Freya and Mabel - Innovating Design Solutions for Misophonia
Transcript
Adeel [0:01]: Welcome to the Misophonia Podcast. This is Season 7, Episode 3. My name's Adeel Ahmad, and I have Misophonia. This week, I'm talking to Freya and Mabel, two grad students at the University of Bristol, who did their final project on human-centered design practices to help cope with Misophonia. I actually have a link in the show notes to the book they are making freely available, which is a toolkit. for incorporating misophonia awareness into any design process. We also talk a bit about Freya's experience having misophonia and Mabel's interest in misophonia as someone who does not actually have it. This is a super interesting approach to studying misophonia because it comes from an angle of how can the world innovate to better accommodate people rather than the usual research focus, which seems to be around understanding the person, changing the person with misophonia. After the show, let me know what you think. You can reach out by email at hello at misophoniapodcast.com or just hit me up on Instagram or Facebook at Misophonia Podcast. And please do try to leave a quick review or rating wherever you listen to this show. It helps drive this up in the algorithms, which in turn reaches more misophones. This episode is sponsored by a personal journaling app that I developed called Basil, B-A-S-A-L. Basil is an app that provides AI-powered insights into your journal entries and guides you with new writing prompts based on those insights. You can even explore many different therapy approaches and philosophies. It's available on iOS and Android. Check the show notes or go to hellobazel.com. Also, thanks for the incredible ongoing support of our Patreon supporters. If you feel like contributing, you can read all about the various levels at patreon.com slash misophonia podcast. All right, now here's my conversation with Freya and Mabel. Mabel and Freya, welcome to the podcast. Great to finally have you both here.
Freya [2:07]: Thank you. Thank you very much.
Adeel [2:09]: So, well, I guess I think I was in contact with Freya first, maybe just to kind of by way of introduction, Freya, do you want to just tell us a little bit about yourself?
Freya [2:18]: Yeah, for sure. So my name's Freya. I just finished my four year master's degree at University of Bristol and that was in management with innovation. And it was through the innovation part of my degree that we did this project and also through the innovation part of the degree that I met Mabel. So, yeah. Yeah. So I studied the innovation course as well. But I also specialize in anthropology. So we're both social scientists, but just kind of with different skills and those kinds of things.
Adeel [2:58]: Yeah, I love that. I had an engineering degree, but anthropology was one of the few electives we were allowed to take. I took anthropology, so I'm very fascinated by that topic. And Freya, I believe you have misophonia, Mabel does not, or did I get that reversed?
Freya [3:16]: Yes, that's correct.
Adeel [3:18]: Okay, cool. Well, I guess, yeah, let's maybe just jump right into the... Eventually, maybe we'll get into some of that background and whatnot, but I'm sure folks would love to hear about the project. I talked to Freya a little bit before, I think, to help maybe with the project, but... or help think about it. But yeah, do you want to talk about that? And I'm thinking the results came out as well, or at least the analysis. However you both want to begin that maybe.
Freya [3:45]: Yeah, it was a long project, so there's a lot to talk about. But I guess maybe it's good to start with where we started with the project. So as you rightly said, I do stuff with misophonia myself. And Mabel and I, our degree course enables us to explore uh kind of issues in the world and problems that we'd like to solve and so this year i decided that i would like to focus on solving problems around misophonia and that's kind of where the project was born um with this idea of looking at misophonia through a slightly different lens to what's out there at the moment um using human centered and more design thinking related methods And yeah, so Mabel was really keen to join the project. Yeah, I was, I guess, I'd never heard of it before, to be honest, starting the project. I'd never heard what misophonia was or understood anything about it. But hearing it from Freya, I was really interested in how it seemed to be a very individual kind of response to the condition. but it was socially generated. So that was quite an interesting conversation between both of those things together. And starting from a place of knowing nothing was just quite exciting, especially as the research was so minimal. There was just an opportunity to go in quite a few different directions with that.
Adeel [5:20]: Right. And, um, right. So, I mean, Miss plenty of research has really taken off in the last few years. I'm sure, you know, you're talking to Chris and, um, he knows a lot about that and it's just been pretty exciting. Uh, but yeah, I mean, so the research has been started. It's, you know, there are a few different avenues and, uh, it seems like you guys wanted to go with a more unique approach. Uh, do you want to talk about that approach and kind of what the idea was behind the project?
Freya [5:47]: Yeah, for sure. Um, so. With innovation, it's a human-centered design approach. And so there seemed to be this dichotomy in research about how individuals were adapting to the world versus how the world might be able to adapt to individuals. And it was definitely biased in that first direction. So treatments and therapies and things like that, instead of looking at how we could actually adapt the types of worlds that we were living in and the situations to just suit other people with more sensitive needs. And so that's where our user-centered approach came in and looking at actually... silent sufferer and understanding them with um with compassion and with a i guess a world's thinking a systems thinking approach that took um more than just a scientific kind of um lens um into consideration yeah that's really interesting that you said uh that the the dichotomy between um
Adeel [6:55]: the person adjusting to the world versus what can we what little things simple things can we do in the world to maybe help accommodate suffer um i think that's that's a i think common thing with a lot of these a lot of disorders is like the first thing is to kind of almost blame the um the person who's suffering or put it all on them uh and eventually with awareness and research that shifts a little bit and this is funny we're still in the very early stages
Freya [7:21]: Yeah, I think a lot of the conversations we've had with various people have really been talking about not seeing it as a fault in a person, seeing it as a kind of strength and just something that makes us a bit different. And I think it's the idea that we really wanted to do something that would make people feel empowered rather than just sort of saying, oh, you can go away and take this medication or do this treatment, like something that actually makes them feel seen and appreciated.
