to recognize that we as disabled people don’t have privilege and we don’t have power. I want to use an example of the COVID vaccine. It took a non-disabled white woman to get disabled people priority for the vaccine. This lady’s name is Joe Wiley, she’s a BBC radio presenter, she has a sister with learning disabilities, she had to use her voice as an ally for us as a community. But it’s not because there weren’t any disabled people saying the same thing already. But it’s because we don’t have that same privilege.
People don’t want to listen to us. People just think, Oh, stop moaning and just be grateful for what you’ve got. But people don’t understand the reality. So even without thinking, Oh, this might be me. Why not try and think about, you know, what, how can I be a better ally? And how can I really help people? Because, you know, before the pandemic, I used to talk about things like getting more disabled people into work, into creative industries being entrepreneurs, I don’t even know that I can have that conversation right now.
It’s like, how do we make sure disabled people can meet the unavoidable extra costs that they’re meeting? How do we ensure that more disabled people aren’t falling into poverty? You can’t think about those. Nice to have things if you can’t afford to pay your bills, and disabled people face unavoidable extra costs of 583 pounds a month more. You know, that’s a big stress to have on your head if you can’t, if you can’t work, or perhaps you aren’t given an opportunity to work. The welfare system doesn’t help you. I don’t know how people are managing, I really don’t.

Sangeeta Pillai 31:42
How, Shani, can we be better allies?

Shani Dhanda 31:47
Obviously, I could share 100 things, but I’m going to share a few impactful things and people that things that people can do straight away. So the first thing is to really understand disability, you need to understand that it’s a social construct. Like, for example, I don’t experience disability 24/7. It’s only when I’m faced with a barrier or a bias. So I’m just a person and I live with a condition, I am not disabled until someone, or something has made me experience that. So that means that we can change that, that doesn’t have to be my experience.
So first, educate yourself on disability, get to know what it means, the definition of it, and learn about it. The second way to diversify, where you’re getting your social media stuff, whatever you watch on TV, that’s another great way to learn about it and educate yourself. There are so many disabled content creators, there are so many films, books, podcasts, that all you know, that have been created by disabled people or featuring disabled people, and seek out people from your own community as well their day, to be an ally, you need to understand that it’s, it’s more than just being a good friend. And it’s more than just dipping your toe into a conversation. And Ally means that you’re taking somebody else’s draw on as your own. But you don’t know what it feels like to be that person. But you want to be a bridge between those two communities, like Joe Wiley, for example, the lady that I mentioned a little earlier on.
So if you’re going to do it, you’ve got to do it with good intent. That means raising your voice for when something isn’t right, let’s say somebody says something massively ableist. Or let’s say you can see a better way of doing something to make something a bit more inclusive. Maybe it’s a policy at work, maybe it’s something when you’re out in the supermarket, it can be anything. And quite often I have found myself in situations where people are taking pictures of me and videos of me, not because they’re doing it in a nice way. Because they want to do it and have a laugh at me or, you know, send it to their friends on Snapchat. And I have now found the courage to go up to these people and confront them.
And nobody ever expects me to do that. But nobody ever else standing around watching ever steps in. And I can’t explain to you how vulnerable I feel in that situation. I always end up crying. And no one steps in and it always surprises me. Like I’m a vulnerable woman. And they’re always men. There were big men that did this. And what happens is they always just start screaming and shouting back at me. And I’m like, hello, somebody helped me please just ask if I’m okay. Nobody ever does. So look, I’m not asking you to go beat up horrible people that commit hate crimes against disabled people. But what would be nice is if people just weren’t bystanders like and that’s what I mean by understanding what it means to be an ally because I think people do think, oh yeah, I support this cause, but it’s way more than that.
And I think for us, the South Asians really look at the spaces that South Asian people occupy, like places of worship community centres, if you’re going to go to a wedding, if you’re going to host a family event is accessible, like you will have hourly people attending, you will have all different people with different types of abilities attending, just give a little bit more thought about it. And if you don’t know what to do, just ask, you know, I’m so happy when people ask that I’m never offended at all. Because what it shows me is that someone’s actually put effort and thought into this, my needs have been considered. It’s not that difficult.

