Podcast: Changing perceptions of disability in South Asian Communities

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Trigger warning: This episode explores disability, racial, gender, and religious discrimination, including descriptions of hate crimes, and some listeners may find these stories distressing.

Transcript

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Amrit Dhaliwal: I didn't know any different and I accepted I'm blind, I can't see. But inside I, you know, the spirit of wanting to, you know, to live and to go to school like my brother and sisters, to get an education and have all those, you know, goals and aspirations like everyone else.

Huma Shah: I think we are very ignorant and I think that there is that racial stereotype, possibly, that exists. So it's just never easy I think, whatever spectrum you look at it from.

Samuel Buckley: Hello and welcome to The Disability Download, brought to you by pan-disability charity, Leonard Cheshire. On this podcast we respond to current topics, share stories and open up conversations about disability.

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Hi, everyone, and thanks for tuning in. I'm Sam and will be introducing this month's episode before handing over to our two guests. Now, two separate things inspired this episode, both of them earlier this year. One was an event held by our Trustee Shani Dhanda, which examined disability in the South Asian community.

Another was a report on BBC Asian Network that looked at the issue of hate crime faced by disabled people in the British Asian community and the overlap between ableism and racism. We got in touch with Huma Shah, the freelance journalist who covered the story about hate crime and then also Amrit Dhaliwal, one of our amazing volunteers at Leonard Cheshire, and we asked if they wanted to discuss these topics and their own experiences for an episode of this podcast.

Both Huma and Amrit said right away were soon talking about how they’d experienced disability in their communities and how other factors like family expectations, religion and racism had entered into those experiences from growing up to the present day.

Now before I handover I wanted to note a trigger and content warning. This episode explores disability, racial, gender, and religious discrimination, including descriptions of hate crimes, and some listeners may find these stories distressing.

Here is what Huma and Amrit talked about when they met for the first time.

Huma: Hi, Amrit, how you doing?

Amrit: Yeah not, too bad thank you.

Huma: Good, good. So tell me a bit more about yourself, Amrit.

Amrit: OK so this podcast came about because of the work that I do with Leonard Cheshire. So initially I was a disability speaker and I'm doing a lot more media work nowadays, which I absolutely love. And when I'm not volunteering then I'm a busy mum to two teenage children, so it's very busy and in my spare time I love visiting, you know like museums and, you know, creating artwork and so, yeah, that's me!

Huma: Sounds really, really good. I mean, for me as well, I'm, I'm not a mum yet, but, uh, my, I work as a broadcaster and so, you know, the interest and my connection with Leonard Cheshire came about after I was actually covering a disability story myself.

Amrit: Yeah

Huma: Which is just so interesting to, you know, understand so much about, I suppose, disability and perceptions of the Asian community and you know how that's changing, I suppose over time as well. And I'm just curious to know, like what it was that kind of intrigued you into working for Leonard and, you know, specifically within the disability sector?

Amrit: Yeah, I mean I'll be honest because I'm totally, I'm totally blind, I began losing my sight when I was five years old. And I've been very kind of open in the talks that I do, that for me my sight loss up until I started volunteering with Leonard Cheshire, a very personal, you know experience. I didn't really feel it was something that is maybe, you know worth sharing and you know, opening up to, you know, to others or what you know about because it was something that I was personally going through and I think that is a lot to do with, you know, the way that you know, my sight loss was perceived within, you know, the Asian culture. And the community that I live is very much, you know, impacted.

And that's why I'm so grateful for, you know the opportunity and the work that I do with Leonard Cheshire because it's helped me you know to get in touch with my own experience in in a whole new way. And you know and now to be able to look at that you know within the context of you know being South Asian. Because I think if I did about two years ago, I would have found that difficult because it does mean me kind of going back and looking at the challenges and, you know, all of the kind of stigma and stereotype that I've had to, had to endure.

Huma: Can I ask you like, how old were you when you started, you know, suffering from visual impairment?

Amrit: Erm yes, I was five years old and we just came back from a family holiday from India. And this is something that was told to me, so I don't actually remember this, you know, my mum told me that I started rubbing my left eye and they just thought just like a bad habit that I’d picked up. And then when it started watering and it became quite red, that's when they got concerned and my mum, you know, said to my dad you need to take her to the GP, uhm, eye hospital and that is my first memory.

