Finding a Partner While Living with Disability: Challenging Narratives | Saima

In this episode Saima joins us to share her experience of looking for a partner. She provides insight into the approach she took, which was guided by her faith, and offers invaluable insight for others who may be looking for a partner or dating. She highlights the importance of knowing your worth in a world that often treats disabled people as lesser than.

Please note this Podcast is provided for general information only, it does not constitute as medical or professional advice. The views expressed by guests on this Podcast are their own, their inclusion in this Podcast is not an endorsement.

Intro and outro audio by podcast.co.

[Image description: The image has a light cream background with a image of two blue hearts to the left. To the right, bold black text reads “Finding a Partner While Living with Disability: Challenging Narratives” with the guests name, “Saima” written below in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the edge.]

Transcript

Elizabeth 

In this month's episode, we're joined by Saima, who shares her experience of partner finding and advice for those who are looking for a partner or are dating while living with chronic illness or disability. Thank you so much for coming back again, Saima. It's lovely to have you on the podcast. 

Saima 

Thanks for having me. 

Elizabeth 

And you've come on today and we're going to chat a little bit about partner finding. 

Saima 

Yep, so very different to what I discussed last time. 

Elizabeth 

Yes. a bit different to access to that. So did you want to sort of give us a little bit of an overview of you? Is there anything you wanted to share? 

Saima 

Yeah, sure. So I might have said all this before in my last episode, so I might repeat myself a little bit. So essentially, I have a condition called Leber's amaurosis. So for me, that means I have no vision at all. And I've had the condition since birth, so it's all I've already known. So That's kind of like in terms of health conditions, that's kind of my background in terms of my own experiences. But obviously I've known other people with various health conditions. And especially when it comes to a topic like this, I think it's not only going to be my own experience that kind of comes into it. I can definitely, the reason I'm so passionate about it is because of what I've seen from other people's experiences as well. So I am married. I've been married Four years. I had to think about that. It'll be 4 years this September. And I met my husband three years before we got married. And he's also visually impaired, but not with the same condition as mine. 

Elizabeth 

Oh, so coming up for your wedding anniversary next month then? 

Saima 

Yep, 25th of September. So it's really funny because my birthday is in September, the week before. And when we were looking at venues, we actually did find one of the dates that was available was the 18th of September. And I went, heck, no, we're not doing it on my birthday. I want separate, I want two presents. So now he's like, okay, fine, you're getting a birthday present and an anniversary present. So yeah, it's just, yeah, it's a funny thing. But I said to him, well, at least you can't forget. 

Elizabeth 

That's very true. Yeah. 

Saima 

So yeah, four years, which is crazy when I think about, you know, how much we've been through and how quickly that's gone. It's always such a surprise because again, even prior to us getting married, we went through a lot. So it's really weird thinking about that. Like 7 years of my life has been spent like, doing all this. It's crazy when I think about it like that. 

Elizabeth 

Yeah, because you knew each other for three years before. So I suppose you would have known each other in that time as well. Yeah. So how did you 2 meet? 

Saima 

So this one's always a funny one. So we met through a really rubbish site. So, okay, I guess I should go back and give a little bit of background. So with a topic like this, it's really important, I think, to get so many nuanced views because it's such a very personal thing and a lot of it is, you know, often influenced by people's backgrounds and where they're from and their own values and things. So for us, so I, you know, I'm A Muslim, so we don't typically date. So it's essentially from the get-go, the purpose of when you start that process of looking for someone, it is to get married to them. So the topic of marriage comes up very, very quickly, not in a will you marry me way, like, you know, but in more in a how do you envision marriage being way, right? So we don't, you know, I just strongly wouldn't advise, you know, sort of deciding that very, very, very quickly, but it's more the context of it's discussed, the idea of marriage is broached very quickly. So to make sure that you're on the same page with that. So the websites that I used were more kind of geared towards marriage rather than dating necessarily, which again, so that affects how the profiles are set up. It affects the kind of questions that you might be asked when you're setting up your profiles and the kind of conversations that you start to have. So it's all very, not intense, but it's all very kind of, well, from my point of view, I'm very kind of, I'd rather get all the questions out of the way kind of thing. So I, it's not, I'm trying to figure out, I'm trying to think how to put it. It's not the kind of thing where you kind of small talk for ages. It's usually like, especially with me, I sort of get into the big stuff because I, from my point of view, I just want to know if this is the right fit for me. But you know, it's not as dull as I'm making it sound. I don't sort of sit there with a list of interview questions and start asking. So it's a little bit less structured than that and it's more natural, free flowing. But yeah, anyway, so we went, we met on this really rubbish site. And the reason I say it's rubbish is because, so I use speech software and hilariously the website wasn't that all that compatible with speech software, but for some unknown reason we both sort of stuck with it. But I think by this point I'd been, I'd used so many different platforms, spoken to so many different people, had so many different experiences. which is another, thing in itself of, going through that process that I just sort of thought, oh, it's another site. Let's just give it a go. I didn't really expect anything from it. I was in a, I was at that place where I was kind of like almost going through the motions a little bit. You know, you sort of look at people's profiles and you sort of almost predict what this person's going to be. Like, you know, you kind of get a feel for, okay, yeah, you know, I know where this is going to go. And then I saw this profile and it looked really good and I thought, okay, this is really well written, which is a surprise, like it's a bit of a shocker. It looks really well written. It did say in there that he was visually impaired and I thought, okay, this is interesting because I'd never really, I mean, I was open to the idea. I'd never really been against the idea, but I also, you know, was open to sort of, like it just wasn't a consideration for me whether they were visually impaired or not, whether they had a health condition or not. I was open to just, you know, talking to people and getting to know them. And this was the first visually impaired person I'd come across. That was also the same because most of the visually impaired men I'd come across were saying, no, no, we want sighted partners. So they sort of turned me down straight away based on that. So I thought, this is intriguing. So it was one of those profiles where you had to like the profile and then if the other person liked you back, you'd match. So I liked it and I forgot about it for two weeks because he obviously hadn't got round to seeing it. But it's always a joke. He always says, no, I liked you first. I'm like, no, you didn't. Because I had to wait two weeks. So you didn't like me first. It's always a thing. So I forgot about him and just sort of, you know, carried on with things. And I was actually talking to someone else, but that just didn't go anywhere because it was, he was a bit strange. So when I unmatched from the last person I was talking to, it immediately matched me with this person. And I thought, okay, who is this person? And then I looked at the profile and almost like we reminded myself and I thought, yeah, I remember now why I matched this person. And then we sort of started talking from the messaging through the app initially, but because it was so badly inaccessible, we sort of switched quite quickly to just like phone numbers. And the only reason I did that was because it turned out we had mutual friends in common. which was just bizarre. So we met through this app, but actually, we did have these mutual friends in common that we could have met through, but they just never really thought to introduce us, probably because of the age gap, because there's a nine year age gap between us. So I guess, some people sort of think, oh, that, that's probably not going to be a match that works. And that sort of reassured me that he knew names and, people that I was familiar with and he mentioned them and before I did, so he obviously knew who they were. So I thought, okay, this is a person, this is a legit person. And then he showed me some of the work he'd done in America, like some of the journalism stuff he did. And that kind of, again, reassured me that, okay, this is legit, this is a person, like this, let's see, let's see where this goes. So we quickly sort of left the rubbish app behind. And then it just sort of, yeah, it sort of just progressed from there, I guess. 