Sangeeta Pillai 35:44
It doesn’t sound that difficult. And I think that kind of behaviour that you described is shameful. I think that video taking and, God, I can’t even, it just makes me really mad. Shani as a South Asian woman who’s disabled, you’ve got like, the double whammy of discrimination, I think, you know, I know as South Asian women like how difficult it is to make your way in the world. And then you’ve got this extra thing to deal with. Every time I’ve kind of seen your videos, or we’ve chatted or any interaction that I’ve had with you, you are so positive. And I don’t mean that in a, let’s all be positive kind of Instagram a way. I mean, like really positive, like really standing there and kind of owning who you are and what you are. How have you navigated this?

Shani Dhanda 36:29
You know, everyone asks me this, and I never know how to answer it. Because I’m just me. And I think there’s many different factors that have contributed to this. Definitely being Sikh, definitely, with the upbringing that I had. So in Sikhism, we have something called Jack dhikala, which means eternal optimism. It means that no matter what you’re facing, it not to mean to say, you know, everything’s easy and got roses on it any you know, not, I don’t mean that it means that, despite whatever hardship you’re facing, you know, as seats, we have the strength within us to face that with optimism and with strength. And I can’t deny that that’s not something that I don’t have . I have bucketloads of it, and I’m surrounded by it. I was also, you know, raised in a family where I was encouraged to always do my best to be what I wanted to be to a certain degree, though, because I did have to fight for some freedoms as a South Asian girl, and woman, having a supportive family, an extended family was massively important.
Equally, I did have to do a lot of work to get to this point, if you had met the 20-year-old version of me, I wanted nothing to do with my disability identity, I really hate to shun it. But that was because I’d only experienced a lot of challenges and barriers up until that point. And it was actually in my early 20s, where I discovered the social model of disability. And the social model was written by disabled people. And it says, it’s not our conditions that disabled us, it’s the world, you know, disability is a social construct. As soon as I learned that it’s like this whole weight was lifted off my shoulders.
And it just made so much sense to me. And that’s where things changed for me. And then on one hand, I was like, trying to do everything I could to get away from this identity. But if I needed to park somewhere, I’d be using my disabled parking, but to park in an accessible Bay, or use a disabled toilet, you want to go to a concert, bring the disabled booking line, it was this conflict as I’m trying to get away from it. But if I want to do anything in life, I’ve got to use this disabled service or this, you know, so what a contradiction. So if I wasn’t happy, who I am, my parents, who I am in my family, my faith, I think all of this would have been a very different journey for me.
And again, like, faith has always been a big thing in my life and growing up, and I’m actually the only person in my family who was a non-baptized Sikh. And that was a big issue for my family. And I had to go through that. And there was a lot of turmoil at home for a certain number of months because my family were quite upset with me, my parents, they’re like, this is all you’ve ever known. This is how we raised you. Why don’t you want to be like this? And I obviously had to be childlike, I was like, always a child that questioned everything.
Whereas my siblings just got on with it, you know? I think they were good. The good kids our parents like. I don’t want to give the impression that everything’s always been rolling because far from it, but now I just think it takes so much more effort to be negative and sad. Rather than think, well, what good can come of this and everything that I do, everything that I advocate for, it isn’t purely to benefit my, from it for me, it’s for everyone in my in the communities that I am part of whether that was a South Asian community, that disability community, because I, I know that my voice can help other people like, what I do with it, and how I can be an advocate can help so many other people.
You know, over the last couple of months, I’ve been doing lots of different on-screen opportunities. And I thought, Wow, isn’t this a great win. The disabled people from ethnic minority communities. But you know, the messages that I get equally from non-disabled people telling me that they are loving, seeing, you know, their stories, or something that resonates with them being brought to life. So, whereas I thought, I’m doing it for x, y, and Zed, it’s gone, it’s gone far beyond that. And that’s what’s been really nice to see as well.