So anything up until that point I don't have any recollection, but I actually remember my first memory being sat in the hospital with my dad amongst a lot of elderly people. I remember the smell of Werther's and mints. Sitting on these very kind of clinical chairs and just having no idea of what was happening and I don't even think my, you know, my dad did because he wasn't expecting, you know, like for us to, you know, go hospital. He probably just thought it's just going to be a regular check-up or get, you know, some drops to clear the eyes.

So I think he was I, I I sensed his, I sensed his anxiety and I remember him kind of, you know, preparing me from what he could see. And, you know, you're going to sit on a chair. You’ve got these machines. And you can, you know, you need to put your chin on there and they're gonna check your eye. And then from that point they tried, you know, they, it was revealed that I did have inflammation at the back of my eye that may have been there for some time but wasn't able to communicate that to my parents. And then I had treatment which didn't work. So I haven't been able to see out of my left eye since I was 6-7 years old and then unfortunately I started getting problems in my in my right eye.

Huma: Five years is a very tender age, isn't it? It's it's it's it's a stage where you probably would feel more vulnerable more so than ever, because you're still developing, you're growing as a person. There's, you know, there's events that are going to happen in your life, you will be going to school. And you know, you might be even compared amongst your siblings or cousins or extended family.

There's so many levels of pressures at that stage and comparisons are very rife. And you vividly described how you felt, remembering the nostalgic smells and all that. But do you remember how you were actually feeling? Cause I remember you said you didn't know what was going on, and you sensed a sense of anxiety you know from your dad. But do you actually remember how you felt in that moment?

Amrit: I think like you, you know, you pointed out that because I was so young, I didn't know any different. I'm the only disabled person you know in my family. So, you know, my parents and myself we had, you know, no one else that was disabled. We didn't, I didn't have any role models. We didn't have anyone that we could turn to you know, for advice. And I think I just, I just went along with it because I you know, I didn't really know you know what to expect and I think that's the very first thing that I noticed was the the attitude and kind of reaction to my sight loss was very much embedded in the medical model.

I don't know if you know like this idea that it's you that's got the problem. You've got the impairment. And so, you know, until you're cured of that, you are going to face these challenges and have these barriers to, you know to living a quote normal, you know, life like your brother and sisters and that it's, you know, very unfortunate. I was very, very aware of having long stays in in hospital and, you know, having all these treatments. I don't think there is a treatment that my dad you know, didn't explore, from acupuncture to herbal treatment to the, you know, treatment I was having in hospitals. Because even he believed it, you know that until you can see, you're not going to have any sort of life.

Huma: It's quite interesting, 'cause, like you said, you know your parents have tried so much. And I think another aspect, especially when it comes to disability and being Asian, is there's so much superstition around it as well. And people will tell you to do certain things that aren't actually medically safe, or to meet pundits, or to meet, you know, spiritual healers or whatever. Did your family face those kind of pressures from society growing up?

Amrit: Oh yeah, absolutely. And that and that has gone on even to the present day with, you know, being married. You know, when I've gone back you know, to visit India every, every year that I went back, I was, you know, told by a new Doctor that they'd found , that they’d be able to give me my, you know, sight back. And I suppose answering your question about how I felt all, you know, about this, is that I felt that it was holding me back as a person because I didn't know any different.

I accepted I'm blind. I can't see. But inside I, you know the spirit of wanting to, you know, to live and to go to school like my brother and sisters, to get an education. And have all those, you know, goals and aspirations like everyone else to, you know, go to university and work and get married and have children. That's where my focus, you know ,was. But I'm very aware that this pressure was around me that you cannot achieve any of that until you get, you know your sight back.

So I've had to spend my whole life having to challenge that which has been hard because it's not only being a disabled person, but it's being a disabled Asian woman. And that comes with its own stereotypes and stigma of how an Asian woman should behave, you know you should be seen and not heard. You shouldn't have, you know, opinions you shouldn't be in a relationship the leader, you know to, to lead, to challenge, to go out, you know to enjoy life other than being a homemaker. And having to fight those challenges of disability, I had to do all of those things.

Huma: I suppose it must have been a very lonely experience. For me I had two brothers who were disabled. In fact, the first born was born with complications and the second brother developed cerebral palsy quite early on and my mum often says it's not so much what people say but it's how you're made to feel. And I think for my mum, she'd notice things like family members just not coming over so much to support my mum thinking that, so this is going back on the superstition aspect of you know well, her kids aren't normal, so let's not see them that often. And these, this was the thinking in the 80s, here that you know times have progressed and things have changed.