Elizabeth 

Yeah, because you had those sort of mutual friends that gave you a bit of reassurance and confidence, like you said, like he was who he said he was. 

Saima 

Yes, I probably wouldn't have progressed as quickly as I had to the phone if that hadn't been the case. Having said that, the, so this is, again, it might just be a visual impairment thing, it might just be amazing. So a lot of these apps, what they like is a voice feature, a voice message feature. And the thing is with that, I guess it's, I guess it's probably the equivalent to somebody saying, can I see your profile pic, right? Or, you know, I need to see a picture of you. just to get a feel for the person, because voice is huge, is a huge thing. It's just, it's a part of, you know, it's a part of who you are. So it was obviously like, I was curious to see what would he sound like? And that, you know, you can gauge a lot as well through the way someone speaks, how they speak, because obviously with text messages, you know, a lot is lost through tone and things like that. So It is, I think it's important for me personally to have that feedback of, hearing someone speak and just getting, getting to know how they speak. So I probably from that angle probably would progress quicker on to like. like a phone call, then I would, then someone else might need to necessarily. Other people might be, more comfortable to stretch it out over text on the app a lot longer than I would, just because I need to get that feel for who I'm speaking to. 

Elizabeth 

Yeah, that makes sense. And like you said, it's such a big part of like that communication, whether you kind of gel when you're having that back and forth in a conversation and just sort of gives you a bit more of a picture of like who they are as well. 

Saima 

Yeah, definitely. Yeah. 

Elizabeth 

So what was it like going through the process of speaking to different people? And I guess maybe you said that there's a few people who were specifically looking for sighted partners. How did you feel about that? 

Saima 

So I mean, see, I could talk about this a lot. Like it's something I'm very passionate about. And I think there's a lot of work that needs to be done with regards to this. No, I mean, Okay, so taking the issue first of people wanting side partners. I mean, that's fine. You know, everyone isn't held to their preferences and that's fine. So I never really took it as a rejection as such. I just thought, okay, cool, that's fine. And they were upfront with me about it and that's fine. The issue I have is more around family influence with regards to that. So again, I know I'm aware I'm speaking from my own kind of cultural background here. But what tends to happen, and I'm fortunate that this never happened to me because I have open-minded siblings and my mom never ever did this to me. But other relatives did do this and say things. And I've heard it said to other people that, especially if you've got a health condition, no matter what the health condition is, you're going to have to go abroad and get married, right? Because it's just the easy option. And they'll portray it in a way of, either they'll portray it in a way of nobody here is going to have you, right? As blunt as that. Or it will be more along the lines of, if you can give them a better life here in this country, they're more likely to stay, whereas somebody in this country isn't going to stay. So it's almost like you need to trade something that because of your health condition, you're worth less. You need to then give somebody something, give somebody an incentive to then stay with you, which is heartbreaking. And the thing is, I hear it so much. I mean, even now, I know people who are single, never ever been in that situation. Their families have just sort of forgotten about them and left them there. And in the context of like, again, culturally, typically, usually family tend to be quite involved or, that at least ask, for example, my, sighted siblings, people would have said, oh, when are you thinking to settle or, in that, even in that context, but the visually impaired or, anybody with a health condition tends to get forgotten about and pushed to one side. or told that they, you need to marry somebody with no health conditions, somebody who's fully able. So I think it depends on where that comes from. If those men genuinely felt like that was the best thing for them, fine, you know, that's fair enough. But if it's coming from a place of insecurity or a place of, you know, that's what we've been told and that's what's been pushed at us, then I think that's where it's an issue. And again, I think Look, I mean, I remember when I was getting married, a lot of people said things like, oh, you know, you're going to put yourself through unnecessary strain. Marriage is hard enough as it is. Why would you do this? I mean, someone even said to me, why on earth would you do this to your own mother? What have I got to do with their marriage? It's got nothing to do with me whatsoever. Why does it affect my life? And this was another visually impaired person who said this to me. You know, basically you're being selfish and you're going to put extra strain in your family by bringing another visually impaired person into it. And you can either take that as that person lacks confidence or you can take it as that. The prejudice is so ingrained in us that we do it to ourselves and to each other without even realising that we're doing it. So that is something that definitely needs to be challenged and tackled. And I've seen it across different cultures, different communities as well. Like I said, for me, it was just never a question. I just happened to have married someone who was visually impaired. It wasn't why I was Like I didn't, it just wasn't a factor in my, what I was looking for either way, whether he was or whether he wasn't. I mean, I spoke to some, I was even speaking to somebody who had cerebral palsy. I, it just wasn't, it just wasn't a factor for me. It just happened to work out that way. So that's, I guess that's that. In terms of the actual getting to know people process, I mean, It's funny because I've spoken to people who've dated as well and, you know, gone down the dating road, you know, the more kind of common place thing to do. And their experiences haven't been much different from my own. You know, the typical thing of it being online and the moment somebody hears visually impaired, they sort of either back off or they get curious and then back off. It's very, it's, It's an interesting experience and I will say you need people around you. If you're going through it, you need to talk to people. It's because it can be emotionally draining. You have to have a thick skin. Because the online world is quite shallow anyway, right? Just generally people will tell you that regardless of whether they're visually impaired or whether they have a health condition or not, people will reject you based on your size, your skin tone, your height, you name it. So the online world is very shallow anyway. Add a health condition onto that and the chances are you are going to hear some things or I remember somebody said to me once that I'll only marry you if you let me, if it's a polygamous relationship, because I don't want to have kids with you, but I'll take you on. People will say things like that. And the thing is, it's so casually said, like, what did I say wrong? So yeah, you need to be able to talk about it. You need to be able to laugh about it, take a break from it, and develop. And understand that it's not personal to you. I think that's really important. Like, we can't take these things. It's not happening because of anything I've done. It's happening because, you know, this is the person. And this is unfortunately the way that dating or, you know, marriage finding is set up. And I think that helps if you realize that it's not just personal to you. 

