The whole idea of change makes me want to vomit | Lived Experience of Dyscalculia
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Liz Herbert:Hello everybody. I'm really excited to welcome you to the Lived Experience of Lived Experience of Dyscalculia podcast series. I'm Liz Herbert. I'm an Associate Professor in the Department of Psychology and Human Development at the UCL Institute of Education.
Helen Williams:And I'm Helen Williams, and I'm a researcher at the Institute of Education.
Liz Herbert:So welcome. This podcast has been created as part of a Higher Education Innovation Fund knowledge exchange project, which is a bit of a mouthful, I have to say, in collaboration with our research partners, the Dyscalculia Network. So through in-depth conversations with adults with lived experience of dyscalculia, we've been exploring how this often misunderstood and under researched specific learning difficulty shapes everyday life, education, emotions and opportunities. And in this series, we really want to share the voices and insights of people whose experiences are too rarely heard, with the aim of raising awareness, challenging misconceptions and better informing support for adults with dyscalculia. So I'm really excited to say that this is our first podcast and in today's episode we'll be asking the question how does dyscalculia impact on the daily and practical challenges of everyday life?
Liz Herbert:Our research has shown that many adults face significant challenges navigating everyday tasks, especially financial challenges or time management challenges and even independent navigation. And in this conversation we're going to be hearing directly from people with lived experience about how dyscalculia shapes practical everyday daily activities, how it shapes workplace experiences and how their hopes for a society better adapted to their needs. So today we're really, really excited. We're so lucky. We're joined by Rose, and I'm gonna get them to say a little bit more about themselves, about why they're here, and what they're currently doing.
Liz Herbert:So hi, Rose. How are you doing today? How are you feeling?
Rose:Hi Liz. Thank you so much for having me. I'm really good. Thank you. How are you?
Liz Herbert:I'm great. It's been a long day Rose, but I'm really excited to do this podcast.
Rose:Good.
Liz Herbert:So yeah, tell us a little bit about yourself Rose.
Rose:Yeah. So currently, I'm working in a in a local theatre where I live as a class leader in drama, youth drama. And my role basically is to look out for the young people that are in the drama classes, organise, you know, what events they get to do, plays they get to participate in, looking over the other leaders who are doing drama classes as well. So it's a really lovely creative job. And then on the side of that, I also run my own little mini business as a character performer where I perform as various different characters for children's events and parties. So only last week, I was a bit of a rogue Willy Wonka, which was which was certainly interesting.
Rose:But yeah, they're both really fun jobs and I'm feel very lucky to have them because they don't really feel like jobs.
Liz Herbert:Gosh, I am so jealous. That just sounds like so much fun. So yeah. And it's it's really it's really sad that we don't get to see a picture of you dressed up as Willy Wonka. So anyway, maybe that's something you can we can share on our website afterwards.
Liz Herbert:Okay Rose, so yeah, now we're here to talk about dyscalculia today. So, know, a lot of our questions will kind of feed into your experiences, your lived experiences so that you can share those with us. So I won't ask any specific questions about that because I am going to pass on to my colleague Helen. And Helen is going to ask you some questions that relate to both our research, our recent research findings all about lived experience of dyscalculia. But you know, to find out about you personally, Rose.
Liz Herbert:So over to you, Helen.
Helen Williams:Thank you, Liz. Thank you for that lovely introduction. Rose, you've got a very interesting sounding job and I'm really pleased that you're able to join us in our discussion today about the challenges faced today to day living because to all intents and purposes, you sound like you've got a a great job, a great career, and there are absolutely no barriers or difficulties. However, as you will know, our research indicated that many, dyscalculic people face challenges with aspects of their day to day living. And I wonder if you can explain how dyscalculia affects your day to day life.
Rose:Absolutely. That's a really interesting point that you've made, where a lot of people would probably look at what I do for a living and think, you know, wow, she's got that all sorted, that's amazing. But a lot of, nearly all of my job, I don't do independently, you know, I'm 21, but it's mostly supported by my mom, particularly in terms of, you know, running my own business. We were big believers in focusing on what I can do rather than what I can't do, and so we focus on the fact that I like performing and I like working with young children. However, in terms of budgeting, buying costumes, and even travel, these are all things that I need to rely on somebody else for and that I need support in.