And I think my mum developed a circle, a very different circle of friends as a result, mainly with medical staff and nurses, and they were from all backgrounds. And it really, I suppose gave me this innate, uhm, compassion I think, towards people with disabilities. Because as you say being Asian, regardless of disability, your seen to be seen and not heard as you said earlier. But uhm what, how did you, I'm just intrigued to know, whether you felt that your parents were pressured by those, some of those external social influences? Did that make you feel ostracized? And how did you navigate through your, you know, your own, yeah, personal struggles with sight loss as well? I know it's a few questions there but I just thought I'd break it down.

Amrit: Yeah, yeah. I think definitely the pressure was there, but it was kind of like silent because they, they had no alternative way of of you know viewing uhm you know disability that seemed that that was the only, the only way to view disability. And I can really relate to, you know, your experience. You know about people not, you know wanting you know to come because it's...it’s disability within the Asian culture a taboo subject. And I don't know if you also experienced this, there's a lot of shame around, you know, around it. And that is very much because it's embedded in you know religious beliefs that if you're disabled, it's because you've done something in your past life and you're being punished, or it's something that you have to endure in this life in in order to be rewarded in you know eternity. And that's very very hard to you know to challenge you know beliefs and views that are that you know...

Huma: Can I interrupt just to ask you, did that change your view of of your religion in any way? Did it did, sort of affect your belief process based on what happened to you?

Amrit: Uhm, it it didn't, it didn't change it. But uhm, I did it you know, I did question and challenge, you know, why you know, it is that what our religion says and obviously discovered it, it doesn't sell religions about you know, having you know, compassion and you know, you feel for others. You know, I'm a Sikh and it's about, you know helping your community, having compassion and, you know, and treating everyone, you know , you know equally. So I was glad to discover that it it, you know it isn't the case that this, you know disabled people are being punished but it is something that even to the present day is still said to me. And I think that is what upset me more that, that people feel that they think it's OK to say that to a disabled person face.

I remember going to an engagement party and they had a guest there someone ,I you know was, I didn't know and I wasn't familiar with. And they came up to me and just said you know, can I ask you how much you can see and I said, you know I don't have any you know useful vision and they just turned around and said oh well you know that's because you did something you sinned in your last life. And I was shocked.

Huma: Just to ask, did you challenge them at any point on that?

Amrit: No, no, I didn't and that's the kind of things that I'm dealing with in questioning and learning myself that why didn't I, you know, challenge that? You know these behaviours you know in, you know at the time? And I, and I suppose the only answer I've come up with is because I didn't know any different and so I accepted that. You know, to come hand in hand with the fact that I was disabled, I also, you know, began to believe that this, this, this is, you know, normal.

Huma: You mentioned as well that you had siblings, you have siblings. What was it like growing up with siblings who were able to see? Did you ever feel, you know, ostracized in any events or any occasions with them? I would imagine that they would have, you know, very much inclusively part of their day-to-day, outings and so forth. But how was it, you know, growing up with siblings who could see?

Amrit: My siblings are absolutely like fantastic. And I I'm very close to my sister and you know without her I don't think that I would have managed my, you know, blindness as well as I did. I was so close to her I was able to, you know, talk about, you know all the you know negativity. And my whole family, like immediate family, were very you know loving and you know and always encouraged me, despite all of the you know pressures around them. So the immediate family are very loving and supportive, but it's more the, you know, the community, friends and family, and generally the community around us is where I've, you know, faced it a lot of discrimination and stigma.

Huma: You mentioned earlier that you know you felt like you just couldn't respond to some of those absurd comments people would make and effectively internalized. So and then kind of that trauma has obviously manifested over years. Do you feel you're at a stage now in your life where you are finding that attitudes have changed, and that you do feel more empowered to respond to such absurdity at times?

Amrit: Oh yeah, absolutely, that's been like the huge benefit for me, you know, doing, doing the work with Leonard Cheshire. Because I feel from the age of five, you know, I was very much wrapped up in cotton wool, protected and I have, I had no other way, you know, to perceive my impairment. So I had no alternative way, I wasn't able to look at that against other views. I didn't have any other role models to you know to compare to. I mean, the only role model I had as a, as a 6-7 year old was Roy Orbison. Stevie Wonder? And then later on, Gabrielle? Yeah and I couldn’t really relate to them as a, as a young, you know, young girl growing up in a South Asian community. And you were saying as well about things being like this in the 1980s, so is that something that you feel has changed now?