Elizabeth 

Yeah, you take that kind of. When you take it away from being personal to you, it stops it from being or feeling like a reflection on your worth maybe as well. And I think a lot of stuff you've touched on, it does almost perceive that disabled people have, like they're worth less just because they're disabled, that you're inherently worth less, which is obviously not true, but it is something that's held quite widely in society. I've noticed that a lot. And then when people speak about like dating or experiences of relationships, saying similar things that they would potentially not feeling like particularly online, I suppose. I've never personally done online dating. I met my husband. We worked at the same place, so that I kind of met him. So I told him quite early on about my health conditions, but it didn't bother him. So I was quite lucky in a way not to have had to have gone the online route, but that I went the route that I did and met him the way that I did. Because I think that for me would help, just because like you said, it does feel a lot more shallow online. It feels like people maybe are perceived as being slightly more disposable, particularly if they're on an app and there's like always other people to choose from. Whereas if you're in person with that person and you're just like together having a conversation, it's not that same dynamic. So I do think that's quite interesting and I'm interested to see how that kind of affects things. But there definitely is a perception of like people's worth being less, like you said, that you have to bring something extra to the table, just almost make up for it. 

Saima 

Yeah. And I think that that's a huge problem. And I think that's what I faced, when the man who said to me, oh, do you know, sure, I'd marry you, but only if I could have a polygamous relationship, you know, because I don't want to have kids with you. Like, it's almost like a... Although there was one and it's funny, it's funny just because of the way it was phrased. I just couldn't quite believe that somebody did that. So he obviously looked at my profile, read it, which by the way is really rare because people tend to, that's another thing. So people will tend to swipe, especially if there's a swipe optional or pass because they'll look at a picture, right? So they'll just look at picture, they won't read anything else and pass. And that's quite common. So again, when you're looking through people's profiles, I kind of knew very quickly that, who was worth messaging. If I could see that the profile wasn't filled out, I wouldn't message them because essentially that kind of means, if you haven't put anything down at all, then chances are we're probably not going to align just because obviously, if you haven't put the effort in to fill it out. Equally, people, you can tell when people have not read your profile at all because, you know, I'd get messages from people who are outside of the UK, even though I was very clear. in the UK. Anyways, so somebody, sent me this really long message. She'd obviously looked at my profile and replied and, reached out. And at the end it said, PS, please note I'm messaging you even though I know that you're blind. And I went, yep, that's definitely a pass. We're not doing that. 

Elizabeth 

Yeah, definitely a pass. 

Saima 

And it was just the way it was phrased. I just couldn't help. What on earth is going on there? Yeah, it's funny. I mean, I will say I've had some good experiences in terms of, I met some really good people, and it wasn't always the case that, everybody, the reason it didn't work out was because of anything to with visual impairment. Like sometimes it just, there were a couple of people I thought, we're better off as friends just because we didn't have enough in common. And it was as simple as that. So, it wasn't always, the case that things didn't work out for that reason. I mean, there was another person that I was speaking to before, so this guy, it didn't work out and that was because it was toxic. So it had nothing to do with visual impairment. I didn't even come into it. And that's another thing, people, it's worth remembering. And this is what I said, you know, what I will say to people when things don't work out. It's not always, yeah, sometimes it can be about your health condition, but not always because people, you know, who get into relationships, sometimes they fail. And that's just, it can happen just for, any reason that I say in this case, it was the best thing for me. And if I had married that man, I don't think, life wouldn't be good. So I came to my senses and moved away from that. And it was something that it was, I'm glad I did. And I'm glad I went through it because I needed to learn from that. And I learned from it. But the reason it failed had nothing to do with, my visual impairment or the fact that he wasn't, he was fully sighted, it just wasn't a factor. It was just him, the fact that it was toxic. 