Adeel [7:51]: a sort of just kind of open society to them in a way yeah i'm reading it this might be a tangent but i'm reading a book called uh architecture of the eyes or something it's about how recently um it's only recently that society is the sense that that is most um emphasized in current society are the eyes and they're associated with more thinking and so but in the past it was with especially with oral traditions it was hearing that was more kind of honored and um and so there's a kind of an ocular focus on on in current society which is kind of like shoving all these other senses down in in priority so um i don't know maybe it's like the anthropological perspective but i find that kind of kind of fascinating and kind of wonder if that's um one way our our hearing is just not maybe as in touch with the world and is able to process it no i think that's a really interesting point i think um
Freya [8:51]: So one of my lecturers who studies linguistical anthropology, her work is basically based in, oh gosh, no, it's Tibet. So her work's based in Tibet and she works with people who talk through sign language. and how it's an act of kind of political dissonance. So her work is really interesting in terms of when you don't have access to part of your senses, what then becomes important and how politicised that can be as a silent act. It's fascinating work against propaganda and control And, yeah, really interesting work as well. So, yeah, definitely the senses are a key part of anthropology, anthropological work and, of course, in everyday life.
Adeel [9:48]: Yeah. I just hadn't heard about, like, senses being emphasized differently throughout history. It's just a very interesting concept. Yeah, but coming back to the project, what... I guess there was a day, I think last time we talked, we were a couple days away from the big day that you were going to run your experience and whatnot. So I was very curious to hear how things turned out. It sounds like they turned out well, but yeah, I'd love to hear how that went, what happened.
Freya [10:21]: Yeah, so there was a lot of different research we did, but the particular thing that we were building up to when we last spoke was our participatory design workshops. And that was essentially, we just got a group of, was it eight people in a room with misophonia and we set them the challenge of coming up with ideas and solutions that could help. uh for the day-to-day lives of people with misophonia and we did this through like a range of activities that we spent quite a while preparing so for example one of them was like come up with the worst possible idea and then we sort of flip it on its head and work back from that and we also sort of gave them uh products commonly associated with triggers and said you've got a minute redesign this product and how could you make it better so just a lot of these activities to really get people thinking and a lot of the things an individual might not have suffered with themselves so it was that idea of also opening them up to the world of misophonia and because most of the people hadn't met anyone who suffered with misophonia before it was a really like eye-opening experience to expand not just our kind of perspectives but help other people to expand their perspectives as well and i think the empathy flow like flowing in that room was incredible people were so supportive yeah i think that empathy became really important when they were doing collaborative work and actually seeing the value in creating ideas for each other and seeing that as a wider network of how change could start to be kind of investigated and future ways to get involved with things like this I think very underplays it when we say we got a group of people together it was like it was a big it was a big deal at the time I think it was a real like rush of emotion when we actually got got to do it and um could see our work in action um but yeah so we went through you know recruiting people coming up with our activities and testing them out um but it was a really um it was a really pivotal activity that we did for our project yeah that's something it reminds me of the convention the misophonia conventions whenever you get a bunch of people with misophonia in real life we may have talked about this before but like there is that empathy that that somehow just kind of uh
Adeel [12:59]: reduce it for me at least kind of reduces me thinking about triggers because we just I just know I'm around other people who even if they trigger me now there are some people who will trigger me to the point where I can't I can't get over it but but generally the the reaction is lower because I know that I could just say something and that person would understand and we are obviously thinking about each other so that is kind of powerful but we never got to the point like it's the other thing in your project where We're actually actively working on possible mitigation and redesigning products together. We're usually just listening to a lecture or we're just having beers or something. So, um, I would love to hear about like, what are some of these, were there, you know, kind of interest, particularly interesting designs or coping, new coping methods. Cause I mean, even right now, when people ask me coping methods, I say headphones, leave a room, leave a room, nothing particularly creative. I'm curious kind of what you guys, um, learned. what was created?
Freya [13:59]: Yeah, there was a lot of different solutions that were come up with. I mean, we tried to kind of give people a bit of guidance. Obviously, if we just went in and said, Oh, you know, come up with an idea, which would have been a bit of a nightmare. So a lot of our solutions were based around particular environments, as that was something we've been quite focused on. And so, for example, we did sort of ideation activities around cinemas or around public transport. And I remember there was one to do with like private cinema rooms. That was quite fun. Like the idea that you could have a little party room, just you and a couple of friends where you don't have to deal with other people's noise. Just you're kind of a controlled environment.