Rose:Even, you know, getting messages from people who want bookings, I need to double check with my mum or a family member just to make sure that I'm not saying yes to something that actually I'm not available for, and it's it's part of when you say day to day life as well, it can be small things that people don't think about, like how long, you know, a session is if I were to do a birthday party. If somebody tells me it's an hour long, I I can't picture how long an hour is in my mind. If people give me times, it just looks like a jumble of numbers, it doesn't really mean anything. So particularly in what I do for work, even though it might not look like it on the outside, I rely heavily on family actually to to get me through basic things.
Helen Williams:Okay. Thank you. You've given us a lot of, information there, and I just wonder whether we can pick up on on one or two things. You talked about a difficulty with with budget and with costumes and with travel and with making bookings, and you're you're you're highly reliant on your mum to help you. So, I just wondered long term, have you thought about how that might impact your life going forward?
Helen Williams:I mean, you're young at the moment, 21, but, you know, is your mum always going to be able to help you with this? And what strategies might you want to put in place to to mitigate that in the future, do you think?
Rose:Yeah. This is something that I've been thinking a lot about, particularly at the moment. Being in your twenties with dyscalculia looks very, very different from being a teenager or a child. You know, when you're in the school system, you've got teachers around you pointing you where to go, you've got a bell telling you where you've got to be and when, the lovely timetable that tells you when, what classes you go to, and then the minute you leave that system, you realise, oh, actually, this stuff, I I really struggle with this and I rely heavily on on a parent, you know. And in all honesty, I think I would probably, the best way to describe myself, because sometimes it's hard to kinda convey how my dyscalculia affects me, I would probably call myself number blind.
Rose:I I do have it really severe. I struggle with being able to even, you know, buy a pint of milk from the shops. I would struggle to learn how to to drive, you know, I I rely on my mom to read a bus timetable and make sure that I can catch up the right bus. So these are all big questions of how what would happen if I didn't have that support system and in all honesty, I'm not actually too sure. I think I would have to find some level of support, whether that be a friend or another adult or, you know, I think I even came across my mind, would I have to pay someone to do that for me, particularly if I run a business?
Rose:Because these are just things I I cannot do and I think I would and and and there is only so much that you can put in place to kinda help sometimes with these things, you know, so I think I think it would be a a struggle to think what life would look like a little bit, to be completely independent.
Helen Williams:Yeah. That's that's a really interesting observation. And again, you've given such a lot of insights though into the life of a dyscalculic adult. I was very struck by the fact that you said that when you're at school, you've got that very supportive environment with bells going off and teachers pointing you in the right direction. So thinking back to when you were at school, I just wonder, do you think it prepared you well for life beyond school?
Helen Williams:Did your teachers know that you had dyscalculia, for example, and did they give strategies to help you prepare for outside life?
Rose:Yeah. I think school was an interesting one because particularly primary school, I I think it was just in a time where people really, really didn't know what dyscalculia was or had never even heard of the term before and when it's first started cropping up that I I obviously was really struggling with maths, you know, I couldn't read a clock and I couldn't count money, all that sort of basic life skill stuff. I remember my primary school teacher saying to my mum that I was probably doing it for attention because there's no way that somebody could be this bad and be struggling this bad if it wasn't for attention. And then as I grew older, my mum actually put in the research and found the word, the term dyscalculia and kind of before I even had a diagnosis, because I was diagnosed when I was 18, so it was a year, I think a year after I've left school. So the tea a lot of the teachers, I think, were aware that I struggled with maths.
Rose:They knew the term dyscalculia, but in terms of support, I kind of just had to crack on with it, mainly because I don't I don't actually think they they overly knew what to do with it, particularly with exams. I think they were trying to give support in a way that they felt was was supportive, but probably I in a lot of ways, had to kind of find my own ways of dealing with it.
Helen Williams:I'm very struck by the fact that despite these difficulties, you've managed to to be successful, start your own business, and, you know, you've a lot about using maths actually. So you've obviously been able to confront any any fears or worries that you have. What about other employment? Before you started your own work, did you have another kind of job or role?