Huma: I don't know how much has changed. So I had another case study who I was speaking to. I did a piece on this particular individual whose son has Down Syndrome. And that the conversation started that she decided to teach her son Arabic through sign language because the Quran is quite an important part of the child's participation in, you know, understanding more about the religion. And she decided to do these Tik Tok videos to, I suppose promote that, because nobody really thought about including the, you know, children with disability in in those kinds of classes or in that arena. So she came up with this idea of teaching her son the Arabic vocabulary, terms and words and stuff through sign language. And people were trolling her for it.

And the story, as sad as it sounds, initially, it started out to be about this brilliant, innovative idea that she's had. But the story actually became about the backlash she's received off the back of this innovation, which was such a sad thing. Because something with such a positive spin had just filtered down to her crying to me saying. I don't have ann account to talk to you Huma because my Tik Tok account’s been disabled, my Twitter’s been disabled, purely because people are complaining that they're not impressed with what they're seeing and my son shouldn't be on a social media platform. And this is only going back about a year and a half ago, and it still gives me the chills today because I remember spending, you know, a lengthy time, talking to Tik Tok, talking to Twitter and saying why have you deactivated this account? Have you seen the content? What is it that's so offensive, you know? And then her account was reinstated and an apology was issued, but that happened because of the power of the masses, you know, there were enough algorithms there, you know, pumping in, telling you know these social media accounts to block it.

And for me, it really was a time of sadness understanding that, that nothing really changed, you know. And I think in 80s and for my brother's case, I'm going to be very cautious and not saying anything about the names or whatever because yeah, none of it was taken to court, there was no arrests made or whatever. But I think well it’s very obvious it was a racist incident where my brother was coming home from school. He had a special bus and they would pick them up, because he went to a special school. And he’d wear a high collar on his chair. So he vomited and the bus driver didn't stop. And he carried on. [audibly upset] Sorry, it's quite emotion.

Amrit: Yeah, no, I understand. It must be yeah.

Huma: He carried on driving. He didn't stop to, to hear the cries of the kids.

Amrit: Yes.

Huma: To understand that there‘s trouble. I genuinely think it's because of the colour of his skin. And I think this is, this was the other thing that I think with disability, maybe attitudes were different towards all types of people for different reasons. And I think being Asian or black, you do have that vulnerability of racism element being there. I think that element’s definitely changed today. I think people have moved on from the racism aspect more than how people from our culture have progressed with the notion of just accepting somebody with a disability. Yeah, and I think, I think there was a lack of trust on my parents’ part.

Amrit: Yeah.

Huma: To trust the police to deal with it or to trust anybody really. And all he got was a suspension from his job. You know, yeah, so I suppose there are lots of layers to understanding that we often forget, and I suppose one of the things that often annoys me and something we get taught in our training, is that when there is somebody who may be in a wheelchair, who may be with somebody, you don't tend to talk to that person who it's about. Although you can't see, I'm pretty sure if you were with somebody, they would be looking at that person.

Amrit: Yes

Huma: And it's just one of those subconscious actions I suppose that really...and I don't know why we are like that. That's the other thing. I don't know why we tend to behave in those ways. But it's just. I can only imagine it being a very difficult time.

Amrit: Yeah, I'm really sorry, you know, to hear what happened with your brother. But I think that's why it's so important that we do like podcasts like this and, you know, keep on putting out there, you know, more and more awareness. Because I I believe that that's the only way that we're gonna, you know, be able to bring about any, you know, type of change. Because if we sit silently, and that's what I feel ashamed that that I didn't challenge, haven't started challenging, shaking it up until now. Yeah, but I think you know, you said spot on, it's because of the fear of the repercussion of challenging it for everyone you know around because those beliefs have been there. And that behaviour has been there for so long. I don't think it's going, it's going to be easy, but it but it has to be, it has to be done because it is just straight out, you know, discrimination.

Huma: Yeah, I mean I mentioned earlier that how I feel like the racism angle has actually declined. But having said that, I recently covered another story about somebody who doesn't have a physical disability, but she suffers from MS. Yeah, and for that reason she needs a disabled badge so she can obviously park closer to places that she needs to get to. And whenever she displays the badge, she just gets abused from so many people and they'll just say that oh, is that you know, is that one of your aunts’ badge you're using? You know, you're all the same .You're all the same. You're just like the others. You're just one of them, aren't you? And she’s obviously Asian. It’s just like what do you mean? And again, she's a female. She can't explain that actually, my disability is hidden, but I struggle. And I think, I think we are very ignorant and I think that there is that racial stereotype probably, possibly that exists. So it's just never easy I think, from whatever spectrum you look at it from.