Adeel [14:49]: Yeah. Kind of like a, like a living room, but kind of like a karaoke room basically.
Freya [14:53]: Yeah.
Adeel [14:53]: Basically. Yeah.
Freya [14:56]: The idea of someone serving you was one of the things that kept coming up. It was like you'd have a... These were more of the silly ideas, less like coping, but more in an ideal world, what would be great, and it would be someone or something or some object that could speak for you and filter out certain noises. So we were... So say you'd look at headphones and you'd... How could you make them even better for someone with misophonia? And they were saying, well... You could train it or you could type in or tell it exactly the exact sounds that would trigger you and it would tell you if they were coming up or it would automatically filter them. They were quite interesting, fun ideas that seem really futuristic. And then you look at how you can kind of train AI.
Adeel [15:45]: to watch for certain things and you think it's not too far off yeah I know I mean you know in the near future it's come up in interviews though I've talked about that idea and there are people actually actively I think working on something like that where in real kind of like because that's what noise cancelling does it's listening and then also inverting the signal and then inverting the signal of the you know the background noises so that then you don't hear it cancels out so there's the idea of possibly doing that in real time with the uh learning the signature of trigger sounds and inverting them to cancel out how's it going through your ear um yeah we had a few ideas yeah we had a few ideas as well around um like food packaging and stuff like that yes common issue right yeah we have in
Freya [16:36]: the UK, I'm not sure if you have it in the US, but we have a crisp called Pringles and they basically come in a long... Yes, I'm aware. Yes, sorry.
Adeel [16:45]: No, no, I mean, yes, we've all suffered hearing other people accentuate their Pringles.
Freya [16:54]: Yes, but the great thing about Pringles is they come in a lovely cardboard tube. Right. So the packaging doesn't rustle so much. So a lot of the ideas were around kind of almost preventative packaging because often the eating noises can be a big trigger, but sometimes it's actually the rustle that really gets you before the eating noise almost. So we had a few ideas around how you might modify food packaging to prevent that, which is really interesting. Or even from, sorry, just even from like a trademarking point of view, how good food stamps you get I'm sure in America as well I know in the UK we also have specific packaging that is it's meant to be her majesty or be his majesty now approved So you have certain brands and they get a royal stamp. And imagine if you could do that with like a misophonia, you get a misophonia stamp.
Adeel [17:54]: Yeah, like organic or halal or something like that. Exactly, exactly. So there is like, His Majesty actually approves, like there is a stamp and the royal family gets money for having their...
Freya [18:08]: I don't think the royal family gets money. I mean, it's possible. I don't, I'm not too biased up on that precisely, but it extends from like shoe polish to crisps.
Adeel [18:19]: Okay.
Freya [18:20]: Yeah. And it's like, it's like a mark of approval. Um, but it's, that's, that's not a new concept, but it's just, how could you replace that with, with something, somebody else.
Adeel [18:30]: Something actually useful. Okay. interesting um and uh well i guess um so i guess what was the reaction of the um of the people who were participating was it just like um was it hard to get them to participate or was it just like a fountain of energy and yeah it it varied um i think people at first were kind of introverted right you know whoever's playing was definitely get a bunch of them together
Freya [19:00]: Definitely. I mean, one instance, a bit off a tangent, but I think it's quite a funny little anecdote.
Adeel [19:07]: Nothing could be more of a tangent than His Majesty's Pringles.
Freya [19:12]: A little, well, not the same as that, but when it came to kind of a little break time and people got a little bit hungry, we were in quite a big room and people went off literally to every corner of this whole room and ate in a corner. And it was probably, it's like subtle things like that. And then one of our other lecturers came in because there was an event around the corner presenting us with a whole tray of sandwiches. And we all had like a little silent chuckle to ourselves. So the energy was not, you know, it wasn't really loud and like... excitable but we were all kind of quietly quite confident and it felt quite safe and it felt it felt like no one had experienced doing these creative kind of wacky experiments before so you know some people weren't that confident with drawing but you were on a table opposite someone else and you kind of you didn't even have time to think about it And that can be really helpful sometimes. You just present it with something and you just have to go for it. Definitely some activities were more popular than others. I think I would say almost calling out ideas. So things like the best and worst ideas got the best reception and they facilitated the most conversations, which I guess was a bit surprising compared to paired things where you might be journey mapping an event together um i guess people were encouraged to um have to share a bit more about their personal lives whereas with you know whole group exercises maybe there was a bit more security and numbers and shared triggers that people could pipe up and say oh yeah me too i felt like that or oh i actually just use this type of headphone or i go into this type of space and so i think those work best i don't know if you'd agree for One of the things that we found with the workshop was there was kind of an element that certainly I was kind of anticipating other people in the room's triggers. So obviously as an organizer of the event, you want everyone to feel safe and have like a really good time and stuff. But there was this element of really not quite knowing what individuals triggers were. We didn't sort of make them declare them or anything. ask if there was any accommodations they would like to be made. We didn't necessarily have many requests in that regard. But definitely, I certainly was kind of trying to read the room a lot kind of anticipating things and when we collected some feedback at the end, I think other people also struggled a bit with not knowing what other people's triggers were because they obviously would try their best to just avoid any sort of triggering noises. But obviously there's going to be, it's really hard to do that constantly. And I think they sort of felt a little bit overwhelmed by the fact that they might not be able to prevent someone else feeling triggered.