Elizabeth 

Yeah, and it's important, like you said there, to remember that, it's not, like, it's sometimes it's just things that are, you know, out of your control as well, like you said, it was just a toxic person. It wasn't anything to do with you at all, and all the way that you interacted with him, it was just that he wasn't the right person. 

Saima 

And that would have been the case if he was with a sighted person, you know, he was toxic and that just it wasn't going to work. 

Elizabeth 

What was the process like for you though? So when you started speaking to your now husband, did you, said you kind of went ahead of the phone call a bit quicker than you would have done it like normally. But I know you were like in contact like three years before. So how did that relationship like develop and evolve and grow? 

Saima 

So yeah, I, again, I don't know if this is a visual impairment thing. It may not be, but I've seen other couples do this as well. So like one of my friends, when she met her, now husband as well. And I think things progressed with us very quickly because there's no visuals to go on. And because it was long distance in the sense that he, so he, he's, I'm in Birmingham and he lived in London and it wasn't like, you know, we could just pop on a and see each other every week. It wasn't like that. So we had to find other ways of staying connected. And it came quite easily to me. And I found that with some of the sighted people that I'd spoken to, it was always very difficult to maintain that connection. And I never quite understood why. Sometimes it was just because it wasn't, you know, anything in common. And other times it was just, you know, what do we talk about? And this with this one, it was more the opposite. where we had so many things to talk about, because I guess we had a lot in common. We come from similar, we happen to come from similar cultural backgrounds. It's just, you know, one of those things. And on top of that, the visual impairment and how people kind of perceived that, you know, I found it was so strange to me to speak with a guy who understood a lot of what I was saying, because, you know, it's like anything. You can't always separate aspects of your identity. They sort of all interweave, like for example, you know, the experiences of visually impaired people will vary from background to background. So as much as you might talk to another visually impaired person who has the same condition as you, their cultural background and their values and their upbringing would also affect how they perceive that. So with us, we had the two kind of going for us, we had, you know, similar backgrounds plus on top of that. similar health conditions. So it meant we had an awful lot in common. So for me, that was like, I remember even before we even went to the phone call stage and we were messaging and I thought, this is, this is, I don't know where this is going to go, but this is good. Like this is, I remember feeling like really, what's the word? Excited about where it was going to go, but also reassured, if that's even the right word, that finally this is like I'm actually making sense to somebody. Because I felt like a lot of the sighted people I spoke to, they would try to obviously empathize with where I was coming from, but there was a difference between that and actually really, really relating to it. And you can feel the difference when somebody really, really does resonate with what you're saying versus somebody who's trying to. And so, you know, that was a huge thing for me, for us. So we spoke A lot. We spoke about a lot of things and it wasn't, it was one of those, sometimes it would just be comfortable silence. We'd literally sit there on the phone doing our own thing, but just, it was just the fact that, okay, you're there. We would watch movies together over, you know, like FaceTime or whatever. That was always fun because you'd have to play, you'd have to make sure you press play at exactly the same time. So you watched some movie at the same time. We did a lot just to cut, you know, and it was, it was, Looking back at that, it was incredible that we managed to kind of really spin that out and make it work. Yeah, we did see each other from time to time, but it wasn't, it was essentially whenever we, he could come to Birmingham. So it wasn't like it happened very, very regularly. So I think a lot of the connection was built more online. Like I always say, you could literally, if you know, you could literally document our relationship because like it was all either text, a lot of it all, you know, these sort of really, really long audio calls. And then when we did meet up in person, it didn't feel strange. It wasn't like talking to a stranger because we built that connection. So it was built and it just kind of grew. So, I mean, COVID definitely had a part to play in that. So we got married towards the tail end of the COVID kind of restrictions, you know, very, very tail end. So that sort of threw a spanner in the works just in terms of where things stood. Well, my mental health wasn't the greatest during COVID. It just, I felt very isolated, very kind of, it felt like I couldn't do much. And that was when we were sort of trying to plan a wedding. So he proposed to me quite quickly. Well, I guess quite quickly in the conventional sense. He proposed six months, no, seven months after we actually met. which to some people would be like, and I know a lot of my friends were like, what are you doing? It's too soon. But the amount of time it took us to plan the wedding, it actually wasn't because we were still getting to know each other all of that time. And I knew I was never under, like I said yes, but I knew I wasn't under any pressure. If I needed more time, I could ask for more time. So, you know, that was that. But yeah, COVID was difficult because we couldn't do a lot. And it was like, okay, we need to find somewhere to live and do all this stuff. But because of the long distance, and I guess, and because of the fact that we both had a visual impairment, it was difficult to do those things. So that was kind of quite a strain, I suppose, on things. 

Elizabeth 

Yeah, definitely. And then I suppose not having the uncertainty of COVID. And I know that a lot of weddings were postponed during that time and they couldn't go ahead. And then even getting to see an apartment or something or a house, actually being able to go to a new place because of the restrictions on things to see if it's the right fit for you anyway in the 1st place was quite challenging. And I know a lot of people were doing like remote viewings, which doesn't work. for everyone. So that makes it really difficult. So you got married at a time where I guess there was a lot of uncertainty. So I can see how that really added to it and made it more challenging. 