Sangeeta Pillai 41:12
I think that’s really, really heartening, actually. And it must be really inspiring for other South Asian people, disabled people, people from any marginalized community, to see you take up space in this way, like I’ve seen you on telly, I’ve seen you on TED talks, I’ve seen you like, in so many amazing places. And I always, it always fills me with great pride. I mean, I don’t even know you. But I just feel really proud and inspired, I think, by your journey, because I know how hard it is to fight. When you come from a background that isn’t kind of created for you, whatever that might be. Like, I struggle as an immigrant, I live in the UK, I’ve been here 16 years.
So there have been loads of things that I’ve struggled with in you know, in my way, or to create a podcast. So either there’s a lot of struggling when you don’t come from a very narrow place in the world, you know, like there are some people who are born into very privileged places, and then there’s the rest of the world. And it’s hard. And I know it’s a lot harder coming from where you’ve come from navigating the spaces, you’ve navigated.

Shani Dhanda 42:19
And you know, what I’m finding at the moment is, when we talk about privilege, there are a certain group of people that feel personally attacked when you talk about privilege. And that’s because they don’t understand the context in which we’re talking about it. So privilege is something that is honoured, you may be born into it, you have it, but it’s not something you’ve worked for. Just because I’m a South Asian, and I’m a woman and I live with a condition doesn’t mean I don’t have any privilege.
There are so many situations in which I do like, the fact that I’m a British citizen, to me is a massive privilege. The fact that, you know, English is my first language, and I live in a country where English is, you know, the first one, that’s a massive privilege. So privilege isn’t something that’s like this fixed thing, either. It’s tangible. I also have situational privilege as well. And I think that’s what I’m coming up against. More and more people are feeling like, whenever you talk about inclusion or intersection and you’re private, there are people that feel that by talking about it, you’re taking something away from them.
And that’s a very dangerous argument, a counter argument. And people, your people call me racist for talking about this. Other than that, how am I racist? This is my personal experience. This is not, if you don’t like it, don’t, don’t just call it racism, just saying I don’t like it doesn’t mean I’m racist. But I think I’m really proud to take up the space that I’m taking up. But equally, I’m so happy when I see other South Asian women out there doing their thing, because I never had any of that growing up. I never saw any of it growing up. I know we are much better now in terms of representation, but we’re nowhere near where we should be.
But I also feel that there are some South Asian women that won’t ever support South Asian wellness because they’re like, No, that should be me or that’s my opportunity. But that’s not the case. If there’s one who is fetching a woman out there, do it for all of us. And we are all winning collectively. So as you know, I’m always really touched by the support that I have. And, you know, so many people are saying to me they are shunning everywhere, and I don’t know if that means a good day or a bad bear but I’m like good you better get used to me. I’m going to keep taking up all this space.

Sangeeta Pillai 44:50
It’s been amazing watching you on the soaps watch you on This morning, you know, watching your TED Talk, which I thought was incredibly inspiring. I really, really loved it. What have you got coming up, tell us some of the more exciting things you’ve got coming up?

Shani Dhanda 45:06
More on-screen opportunities. It’s just really fun. I am planning Asian woman festival to take place in- person. They see oh my god in real life. So it’s a big thing to pull off, in addition to doing everything else that I do. And then I’m also working on launching an app for disabled people, a discount platform where disabled people can save money, because I’m very conscious of the fact that there’s no one out there doing anything about it. And here in the UK, right now we are sitting in the face of a cost of doing crisis. And really, I’m really worried about how that’s going to affect disabled people. So, lots happening, lots of plates spinning. But you know, watch this.

Sangeeta Pillai 45:55
I absolutely plan to watch this space and cheer you on and feel really excited for you. Thank you so much, Shani. This has been an absolute pleasure. Thank you for being a masala podcast. It’s been an absolute joy talking to you.

Shani Dhanda 46:08
Thank you for having me.

Sangeeta Pillai 46:13
Thank you for listening to the Masala Podcast, a Spotify original. Masala Podcast is part of my platform, Soul Sutras. What’s that all about? Soul Sutras is a network for South Asian women. A safe space to tell our story, to hear inspiring South Asian women challenging patriarchy, a space to be exactly the people we want to be and still feel like we belong in our culture, and our community. And ultimately, a space where we feel less alone. I’d love to hear from you. So do get in touch via email at soulsutras.co.uk or go to my website, soulsutras.co.uk. I’m also on Twitter, and Instagram. Just look for Soul Sutras. Masala podcast was created and presented by me Sangeeta Pillai produced by Anoushka Tate, opening music by Sonny Robertson.

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