Adeel [22:35]: Yeah. That's interesting. That is kind of similar, I guess, similar to a convention. I mean, once we start talking to people, we feel comfortable, but there is that initial people kind of tiptoeing around the room, um, not wanting to trigger, trigger anybody, but that at some point for most, uh, for many people that kind of subsides a little bit once, once, uh, we've kind of seen that we're all, we're all friends and we kind of get each other. Yeah, definitely. So I guess, um, So it sounds like the workshop was one part of the project. Was there, you want to talk about other parts of the project?
Freya [23:11]: Yeah. So we also ran a meta-analysis previous to doing the participatory workshop, basically to prove our hypothesis that there were social solutions lacking from academia. And so we looked at 166 projects. literature papers all containing the words misophonia in the title from 2012 up until 2022 Christmas time so the end of the year and found that only six papers actually provided a social or environmental solution that prioritized adapting a world for a person as opposed to individual adapting for their own environment and basically so from there that's I guess where we kick-started this idea that we could have an influence by doing a participatory workshop but that was quite a key moment for us and to confirm that in a way that made sense to academia. Um, as opposed to just using our own criteria, we actually went straight to the source and tried to, um, make sure that it was very clear, you know, in the, in the methods that we were using, that that was a rigorous way of, of saying that this is, this is what's missing and here's how we could fill that gap.
Adeel [24:38]: Right. Uh, yeah, we had, uh, Olivia and Unibar on, on the podcast who did it. We've done a master's, I guess, on, uh, misophonia kind of in the workplace and kind of what could be done to kind of help accommodate misophonia in the workplace. So, you know, people come on who are students, so they're asked about student accommodations, people obviously in the workplace talk about open office environments. Did you focus on any one type of environment or was it kind of like looking for possible solutions to any and all of them?
Freya [25:12]: Yeah, I think we had elements of focus on different environments throughout the project. Very early in the project, we conducted a rapid prototype in a theatre. So we produced a sonic map, which essentially would track the performance and potential triggering noises throughout that performance. And we handed it out to audience members. And we got some really good feedback from that. that was something at one point we were like, Oh, this is, you know, this is a great solution. But we did end up pursuing that more generalised direction of trying to kind of make sure there's infrastructure underneath all these solutions to ensure that they are sensitive and effective. But later in the project, we did actually come back to the kind of entertainment industry. I think we've talked about sort of cinemas and ideas around that just when we spoke about the workshop and we did notice that a lot of ideas were cropping up in this space and we did spend some time looking into that in some depth but I think at the end we just really thought we wanted to nail down the kind of support infrastructure for idea generation around Misophonia.
Adeel [26:33]: Are you talking about like a common infrastructure or common ideas to kind of support people who have Misophonia that can be applied to all environments?
Freya [26:48]: Yes, we actually took it from more of the perspective from businesses and entrepreneurs and academics. So creating a toolkit for them. I know we touched on it a bit earlier about, um, the actual, you know, researchers having misophonia as well. Um, but one of our key, key pivots, um, was when, also, I hope you don't mind me talking about, um, yeah, Freya. Um, but basically it became quite difficult sometimes doing, um, so many exercises and so many activities on misophonia because it, it becomes a really, uh, present thing in um in your life particularly if you suffer with it and for Freya it was becoming quite damaging for our kind of work um in that it was making it worse in personal life and so we thought well surely if um if so many researchers who are interested in the topic you know by chance also suffer with misophonia it's often how they find out about it then this can't just be a problem that um that we're having and so we we thought that because yes, research has been picking up at such a rapid rate, which is amazing. But surely this is the time to make sure that the research that is increasing is being done in an ethical way that protects the people that you're looking into, as well as the people who are investigating the topic itself. And so we were inspired by Phil Hesketh's consent kit and ethics kit. And so basically he decided as our main output for our, final master's degree that we would be creating a online and book version of a toolkit for businesses if they wanted to improve the way that they address issues for their consumers who have these novel conditions or academics who just want to take a different approach and incorporate different styles of researching within their own disciplines. So that's where our Novel Condition Toolkit came from, basically.
Adeel [28:55]: Yeah, I'd love to hear more about that, because that's very interesting. I thought about, I'm sure I think even folks like Chris have thought about training for human resources at companies to kind of help their employees learn about misophonia and potentially get resources. But I didn't even think about like a design toolkit that could be used for helping consumers, like thinking about it while you're designing a product or something. Yeah, that's very interesting. Do you want to talk a little bit about that toolkit and how that's organized and what it is?