Saima 

Yeah, I mean, like you said about viewing things, that was really difficult. Because again, I don't like, if I can do something myself, I will. But when it comes to, obviously when it comes to something like this, I physically cannot review an apartment or a house myself. there's no estate agent is going to tell you, yeah, there's damp and there's mould on the wall. You need someone with you. And so that was very difficult during COVID because I couldn't do it. He couldn't do it. We were very much reliant on the people around us. I was lucky in the sense that my family never, so I was expecting the whole you're marrying someone visually impaired, how's this going to work? I got a little bit of that, but it was very quickly nipped in the bud. So my mum basically told everyone to shut up kind of thing. She was like, don't be stupid. So people tried it on. And I think it was more extended family that tried it on and they sort of came home and tried to stir things up a little bit, you know, thinking they could rile my parents into kind of disagreeing and making things difficult, but it didn't really work. So I was fortunate in that sense. I had that support in place where everyone sort of said, and I think it was probably because of some of the other experiences I'd had with, speaking to guys. So I think people were sort of more relieved that I'd actually got to this place where I was sure about somebody because they'd seen obviously some of the shadow stuff that people had said, some of the stuff I'd been through, some of the people I'd spoken to. So I think it was more relief to them because obviously like this, you know, visual impairment, you know, the way my mom put it was, you know, how can, how on earth could I possibly look down on someone who's visually impaired? Like what kind of person would that make me? Because, you know, if any, we know, you know, we've got it. In fact, like what would that say about me as a person? because that would almost be like someone saying that to me. So she sort of was like, this is ridiculous. And if this is what works for you, then, this is what works. And I remember her having recently, she had the same conversation with somebody else. So we know somebody who's in the same, well, unfortunately, isn't getting the right support from his family. So by the sounds of it, he's got a girlfriend who, he's visually impaired himself and he's got a girlfriend who's visually impaired. And His family have basically said, no way, no how, it's not happening. He needs to go and find someone cited. It's not going to work. And the mother of the person who's saying all this stuff, I spoke to my mum. She spoke to her and my mum just sort of went, yeah, like, what are you talking about? That's ridiculous. Yeah. Like, why on earth? Because she's like, then, how are you viewing your own son if you're saying, you can't possibly marry someone who's visually impaired because they're lesser? Are you saying that your own child is? Like, sort of thing. And people don't, when you put it like that, they go and kind of go, no, Like, it just sort of shocks them a little bit. But it's an issue, it's a huge issue and it definitely needs to be tackled because it's affecting so many lives and so many people. 

Elizabeth 

Yeah. And like you said there, when you flip it that way and say, how do you view your own son? Like people just don't seem to think about it from that perspective and actually kind of question why they might be having those biases or thinking the way that they are, because it might be from some kind of, I don't know, fear. It could be some sort of societal thing that we are taught to think different ways about different people. But It's interesting that it's something that you say or that this woman was saying but she didn't even think for a second actually what I'm saying applies to my son equally as much as it does to this like to his partner. 

Saima 

And I think again... I don't know, I wasn't there for the conversation, but the way mum said it, I think she was sort of trying to ascertain, I think she sort of wanted mum to say, yeah, you know, don't do it because we've learned from it the hard way. Just by the way she was framing some of the questions, but that didn't really happen. My mum just went, yeah, you know, and again, it was pushed, you know, she sort of kept trying to push him to go abroad. And my mum said, you know, why on earth if he wants to go, but I'm not in any way bashing people who do that, by the way. That's, it's your, like, if people do it genuinely because they happen to have a connection with somebody who happens to be, you know, to not live in the UK, or, you know, they do it for, because they want to, that's not my issue. My issue is, you know, something like this where you're sort of saying, that's the only option for him. I just think that's awful. I know at least four people who are in their late 30s who are still at home because they, families have been, have sort of put it in their head and told them that, nobody here will accept you. And, essentially, if you're not going to go abroad, then you're stuck. And when I say people might think, well, why can't they just ignore their families? But it's not as simple as that because you're talking about years of somebody telling you this. It's like it's an emotional thing. So when somebody's literally putting it in your head, your own family are telling you day in, day out that this is the only option for you because, people here just won't accept you. At least if you're giving somebody a better life here, then, you know, they'll accept the fact that you've got a health condition. It's okay. They'll accept it because you're giving them something big in return. And when you're told that, it breaks you down and it's really easy to say, well, don't listen to them, do your own thing. Do you know what? But it's, It's I guess it's just years of and again, I'm so I'm grateful when I look around and I think sometimes I do think I really did beat the odds when I look around and see people, especially from the same sort of cultural background to me. And I'd love to meet more couples where people have married other people, people with health conditions, have married other people with health conditions because they seem to be few and far between from what I've seen. And I just I do look and I think, you know, I am very lucky. that I never experienced that. And a lot of what I did experience wasn't from my family. It was more just external stuff. So I had the support that I needed to get to where I needed to be. I could have easily been one of those people that was, you know, told constantly again and again and again, because it wasn't, you know, extended family or said it to my mum that, you know, you're going to have to take her, you're going to have to take her abroad. But my mum knew better than to even suggest that to me because my mum also had the mindset of why on earth do we need to do that? yes, if it's something I wanted, or like I said, I happened to build that connection, but why on earth do we need to do that for all the wrong reasons? So I'm very fortunate in that sense, especially when I see it around me all the time. 

Elizabeth 

Yeah, and in that situation, you could end up potentially in a marriage with someone who's not right for you, and it ends up being a really negative experience that you can often feel quite trapped in. 

Saima 

And it's not, it's not right for the person that's being, it's not right for anybody in that situation. And it's just, it's pushed. And the people, the heartbreaking thing is the people that I've seen it happen to are the people that you think were least likely to end up in those situations. The people that would say, you know, not me, no, I would never do that. But for whatever reason, they've been beaten down, broken down into doing these things. And it's awful. I know somebody, you know, who was, she just seemed the least likely person to do it. I just cannot imagine how that happened to her. When I heard the news, I was genuinely upset for her. And it's not someone I talked to, it's not someone that I, you know, I'm close friends with, but just knowing what I knew of her for that to happen, what on earth they said to convince her that was the right thing to do for her, I cannot imagine. But again, it's just a thing that you're lesser than somehow. 