Rose:Yeah. Well, I was I was actually very lucky because I sort of struggled with the idea of leaving school and going straight into university, I just didn't feel comfortable with that. And I live in Dumfries And Galloway and there was an area, we, a sort of creative place called Moat Brae and it was a storytelling centre basically and it was, I basically went for an interview to do that just on a whim because I quite quite honestly, I have a lot of support from my family but I think even they were like, we're not quite sure what the next step is because even, you know, working on a reception or a till somewhere, you know, that that involves maths, but this role at Moat Brae was fantastic because the woman that was my manager actually worked with a lot of children with disabilities and learning disabilities, and she'd heard of my dyscalculia before, and so she was kind of the first person who knew how to deal with it, and if I, you know, because I usually make some sort of mathematical mistake that's probably really simple to somebody else, but she understood, oh, I know what that is, it's just her dyscalculia, and a lot of my role, they they focused more on the fact that I could do storytelling for children, I could do the tours, I could dress up in character and I would perform for families, and those are the things I could do and that's what they mainly focused on.
Rose:And then but then again, in terms of filling in a because I had to fill in a an invoice sheet and all that stuff, and again, I I I think my manager ended up having to do it for me because I just couldn't figure out what I was supposed to put down. I couldn't even I couldn't have even told anyone how much I was getting paid or how long I was working for, I just was completely in the dark about it. I was having a lovely time. So that was my was my first job and that kind of gave me a taste of, oh, actually, I can do this and I'm good at this and with support, I can actually do that for a living.
Helen Williams:Okay. So actually, that's a really important point I think about playing to your strengths and really looking for the strengths that you clearly have and really utilising those rather than focusing on on the differences. And it sounds like you had a really, um supportive employer. So one of the things that we're hoping to do through this podcast series is to raise awareness about dyscalculia for employers. And you say that your employer knew about dyscalculia or had heard of it?
Rose:Mhmm. Yes. Yes, she did. I think it helped because before she'd sort of become manager for the role that I was working in, she was actually brought into the centre to focus purely on children with learning disabilities and disabilities in general.
Rose:So she, it was actually brilliant because I've had a few job work interviews before after that, and nearly every single one I've told I've had to sort of say, I've got this kind of queelier because you can't you can't really lie about that, and every employer has gone, oh, I I've never heard of that, or or they have to, I think one Googled it during the interview because he'd never heard of it before. So she was the she was the first person who was like, oh, yeah, I know what that is, and and could support me without me even actually having to explain anything, which was brilliant.
Helen Williams:That's that's great. Thank you. And what message do you think you would want to send out to employers, and not just on your behalf, but on behalf of fellow Discalculics?
Rose:I think that the key thing that employers need to kind of understand is it's it's okay to be, you know, told a term or, you know, have it in a, you know, someone ticked a box and they can see, alright, they've got dyscalculia. And I think that sometimes because, you know, they're allowing you to have an interview and they almost feel like they've sometimes checked a box because, you know, you know, it's alright, we will employ you even though you've got dyscalculia and that's brilliant. But I think it's sometimes understanding that dyscalculia is a spectrum, people deal with it in a very different way, For example, mine is quite severe. I have a friend who's also got dyscalculia who who can read, you know, a digital clock can do that, but, you know, struggles with it a little bit. So it's all a spectrum.
Rose:So I would say the best thing to do is listen to the person you've employed and if you genuinely want to support them and give them their best shot in that role, I think the best thing you can do is sit down with them and have a meeting and say, right, what is it exactly that you that you struggle with? Even if it's like a a bullet point by bullet point, what is it that you that you cannot do? Just so that you can have it in your in your mind because there's been a few, you know, roles that I've gone to where people have said they would support me but then not actually gone and asked me what it is that I struggle with, and then I end up struggling with it, and then they go, oh, but you never told me. So I think the best thing to do is act is really communicate with the person with dyscalculia, so that they can have the most seamless process possible when doing that job.