Freya [29:31]: Yeah, I think it's interesting that you kind of picked up on the kind of more commercial side of it there. And I think it's very much a product of the way that we studied over the last four years that we are quite oriented towards thinking about bigger environments. So we do consider the kind of business and commercial environment, although this is something we don't consider to be a commercial project ourselves. I think it would be a great thing if a business was to be more successful because they were providing a more inclusive offering. And there is just that fundamental commercial element to it that you just can't ignore. So yeah, the toolkit was very much, we wanted it to appeal to a range of people. So it was written very... It's very open to interpretation. It's not a step-by-step process. It's more of a guide. You can dip in and out of sections, but it's very honest. been very open about oh yeah we did this it didn't really work all of that kind of nitty-gritty stuff that we would like other people to avoid doing that's all in there as well it's by no means like here is the perfect polished method it's just something that we hope will evolve and grow And, you know, everything has a first edition, a first version. And we know that it's not perfect. We know that for a fact. But we just really wanted to put out a starting point, something that, you know, because misophonia is a condition that's picked up so much in research recently. There's not to say that's not going to happen with other conditions as well. I mean, we've seen it in the past with, I mean, we've already mentioned autism, ADHD, things like that. Yeah, there's going to be other conditions like this out there as well. And those other conditions can benefit from this process too in this sensitive way of researching.
Adeel [31:42]: That's really interesting, yeah, because the autism community has done a lot in getting events at... I don't know if you have it in the UK, but we have sensory-friendly days for museums, theatres, grocery stores.
Freya [32:01]: Yeah, we do. We have them in Bristol a lot as well. Sorry, we both study in Bristol. But even for careers fairs, um we have you know the early times that you can go in where they're quieter and we had it for our own um event i believe uh really recently um yeah but yeah they're really important and they're really um well received in the uk as well so yeah
Adeel [32:28]: Yeah, I wonder, I wonder if toolkit like this might benefit from being open sourced on like GitHub or something where people can contribute and potentially add to or, or fork and then create their own versions.
Freya [32:41]: Yeah, that that's really always been our intention with it. And whilst we haven't necessarily worked out the mechanism to do that yet. The toolkit leans already on other people's work. And as Mabel mentioned earlier, Phil has gotten his ethics kit was a big contribution. But, you know, none of this is necessarily really original to us. It's just that we bought different fields together and made those connections. So yeah, it's 100% something that we would open source and would encourage people to use and tell us, oh, no, we didn't like this. We loved this. Like, we would just love for it to grow and become a really comprehensive and a collaborative thing, I guess.
Adeel [33:29]: Is it? I think it's kind of bad. I think maybe Chris sent me or is it public yet? Like, is it is it published like some link? If it is, we'll have a link in the show notes for sure.
Freya [33:41]: Yeah, that'd be good. We had it as a book because we wanted people to use it as kind of a manual and a workbook and a question book. It's split into questions and themes as opposed to... a linear story as Freya said and we weren't you know really in the view of selling it in a really commercial way and also as a website we just thought it would make it more accessible so we do have mock-ups available which we can definitely link to but yeah we'd love to publish it even better in an open source way that that's pretty much the aim of
Adeel [34:20]: of why we did it so it can be used by whoever yeah um whoever thinks it will benefit them yeah yeah we could talk about yeah we can talk about that later um i guess what are so do you want to summarize like what are some of the um i guess most promising um suggestions from the toolkit that that you'd love to see more companies like like the top maybe the top few things that you'd love to see companies consider when they're um yeah when they're designing for misophonia
Freya [34:49]: I think the main thing is, I think it would be presumptuous to say that many companies are even thinking about misophonia right now, but I guess the general learning of not just the toolkit, but our entire project is this idea of treating people who suffer with a condition as like a creative force for good not just someone they've got to make sure they tick the box for you know these those of us who suffer with this condition like we have this pent-up passion and interest like this is why things like this podcast exist right we all have this creative energy that we're willing to expel so i think the main learning really from the toolkit is you've got to go and talk to those people. You've got to get them involved. You can't just sit from your chair wherever and say, oh yeah, this is going to be the best thing. You've really got to go and talk to them and understand, not just make a decision based on an article you read online. I think that would be the biggest learning.
Adeel [36:02]: Yeah, and investing in people.
Freya [36:05]: No, just saying investing in people in more ways than money, really.
Adeel [36:10]: Yeah, the episode that I'm editing right now, actually, yeah, one of the points at the end was how Claire, who I was talking to, said, like, despite everything she's gone through, the misophonia is, she feels like she has the superpower of empathy. you know that that that misophonia is kind of given her and and uh and and you said even Freya like you were you were like reading the room which I think I said that on the podcast a lot I feel like a lot of us who are HSP which is highly sensitive person and have misophonia are feel like we're more quickly and more intensely able to kind of read a room or or notice people who are not or kind of talking past each other or something like that um yeah I definitely agree with that So I agree. I mean, even in a commercial, maybe even more importantly in a commercial environment, that's a very valuable skill that's hard to quantify, but, you know, can definitely make or break a product or something that a commercial company is working on. So I'm curious, Mabel, before Freya, did you, you said, I think you said you hadn't heard of discipline at all, like was... no no nothing i i didn't know what it was i didn't know anything about it i'd never even heard of the word before looking looking back do you do you notice do you remember anyone maybe your family or your or your life growing up that you're like oh yeah that was misophonia yeah definitely definitely um but even more so it's
Freya [37:47]: it's that when I'm out and about or when I'm here overhearing other people's conversations it's like really relevant and I'll just message Freya and I'll say you know I just heard this or I just heard that and um it's completely changed um how I um understand how people think and how they are actually processing the things around me it's actually I feel really improved my kind of empathy for other people's day-to-day lives by just doing this project.