Elizabeth 

And when you get told it over and over again, you get told it enough, you start to believe it. 

Saima 

You start to believe it. And you also, a lot of what I've heard from people is I didn't know there was another alternative because it depends on who your social circle is, who you're mixing with. Not everybody has the same access to independence or technology. You know, I know somebody quite well who is in a situation where, you know, parents and everybody encouraged independent living skills, I guess. So she never, visually impaired or her life, but never really learnt to kind of do things for herself in the sense that like, never sort of learnt to look after herself, I guess. And then obviously then there's advocating for yourself side of things and all of that. And then because you've sort of made her into somebody who is not, I guess, independent, in a sense of, she's not sort of confident in her own abilities. She's not going to question it when then you say to her, you know, how are you going to get married or how will you marry somebody who, you know, from here because you need so much looking after because you've made her into somebody that needs all this looking after, in a sense, because she's not encouraged her independence. And so when she met, I remember when she met me for the first time, it was in a professional context. And I asked her a simple question because it was a question on a form that we had to fill out to register her with the service that I was working with at the time. And I said, are you married? And she said, don't take the mick out of me. I said, what do you mean? She said, why would you ask me that she got really upset? I said, what is it that's upset you? And she said, how can, how, why, how could you possibly think that I would be married when I have no vision? And she truly believed, bear in mind, she was 33 at the time. So 33 years of her life. And she truly believed that was just so impossible for her that she thought I was taking the mic. And now, she's sort of she's sort of seen me and she's seen other people do it. But imagine 33 years of your life believing that future is so impossible, like it's not even something you can reach for, because that's what you've been told. 

Elizabeth 

Yeah, it's heartbreaking, isn't it? You think... people just assume that that's correct because that's what they've been taught. And I can like, we can understand why, but it is, it's, so, yeah, it's frustrating. And I think as well, you just don't see much representation of disabled people in relationships. It's just not, I think it's talked about more now, but I don't think it's talked about, well, I don't think it's talked about much. At all, really. 

Saima 

I mean, it definitely is talked about more. I think, though, that again, it depends on the community that you're socialising with, who you have access to. Again, it's like when I talked about access to work, it's a similar sort of thing. If you have access to the right support groups, you will have the right information given to you. And it's the same thing with this, isn't it? I saw friends, you know, date I saw them get into relationships and I knew that that was something I wanted for myself. So I pushed for it. I fought for it. I did what I had to do to get to where I needed to be because I had this. I had the support at home, but I also knew that it was possible for me to do that because I saw other people do it. But if you have never, and I went to a school for people with visually impaired and believe me, there was dating left, right and centre there, I can tell you. I never, ever thought that wouldn't be a possibility for me. Like it just never, it just never entered that, like my head that wouldn't happen because, I have, I've had hormones like everyone else. I went through the same teenage, stuff that everyone else goes through, crushes, all the rest of it. So, I remember like having my first crush and coming home and telling mum and she went, oh, okay, like just let me have my coffee. Don't tell me anything else. Like this is no. I think I was like 12 and she was like, Already? But she never said, that's never a possibility for you. it was never put in my head that it just never happened. But the fact that people are so isolated, that can happen, that they just don't know of any other people that experience those things, it's just, it is actually heartbreaking. 

Elizabeth 

Yeah, it is. It is. And I think that we highlighted there because you were around people who you saw it happening. You saw people having crushes, having relationships, and you could sort that dynamic in front of you. So you knew that was a possibility. If you're nothing, you were quite lucky in that you weren't really taught to think, oh, you can't have that. But some people who are quite isolated from that and don't have that dynamic. It must be really challenging. And I know that we don't really have schools now, as far as I'm aware, like there are like schools for the visually impaired left, I think. 

Saima 

They're sort of becoming less, what's the word? People are drifting away from them because I guess, again, funding cuts and all the rest of it. I mean, I can't speak for all parts of the country, but I can certainly speak for Birmingham and from what I know, that you know, the quality of support that we received. is miles, miles, miles better than what people are receiving now. I know of families going through it and children and what they're being taught is just not enough. That is definitely a huge factor. I think definitely work needs to be done with parents because as much as we say, well, you know, these people are adults, they're grown up, they can make their own decisions, but parents are still having that influence on their lives because the reality is, especially in today's economy, if you're you've got a health condition, you're going to you're probably less likely to move out early than someone who doesn't. I'm not, obviously people do and that's amazing, but just based on cost of living, economy, all these things. So because of that, if you're staying closer to your family, your support network, they're the ones that have the most influence on you. They're the ones that also need to be educated on what consensual, you know, healthy relationships look like for someone with a health condition. Because I do think, and this is something I will say and I will stress this, like this tendency to settle To accept less than is, and I'm not just talking about it in the extreme context that we talked about, with the whole going abroad thing, even, if you end up in a relationship with somebody from the same country, but there's always this expectation of, yeah, but they are looking after you. So, if they're doing something wrong, but it's like perceived as, yeah, but they're human, at the end of the day, if you left them, where would you be? You know, you're still made to feel like, I better stay because of what this person's doing for me. And that it's hugely toxic and it's awful for someone's self-esteem as well. That's another thing I've seen people go through. I know somebody's in a wheelchair and bless her, she's, you know, quite clearly unhappy. And her mum is very much like, okay, yeah, you could leave him, but then what you're going to do? Look, he's accepted you, hasn't he? He's married you, he's taken you on. So yes, he's got his flaws, but at the end of the day, you know, he's He's staying and that's awful because everyone has their flaws, fine, but ultimately you have just as much right to walk away as anybody else does. You have just as much right to make rash decisions and be impulsive and do all the wrong things. You know, that's part of life. Yeah, maybe it's the wrong decision for her to walk away. Maybe it's the right one. Ultimately, it has to be hers. 