Helen Williams:Okay, that's really helpful. So really, it's about a transition into a job, an induction period, where both the employer and the employee really get to know one another. And probably also picking up an earlier point that you made about playing to people's strengths. So, knowing that people with dyscalculia do have huge strengths and really getting them to focus on their strengths rather than on the difficulties that they have. Okay.
Helen Williams:I'm just going to go back to something you mentioned earlier on. I'm just thinking about adaptations in the workplace again, and thinking about how society could be better adapted to the needs of discalculated adults. Lots of the participants in our research mentioned this as a particular issue. And you mentioned difficulties with driving, with telling the time, and with using timetables. So, do you think there are implications for wider society and how we might adapt to the needs of dyscalculic people?
Rose:Yeah. I think there is a long way to go in actually understanding how, you know, these day to day things can be a real a real struggle for people with dyscalculia. I remember there being a point where, you know, me and my family had to have a conversation about what was going to happen when I left school because they just couldn't think how how how can this how can she be employed? And and there's always the concern of, you know, being able to pay for things, being able to read a clock and time things and and like I see, like you said before, like, knowing how to drive, that's something that I will probably always really struggle with or maybe even never be able to really do because it's just, you know, because I struggle reading signs or I I struggle with distancing, that's that's another thing people don't know about dyscalculia, sequencing and distancing, knowing months of the year in order, you know, it's not even always just numbers. So I think I think a thing that wider society could probably look at is to really, I mean, something like this podcast is fantastic, really, you know, educate yourselves on it fully, listen to people with dyscalculia, you know, I have a few friends who just assumed that when I say I have it, they go, oh, well, she's just, you know, she's just jumbly with numbers and don't realise that it's actually a lot more severe than that, so and I think take on board how can I make this easier for a person, you know, one of my friends figured out that the length of time, I think my lunch break was, was the same amount of time as like so many Taylor Swift songs?
Rose:So if I listened to so many Taylor Swift songs, I would know that was my lunch break and I could go back and do it. So it's it's tiny things like that that that are so brilliant and and really thoughtful, and I think I think that would be brilliant if wider society kinda went went in with that.
Helen Williams:Yeah. That's a lovely strategy. I I really like that. And thinking about the long term impact, thinking about education, for example. So you when you were at school, you said that largely your teachers supported you and were aware that you had difficulties and a structured environment helped.
Helen Williams:Do you think there are some possible impacts on the way that we support teachers in learning about dyscalculia and strategies to help students, particularly preparing them for the life outside of school?
Rose:Yeah, absolutely. I think I think it's a real shame because there were a lot of teachers that I had that wanted to support me, but honestly just didn't know how, and I can't blame them because if you if you're not told what to do, how can you how can you know? And if you're dealing with a child or young person that's, you know, that cannot read a clock and cannot understand money, and I even I remember in home ec, I kept baking all like, burning all of my baking because I couldn't work an oven and and and they were like, oh, what do we do? And, you know, because it's not it's not described to them. And I remember when I went for my diagnosis and they were talking about my exams and how obviously when you do an exam, it's timed, and the teachers were trying to figure out how that would work for me because it was a bit of an unfair advantage.
Rose:I can't tell the time, I can't measure time in my head, so if someone tells me that question, you can spend twelve minutes on that question, I I don't know how long that is. So the the, you know, they give me I remember they used to give me like an egg timer to kind of figure it out or sometimes they'd, you know, cut I remember there was one technique where a teacher would come in my ear and say, you've got ten minutes left, but I remember thinking, I don't know how long ten minutes is, this doesn't help me, and it wasn't their fault. So, and then later when I got my diagnosis, the woman said, oh, that that shouldn't have happened at all, you shouldn't have had a timed exam, and, you know, like, actually, it's it's, you know, if you're diagnosed dyscalculia, you'd exam should not be timed at all and the teachers didn't know that. So, I think it's really important that that be something, you know, teacher training to get them to understand it more so that it's also that they can do their their job as best they can.
Helen Williams:Yeah. Thank you. We're going to pick that up in more detail in one of our later podcasts in this series, but I was just interested in in your perceptions on the preparation for life outside of school really because I I again, I'm not sure that, you know, as an ex teacher myself, you know, that we, as a profession, are necessarily very aware of it, so I was just interested in your insights there. Thank you. And is there anything else about work or the daily challenges of dyscalculia that you'd like to share with us?