Adeel [38:18]: Yeah. And if I go on first.
Freya [38:21]: I'm just going to say, I think Mabel and I have had quite a lot of interesting conversations because You know, we all sense and perceive the world in different ways. And obviously doing this project, me and Mabel spent a lot of time together. And, you know, we might be sat in a lecture and someone opens a packet of crisps and, you know, that's it. I'm like out for the count. Like, don't try and talk to me. Don't do anything. And to be fair. mabel might not even notice that someone's opened the packet of crisps but she would have definitely noticed something that like some sort of i don't know like a social cue or something that i've completely missed so i think it was just very interesting the collaboration between someone who does suffer with it and someone who doesn't just having that the two perspectives meant that we stayed very like We didn't go down any rabbit holes, really. We were very, like, focused. Yeah. I would say, I mean, hypersensitive or did you say highly sensitive? Yeah. Yeah, highly sensitive people. I watched your TED Talk on it, like, really at the beginning of the project. And I, you know, showed it to Freya and we talked about it. I also feel like I am a highly sensitive person. just not an auditory highly sensitive person um so yeah the types of things that I was talking about you know social cues or whatever um it was actually quite nice because we kind of filled each other's like what we lacked in each other but we still had the empathy um there and that kind of became you know, really valuable. And, and it just, yeah, it just came, became more pronounced, I guess, in our work. Yeah.
Adeel [40:14]: That's funny. I'm kind of now, I don't know if you know the movie, See No Evil, Hear No Evil with Gina Wilder and Richard Pryor. I'm thinking like an opposite version where two, two people are hypersensitive on each of those senses.
Freya [40:25]: Yeah, literally.
Adeel [40:27]: Oh, interesting. Freya, do you want to talk a little bit about, we don't have to go the whole hour like I usually do, but I'm just kind of curious about your background with Misophonia, kind of when it started and kind of how it led up to here.
Freya [40:41]: Yeah, for sure. I guess like many people, I can't really pinpoint when it began necessarily. I think it was probably sometime around the age of 10 or 11. I can't really say with any certainty, but I think I really started to notice and realise that it was something that was particularly affecting my life around four or five years ago when I was doing my A-levels. I just really, really struggled in exam situations. Just if someone, sorry, trigger warning, if someone was breathing really loudly or like tapping a pen, jiggling their knee. I was just completely out. I just could not focus. And my academics were so important to me and it just seemed so insane that something so small could... wreck this exam that i prepared for for months and so i went through the process of trying to kind of get an accommodation and i did manage to get a separate room um for exams but not through recognition of misophonia it was i got diagnosed with hyperacusis at the time which I don't believe I do have. I think it is definitely misophonia, but it was a means to an end. And yes, it's kind of always been sitting there at a low level and something. It's very personal. So it was a very big step to bring the word out into the real world and propose it as a project. And I was quite nervous to do it. And I just feel so lucky about how well received it's been that people have wanted to start conversations with me about, oh, is there anything I do that I could do better to prevent me from being triggered or things like that, even on our course, like our lecturers are just so much more aware of things like this. And I think. Yeah, it's just been incredibly, kind of, I feel incredibly privileged to have been able to explore it within this safe and supportive environment that not everybody has. Yeah, to be honest.
Adeel [43:06]: Yeah, and what about your family? What do they think? Because it sounds like they were probably triggers early on, obviously.
Freya [43:15]: Yeah. I think my mum suffers to a degree. Okay. Maybe not to the same extent, but there's definitely signs of it there. But I think it's been a really lovely thing that I think most people who have misophonia do struggle with their immediate family just because you're with them all the time. It's not that personal. It's just how it is. But it's been a really nice thing to... to go from this thing that you have that honestly sometimes it might just seem like I'm in a bad mood or whatever but for them to kind of understand through seeing me do this project how much it means to me and how there's a whole community out there as well and I think it's just been extremely valuable and I you know I feel so much more comfortable at home I wear my new air plugs at meal times and things like that. And I just feel, you know, it's not such a, not that it was a taboo, but, you know, it's just something I can talk about now and not feel judged at all.
Adeel [44:29]: And so maybe going back to the project, like if the project's over, any ideas on what do you guys, are you planning to work on anything else related to the project, extension of the project, any ideas that have come out from the project? Or if not, where would you like to see it kind of like go next, you know, after we open source it and all that?