Elizabeth 

Yeah, and then when you're getting people telling you, what are your options going to be if you choose to leave? That doesn't make you feel like you've got a choice because you think, well, I can't leave because I won't have, you know, I won't have a roof over my head or how will I support myself? So then you lose that autonomy in that relationship because you can't leave. So you can't really, I don't know, I guess in a sense, if you feel like you can't leave at all, it's almost hard to feel like you're an active participant in consenting to actually being in that relationship and that marriage. 

Saima 

Yeah, absolutely, yeah. And again, it's something I've seen so often. 

Elizabeth 

And I think it feeds into the dynamic a lot because of the power imbalance that can sometimes be there if you are relying on someone to take care of you. And especially with independence, and I try as much as possible to be as independent as I can be. It's important to me because I just like to feel that autonomy over my life. But there's been times when I've been less independent and times when I've been more independent. And I can feel like that shift and that dynamic. When I was a wheelchair user, I couldn't like, It always seems like strange to you, but the hospital, not all the doors had those buttons that you can press to open the door. So I'd have to wait for somebody to open the door for me. And just small things like that, like it just takes away that freedom of movement, more so than not being able to walk. It was more the inaccessibility of the building. But being in that kind of position of relying on other people, and particularly like if you're in a relationship, you might need to rely on your partner more if you have a health condition. And if you... 

Saima 

Yeah, and that's something I was very much aware of. And again, as I say, I was open to, sort of someone with health conditions, someone with not that just, I was open to either option. But I was very aware of the potential power imbalance of that. And I remember discussing it with my mum and saying that, look, at least, you know, we're on an equal footing in the sense that, Because, again, some of the things people said was, Oh, you're going to marry someone a VI. Who's going to drive you around? I went, Yeah, I can live with that. You know, there's ways of adapting, there's ways of problem solving, there's ways of doing things. I mean, we've been abroad, we've just come back from Sicily last month, went to Lanzarotti the year before. There's ways of doing things if you want to do those things. There's, you know, there's always, and I think when you problem solve together, you figure it out, but when one person is always taking the front seat. and it works for people and that's great, but there's always that risk of, okay, right, now I've married somebody sighted, okay, no, he doesn't have any health conditions whatsoever. The assumption will be, oh, well, he'll do it for you then, you know, if there's something that needs to be done. And that's not always, you know, the best option, because if you're relying on that, you know, he's an individual as well. 

Elizabeth 

Yeah. 

Saima 

And you know, he might just need a break or, you know, so I'm pregnant at the moment, so I'm six months pregnant. And I know for a fact that if I'd married someone sighted, it would be the case of, you take a total appointments, you do all. And obviously they might want to come anyway, but it would be the assumed thing that they would do. 

Elizabeth 

Yeah, it would just be assumed that would be what would have to happen. 

Saima 

Yeah, I just think we're on a, I just think we're on a more equal footing with whatever challenges we've faced because we're both experiencing them. It just makes life a little bit, a lot more equal. 

Elizabeth 

Yeah, and because you have that understanding. 

Saima 

Yeah. 

Elizabeth 

Yeah, that does make sense. And because I always think that's quite like that dynamic and because my little sister, she was disabled as well. And I always found it, it's like interesting, I found it harder to watch her suffer. Like for me to suffer myself and to have a hard day myself was like one thing, but seeing her have a hard day, even though I could empathize with her, I just felt like it was so much worse watching somebody I loved struggling versus struggling myself. 

Saima 

I mean, I guess that makes sense because it's just that outsider perspective, isn't it? You're always imagining what they're going through rather than experiencing yourself. And you sort of imagine the worst case scenario. That makes sense. 

Elizabeth 

Yeah, and that kind of like helpless feeling of like not being able to do anything. But yeah, I think there are a lot of dynamics when it comes into like relationships and disability, whether that's like a romantic relationship or not, particularly around like we've touched on today, like worth and think about how we perceive our own worth and how we can separate what we see as our worth from what other people push on us. And that is really hard to do when you're constantly being kind of told, oh, you know, you can't do this or that your worth is less. It's really difficult to create that safety within yourself and protect your own sense of self-worth when you're not, when you're constantly being hit with that cycle. 

Saima 

Yes. And again, that comes down to like, It's hard, when you're raising children, a lot of it comes from home, doesn't it? So, you know, you're not going to have a good sense of self-worth if these kind of ideas are being pushed at you. And it's like, you know, people don't even realise those ideas are harmful, but they're pushing them at you. And then that's, you know, where that, I guess that comes from. 

Elizabeth 

Yeah, I think so. And I think that's quite an important takeaway from this. because I don't know where like the last 40 minutes have gone, they're just like flown by. But from this like chat and our conversation is this how we are mindful of how we are talking to other people and talking about ourselves, like how we're mindful of what we kind of push ourselves to settle for and the importance of making sure that we do not settle and that we recognise our worth. But also that when we're supporting our family, our loved ones, our children, that we aren't teaching them that they need to settle or that we're not teaching them to question their own worth. 

Saima 

Yeah, absolutely. And I think, from my point of view now, thinking about having a child has put things into a huge perspective. Because again, and it's a cliche, but it's true, I wouldn't want my child to put up with something, like, if I don't want them to put up with it, then I probably shouldn't be putting up with it myself. 