Helen Williams:We're getting near the end now, so anything else that you feel you would like to share that we haven't already heard?
Rose:Yeah. I think that just being an adult with dyscalculia, obviously, is is really interesting. I can see things every day. I think it's brilliant to see how much people are starting to understand it more, starting to recognise it more, and are more willing to support people with it as well, which is fantastic and really good for, you know, our confidence as well, you know, makes you feel capable of doing things and I think for any young person or adult with dyscalculia, I feel one of the things that helped me most is focusing on what you can do, what you are good at, because actually, I found that because of my dyscalculia, it's made me incredibly creative, which I wouldn't be without dyscalculia. So don't look it as as a thing that makes you, you know, as a as a downward thing from other people.
Rose:Just focus on what you can do, and it makes you feel a lot more okay about it.
Helen Williams:Great. That's really good because that came through very strongly on our research that lots of participants said to me, how creative they were. So actually, that's that's a really good, point to leave on. Liz, is there anything else that you'd like to come in with before we
Liz Herbert:Yeah. If that's okay. I've just just been thinking about what you've been saying, Rose, and I'm just thinking you said so much about the workplace and and how you've kind of adapted and and you've been so kind of strong in sort of going to your workplace and explaining your needs. I know for a lot of adults with dyscalculia that that may not be that easy, but I was also thinking about the social aspects of those kind of daily challenges that you may face. So, you know, when you're when I'm thinking of Rose's life, you getting up, maybe you go to the gym, maybe you you go out with your friends in the evening.
Liz Herbert:Is is there any kind of challenges you face with the kind of social aspects? Because, you know, that's a big part of our our daily life, isn't it?
Rose:Yeah. Oh, yeah. Absolutely. I mean, to be honest, by the way, you made me sound you made me sound very fabulous going to the gym. My goodness.
Liz Herbert:In an ideal world.
Rose:Yeah, absolutely. I do that every day. Now, think that for me personally, actually, and it's something because I it's all I've ever known, I'm sort of used to it by now, but I have so many interactions that are so cringey or embarrassing, like, you know, like, getting the time wrong, like, I there was one session that I was booked for at a school, it was to do a craft session at a school and I came and I was all in costume and everything was great and the teacher looked at me and she went, you're an hour late and I got the time and I was like, oh, no. And there was nothing I could do about it and it's just like tiny things like that or my my work, I remember from from my from my first job that I had to do, we had to get supplies from shops to do craft workshops and creative workshops and they would give me cash from the petty cash tin and I wasn't allowed to use my credit card and it and I and I hate to this day,
Rose:I will not use cash in a shop,
Rose:it just gives me so much anxiety. I can't even, like, explain it to you. The the whole idea of change and no, it makes me want to vomit. So, yeah, it's like tiny things like that, just day to day life that I think it just, you know, you can be absolutely fine and feel really confident about yourself and then you can just have one thing that just really knocks your confidence and it can be the most random thing as well.
Liz Herbert:Now, how about if you went for, like, you know, lunch with your friends or coffee and and you had to split a bill, I mean, what how do you kind of approach I mean, I'm guessing you, you know, you're you're open with your friends about being dyscalculic, but
Rose:Yeah. No. Absolutely. I mean, they all know. Mainly because most of my friends are work friends, so, like, I remember telling them at the beginning and then slowly that I think it's when really when you hang out with someone with dyscalculia because, you know, it's almost a given, you get to realise how they how their brain works just naturally, and I think that, like, things like, you know, going for dinner and and like birthday dinners and things, they just already know not to include me in that conversation.
Rose:They just don't bother because I I just sort of sit quietly and just let them get on with it, which is
Rose:Yeah. This is your problem
Rose:because they know I'll pay but I just trust that they're, you know, doing the right thing, which they obviously are. But moments like that, I actually really, you know, I feel really grateful for my friends because they never make me feel like an idiot as well, they just sort of crack on with it.