Freya [44:53]: We're hoping to publish a white paper that we've been working on from our meta-analysis. So hopefully, fingers crossed, we can get that out again as like a free open source text about what we found. And so that kind of gives reason for our toolkit to exist. So yeah, hopefully that's this summer. We were just talking about it on a science session with Chris Edwards. And he asked us the same thing. And we're both keen, you know, to continue it. I guess because we've been in this university environment, it's kind of difficult to see how we could facilitate that outside of that. But that doesn't mean that we wouldn't want to do it. I think I personally, you know, just speaking for myself, I've loved it so much. I would love to take it on. I think it would just be a problem of, figuring out how and where I could place, you know, myself and my skills and the things I've developed in the future. But, you know, we've done it once. We can do it again, I'm sure.
Adeel [46:07]: Yeah, I mean, because there's, you know, there's consultants and there's training, there's like training things that people go into companies and they do training sessions or I'd be curious if, usually it's people who've been in the industry for a while. um you know but that you know that's a potential avenue um if to do private contract training or whatever
Freya [46:29]: Yeah, it's definitely something we have discussed as kind of, I guess, a more commercial route for the work we've done. But I think... It could still be open source, but you could just be... Yeah, of course.
Adeel [46:41]: Being the author would have a little bit more cachet than some random... Yeah.
Freya [46:48]: And I think we have got to this position where we do feel like... We are experts at the human-centered side of misophonia. And as far as our research has shown us, there isn't anyone else who's doing what we're doing. And that's quite a special place to be in, especially with a condition that's becoming so much more just growing and people are talking about it a lot more. So I think in that way, we see ourselves as really lucky to be at the forefront. But like Mabel said, it's just difficult to see how to progress it now that we've finished university. But I think we would both absolutely love to.
Adeel [47:35]: I guess now that you've finished university, do you have any immediate plans as to what you want to do next? Is it more school or do you have a big job lined up at Microsoft?
Freya [47:48]: Personally, nothing planned as of yet. Not to say that I'm not looking, but just nothing's quite aligned as of yet. I'm hoping to stay in Bristol. I think for the moment. But I'm going away to do some conservation work. So I'm kind of having a break from academia completely. So I'll be in Central America doing that. But then coming back... Yeah, looking maybe into third sector work, maybe into policy design.
Adeel [48:25]: What's third sector? I don't think we've heard. So, like, charities. Oh, yeah, yeah. Non-profit kind of stuff.
Freya [48:30]: Yeah, non-profits. But, yeah, kind of leaving it open on purpose, really.
Adeel [48:37]: Yeah, no, that's fair. But not necessarily Misophonia full-time, because it's not a huge job market for Misophonia. But it...
Freya [48:49]: We don't know what it will look like. So, I mean, it's not something that I would ever say no to. This has been, you know, I think, you know, one of the most rewarding things I've done at university. So if I was, you know, to be able to work in it, you know, as a job or a career, then I'm super, super open to that. So I guess we'll leave that space open.
Adeel [49:16]: yeah yeah um yeah well i guess we're coming up to about an hour here um anything else you want to share with other you know folks who have misophonia or you know young young students coming up who are looking for projects to do any any uh anything you would like to see taken to the next level explored more in in human-centered um um you know work with mr because you're right i think there's a lot of neuro-centered and psycho-centered work where it's kind of analyzing what's going on in here but the relationship what i'm personally more interested in like uh why do the podcast is all the the repercussions of misophonia on on life on the people around us and their effects on us um yeah just curious i'd love to
Freya [50:02]: I'd love to get involved with some arts projects surrounding misophonia, maybe see where the realm of theatre, of music, of fine arts, of architecture, those kind of disciplines might be able to take misophonia. I'd be really interested in seeing where that could go and potentially getting involved with people who are also interested in investigating something that maybe they themselves have nothing about and see and see what they can give to the um to the growing body of research i think would be my interest so yeah do you have like a music or theater theater background i'm just asking because there are some there are some of those there's some rumblings happening in some creative projects in that regard so um i'm curious i don't necessarily have a background in theater i have a background in creative arts so visual communication, but I love theatre, I love music, I love arts, I love the creative industries. And yes, I always have an interest in those and participate in lots of events to do with those things. So it's definitely aligned with kind of the things I love and my values.
Adeel [51:18]: One thing I want to get going for you again about next steps kind of things too, but I forgot one thing I wanted to ask you, Mabel, was just about... um misophonia thinking that you know being an anthropologist or anthropology as someone who studied anthropology have you i don't know like heard of misophonia in history but have you has it made you think about other societies in the past and and maybe how they've dealt with sound and hearing and possibly um misophonia related issues in in other societies whether they were somewhere extreme sensitive to sound or something, or maybe valued it more.