And I just don't know how much attitudes are changing still. Like, it's really hard to measure it. And I think the other part you raised earlier was about raising awareness. And I, I thought to myself the other day, you know, we have these great parades for Pride Festival and all that. But do we ever have anything for disabilities? Like we don't, we don't have those sort of events or marches to celebrate our uniqueness, to celebrate that we are different.

Amrit: Yes

Huma: Who does that? And disability, people of disability are also in a vulnerable category as well. Just as people who are facing, you know, backlash for their sexuality. And I think I I think we need to make more noise around that around you know, normalizing that these things are very much part of our life, it's very normal. We just have to adapt to their needs. That's all it is.

Amrit: Yes absolutely with you there you know about there being, you know more exposure to disability and disabled people, you know, I thought exactly the same. You know that we have all these other events, and you know, but nothing I've seen nothing for for disabled people.

Huma: And I think it's a time to perhaps or potentially document certain stories, diaries of people you know, expose that in the media. Secret filming of what they're up against, the daily prejudices they face and they experience, And to then collectively unite and to have banners and stores and everyone else to promote that inclusivity. And only yesterday I went to a departmental store, it’s I'm not going to name it, but it's, uh, a children's one. You know, babies. And I, I was just so stunned because there was a massive poster of a child with Down Syndrome in there and it just made me feel like, yes, we are actually making progress. We are celebrating individuality. We are, you know, celebrating diversity around us in these stores because they always paint a very perfect picture don’t they of childbirth and child development and all that. Actually, it can still be beautiful. It's different, but it's beautiful.

Amrit: Yes, I agree I think these images, it's fantastic to have them, but my concern would be is what are those images portraying to the people looking at them? That would be my, you know, concern because, you know, I'm married, I have two children, you know, people looking from the outside, you know, see that you know, I'm independent. But I'm also aware from, you know comments that that have been made, that they believe that that's only been made possible because my husband is caring for me. You know, I've, I've even had people coming up to me and saying, you know, oh, you look lovely, you know, did your husband get you ready? In this idea that he's you know cooking for me, he's doing everything, he's the one bringing up the the children and all the burden is is is on him. And you know poor, poor him You know that that he's been lumbered with this disabled person. And so that's what you know, what worries me is what, how, how are people perceiving those, you know those images, you know, do you worry about that as well?

Huma: So I look at it in quite a positive way and I think the people that are making those judgments about, you know, has your husband made you feel this good or look this good or helped you in whatever capacity, it's probably deriving from their own insecurity. And people will often pick on those issues when they're not getting the satisfaction that they can see others are having. So I would say I would definitely put a positive spin on that.

Amrit: It certainly gives me that opportunity to, you know, to clarify that no, my husband is not, you know, doing everything for me. But I would say for me the negative side of it is that it takes away I think you know the the fact that, even though I have sight loss that I am still able to, you know, I'm also in that position to be able to care for the the children and my husband, you know, to run the home and I'm, I'm still like, you know, able with the help of my husband, you know equipment and support to live independently. So I do find that very, you know, frustrating and I think that is really now the biggest challenge for me, you know, whether I'm within the Asian community here or when I go to India. This idea that I'm not capable of doing anything.

Huma: Amrit it was so lovely talking to you. Thank you so much for sharing your experiences.

Amrit: Yeah, you too, you too Huma. I think we haven't even begun!

Sam: As Huma and Amrit said their goodbyes and we all headed off to our next appointments, I was struck by how quickly the time had gone and how much more there was to talk about. In fact Amrit and Huma both said the same to me afterwards.

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So do tell us if you want us to revisit this topic. For now though, it remains for me to say a massive thank you to our two guests, Amrit Dhaliwal and Huma Shah, for giving up their time and being so open in their discussion. You can check out the show notes on our Simplecast site, where you'll find relevant links and places where you can hear more from Amrit and Huma.

We'd love to know what you think. Get in touch by emailing us at disabilitydownload@leonardcheshire.org. Or contact us on Twitter or Instagram @Leonard Cheshire And if there’s a guest you'd really love to hear from, reach out and let us know. And don't forget to like, share and subscribe!

Thanks for listening. I'm Sam and this has been The Disability Download.

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