Helen Williams:Brilliant. I wonder if I can just come back in there, Liz, and pick up one thing again. You're obviously highly competent and confident adult. Do you think that there are some maybe safeguarding implications for adults that that might not have social skills in terms of maybe being taken advantage of? I was just thinking as you were talking about, you know, not being able to handle the the money, for example, and relying on people.
Helen Williams:Do you think there are or do you know of any situations where people have been taken advantage of?
Rose:Yeah. That's a really good question. I don't know of any situations, I've never heard or seen of that personally, but I can imagine that it definitely happens. I think one of the interesting things about me, and it sounds very big headed, but I don't necessarily look or sound like somebody that that has that struggles with maths as badly as I do, which I think is why sometimes people don't take when I say I have dyscalculia, they don't take it always as seriously, just because I don't think they ever think it's as bad as it is. But I can totally see how because you're putting a lot of trust into people all the time to make sure that they're doing the right thing because you have no other choice as well, you know, in things like pay splitting a bill, you you it's not like you can, well, I'll give it a go this time, it's it's just something you can't do and I can imagine that lots of I'm very, very fortunate to have a family that support me and that I know I can trust but that's not the case for everybody and I can only imagine that that must definitely happen, people being taken advantage of definitely.
Helen Williams:So, again, I'm thinking there's a societal and maybe an educational role in giving young people the skills to be maybe more assertive and to kind of know their rights. I can see that that might be something to pick up on.
Liz Herbert:And I think as well, Helen and Rose, it's like when we know that dyscalculia often co- occurs with other specific learning difficulties like dyslexia and oral language difficulties and if you have a language difficulty, I mean you're very you're so articulate Rose, yet some some of those kind of challenges may make it even more difficult if if there's those co-occurring difficulties.
Rose:Absolutely. Yeah. I mean, I'd like you say, I've got I have actually also got dyslexia, and we're looking into trying to get me an an autism diagnosis as well. So, yeah, there's I think that's the other thing people don't realise is that dyscalculia definitely comes in pairs. It's it's very rare that it's just on its own, which is even, you know, even more important that it's brought into wider society, because it's not just the dyscalculia people are struggling with, it's usually something else as well.
Liz Herbert:Absolutely, absolutely, and that tends to be the norm rather than be an occasional thing, where
Helen Williams:And again, that was borne out by both our research and in the general research, is that it does often co occur with other difficulties, yeah.
Liz Herbert:Okay, so we've been so lucky to have Rose here today and we just want to thank you Rose for being so honest, so authentic and sharing all these experiences with us. And we know not all your experiences have been easy ones. So, yeah, absolutely brilliant to have you here today, and I just wanted to know if you had anything you wanted to ask us or anything you wanted to share before we we come to the end of the podcast.
Rose:No. I just wanted to say thank you so much for having me. It's been amazing. I think this podcast is gonna be brilliant and so interesting for other people to listen to. Yeah.
Rose:And just thank you so much for having me.
Helen Williams:You're very welcome. Yeah.
Liz Herbert:Very welcome. And I wanna say thank you to Helen as well and to UCL to IOE UCL for sharing this podcast for us and we we hope we get lots of listeners because we think it's really important. So, yes. So thank you for joining us today for this conversation on daily life with dyscalculia, and your insights, Rose, have really helped to illuminate the realities that many adults face and highlight the need for greater awareness and support across society. So if anybody listening would like to know more, so do check out the links in the episode notes.
Liz Herbert:If you've enjoyed this episode, do check out more podcasts from the IOE. Just search IOE Insights and check out the Dyscalculia Network on LinkedIn who have been our research partners. And a quick favour before you go, if you're listening on Apple or Spotify, we'd really appreciate it if you could give the IOE Insights podcast a rating. Five stars would, of course, be brilliant, but you don't have to do that. And that will help us to reach more people who may be interested in hearing about the IOE.
Liz Herbert:So I'm Liz Herbert.
Helen Williams:And I'm Helen Williams. Thanks to Rose again and thank you all for listening today. Thank you.
Liz Herbert:And we can be contacted via our LinkedIn profiles, all which will be shared in the episode notes. So thanks everybody and we'll see you for our second podcast soon.
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