Elizabeth 

Oh, that's so powerful. Yeah, absolutely. 

Saima 

Because, and you know, I've seen it happen and it's easy to say, well, yeah, I'm doing it for the sake of the child, but then ultimately, it's definitely going to affect that child in some way, shape or form. Now, I don't know if my child will have a health condition. I don't know if they won't, you know, but whether they do or not, that is hugely important because societal stuff out there is going to be out there. You know, it's an idealistic thing to think we can just change society like that. It doesn't quite work that way. You know, hopefully one day things will change and that's a complex issue in itself. But I think individually, if we can raise our children to have good self-esteem, and to have confidence enough to come to us and to make mistakes just like anybody else would make mistakes. I made mistakes, if I'd married the other guy, that certainly would have been a huge mistake. But ultimately, people make them that, it was never put to me that, oh, you made that mistake because you're visionally impaired, right? That was never a thing. I made the mistake because I made the mistake of just choosing somebody who wasn't right for me, but I quickly learned from it. I remember going through that and my family sort of saying, you know, we don't, they didn't like him. Straight off the bat, they didn't like him, and I sort of resisted that a little bit. I pushed back and, kind of dug my heels in a bit more. That was the sighted man, and they could have easily sat around and said, Oh, you know, but he's sighted, so stay with him, you know what I mean? Like, you know, he's going to look after you, but they didn't like him, and it was, you know, they were the ones that telling, you know, telling me this isn't, this isn't healthy, this isn't good, so I've been lucky in that sense. But, you know, I think it's important to allow You just have to make those mistakes because you're human. Like, relationships fail because they fail for everybody. People, online, people are shallow, but that's who they are, not who you are. You know, it's just separating that out, those experiences out from your worth as a person. 

Elizabeth 

Yeah, and I think that is a big thing about like separating experiences or even like, because we often associate our work with things like career, but separating actually careers from your worth as a person. Like, your worth is inherent and it is the same and it doesn't change because you're more or less successful. You always have the same amount of worth and it's not determined by other people's perceptions of you, but it is a challenging thing in our society and with the way that society runs. But I think we can hold on to that and we can feel that sense of security in ourselves and that we can feel comfortable in ourselves and who we are and we can do it. won't work all the time, but strongly enough, that we cannot be influenced by other people's perceptions of us. That's something I try and do, and that's something I try and embody. Because I know at least when I make choices, even if I make the wrong choice, and I make a lot of the wrong choices, I know that I'm doing it from myself in a sense of it's following my values and who I am as a person. 

Saima 

Yeah. 

Elizabeth 

And I feel like there's a strength in that and a kind of-- Absolutely. Yeah, something that just helps me. But it's not always-- it's not always easy. 

Saima 

No, of course not. And I think that's where support, good support structures come in to play. Just like anybody else, you need people around you, need friends around you. When I was looking online and going through all that, bear in mind, I was doing it for two years, you know, before we met. That was two years and I don't know if it's a long time. I needed people to talk about it with, I needed to be, you know, people to laugh about it with, some of the experiences were just funny, some were just draining, you know. And again, everybody needs that, so do we. So it's just, again, it's about, yeah, you need that reminder sometimes. 

Elizabeth 

Yeah, and there's space where people can talk about it openly and you can know that you're not alone in that journey. 

Saima 

Yeah, I mean, one thing I do wish is that I had somebody who'd been through it to talk about it with and I just never found that person when I was going through it. So I'm very like aware because it's not an isolating experience. But like you say, you know, when you've met someone face to face and when somebody's built a relationship based on someone face to face, it's the online experience is so different that it is important to talk about it and have that, you know, give yourself that time and that space to talk about it. 

Elizabeth 

Yeah, definitely. It's been interesting hearing your experience of that process online as well, because obviously I could just compare it to my parents in person. But yeah, I think that dynamic can be really challenging. And often I feel like in a message, like a text message, it's difficult to always convey meaning. So for me, like having like that actual voice to voice conversation, even just like on the phone, would help me, because at least then I would understand the tone and you kind of get a bit more of a feel for the person, because sometimes with text you can read it loads of different ways and think, or does it mean this, or does it mean that? 

Saima 

And again, classic thing, sometimes I did wonder whether people had their bios written for them, because you click that bio and think, oh wow, this person sounds amazing, and they're speaking, you think, did you write this? Are you sure? And it just didn't, it sort of didn't gel with the person. Like, And obviously sometimes that's just because of how people communicate. Some people, communicate perhaps through writing and some people, struggle with speaking, but sometimes it was so contrasting, it was funny. And you think, okay, yeah, this is why I definitely need to speak to a person to get a real sense of who they are. 

Elizabeth 

Yeah, absolutely. And see, like you said, like if they wrote that or someone did it for them. 

Saima 

Yeah. 

Elizabeth 

So you can perfectly script it as well if you're doing a lot of editing. Whereas when you're talking, it's just normal, like messy, normal, everyday conversation. 

Saima 

Yeah. And you're going to get a better sense of who they are as a person. Because, you know, first impressions and all that, people will try only for so long before you get a real sense of who they are. And you're going to get more of that sense when they're speaking to you. 

Elizabeth 

Yeah, absolutely. Well, thank you so much for coming on today. 

Saima 

Thank you. It's been really, really good. 

Elizabeth 

Yeah, it's been lovely and it's been really interesting to hear your experience. So thank you for that and coming back again for your annual appearance. 

Saima 

Yeah, that's it. 

Elizabeth 

To learn more about the project, check out the links in the description. And as always, thanks for listening. 

Please note this transcript is automatically generated and many contain errors.