Freya [52:01]: Yeah, that's really interesting. I mean, I guess from kind of a small scale societies, if you kind of have a look at the bare necessities and I guess people who are more, um, who live alongside lands rather than in super urban populations, if you're going to send to your investigations on subgroups like that, then yeah, I'm sure it does become really relevant because there is this tendency to... be more connected with your environment and with um natural noises and obviously we know that um misophonia is triggered by kind of very close human human reaction and so if you look in um in places like japan we um myself and freya kind of just um discovered this text that was talking about um how there's such a dichotomy of silence and immense noise um i know that freya's um visited herself and she was talking about how you know there's complete respect of silence everywhere and then you go into these environments whether it's an arcade whether it's a karaoke bar that have these it's just overwhelming with noise and so for such a different society like Japanese society and you know there's plenty of anthropological texts on Japan having this dichotomous kind of nature of how the individuals exist so there's a very seminal text by Ruth Benedict written, you know, for the American government at the time about Japan. It would be interesting to see how that dichotomy could be understood literally through one exact lens, you know, for example, auditory conditions and things like that. So, yeah, no, it's... it's super possible that that is either really relevant as a biological feature or as a very urban contemporary kind of issue that has been developed over time. And I mean, I haven't come across anything that studies that specifically. So then I'm sure there's quite a big gap for that.
Adeel [54:27]: Right. I feel like that should maybe be studied. I think you said something about biological, but maybe we've become so disconnected so quickly from the lifestyle we had thousands of years ago that potentially our brains are misinterpreting sounds as dangerous. um when they shouldn't be when when hearing hearing something as a danger long time ago like whether it's a an animal coming after you or something rustling when as a warning to something could be getting misinterpreted now as you know somebody chewing or or somebody tapping their yeah
Freya [55:10]: I mean, a lot of studies do focus on that, of igniting a fear kind of biological reaction. So that's definitely been done. But I think probably underexplored is the social elements of that and looking at that from a whole system is probably lacking, as opposed to the neurodiverse. This is a fear reaction from certain triggering noises. Yeah, that gap can definitely be filled. Yeah.
Adeel [55:38]: So Freya, you were in Japan and could you talk more about this dichotomy? I'm very interested because I feel like there could be a theater or a musical based in Japan all about misophonia centered around this.
Freya [55:52]: I travelled to Japan in 2019, so just before I started uni, and it's very interesting because, as Mabel said, Japan's obviously a culture that, you know, they really respect their sort of zen, their really quiet areas. But then I just, you just go into one of the arcades and it's just the loudest place I've ever been in my life. I couldn't stay in there for more than about five seconds.
Adeel [56:23]: In terms of triggering, not just like, like a music concert or something can be loud, but it can be enjoyable.
Freya [56:29]: yeah it's just beyond anything i've ever heard before because not only is it volume loud but you've got all of these different machines at least in a concert there's this element of harmony and you know a single source of noise But in these arcades, it was just all, especially because they're all based around like different characters and stuff, so different pictures of voices, different settings of the games. And it was just completely overwhelming. But yeah, I think as Mabel touched on, this kind of cultural context around misophonia is a really, really interesting area. And although my background in management culture is still something that we talk about, all the time and maybe more in terms of sort of organisational culture and brand culture and things like that but you know we all have our own experiences and our kind of things that happen to us in life that lead to the way that we perceive things and how we view things and I think there could be some really interesting research to be done in terms of that and misophonia because I only know my experience of growing up in the UK with certain noises. And you think how different that must be for someone in Japan. Or I've just been to Vietnam, for example. And again, totally different soundscape. And it's just such an interesting... I think it's something... it's going to be so interesting to see how it develops whether the prevalence is the same across different cultures or if there is some element of our culture that perhaps um sort of exacerbates misophonia
Adeel [58:26]: Well, I guess, yeah, I mean, once again, I know we went on a little tangent at the end, which usually happens with most of my interesting conversations. But I did want to leave Freya a chance to talk about what would you like to kind of maybe see looked at next or study next as a kind of a follow on to your study?
Freya [58:45]: yeah so when we did our meta-analysis we were looking for i mean predominantly we're looking for the presence of kind of human-centered methodologies and socially based solutions but we did also look at a number of other factors so one of those was the country of origin of the paper um but we also looked at gender of authorship and i think those two areas. Although we didn't find anything particularly conclusive in our study I think those are going to be really interesting areas to explore further. I mean, it ties in with our whole conversation about culture, I guess. But I think, yeah, just more studies that look at the social perspective. So thinking about misophonia in specific contexts as well. You mentioned about misophonia in the workplace, and that sounds really fascinating and really interesting. I think it's just continuing to fill these different environments where it's not necessarily been considered before. And we're at a really lucky time where there's plenty of different environments to consider. So yeah, I think there's a lot of exciting things to come for sure.
Adeel [60:08]: Yeah, I think it's an untapped landscape for research. I think it's untapped. I've mentioned this to a bunch of musicians and writers. It's an untapped creative landscape, untapped emotional landscape to explore that most people who think of us as just irritable people don't realize. And so, yeah, it's great. And I'm sure a lot of people, you know, reading your toolkit and white people will learn about it. I think a lot of people who participated in your workshop probably learned a lot as well. So thanks for doing that work. And I hope this reaches a very wide audience.
Freya [60:46]: Thank you. I hope so too. Thanks for having us on. And yeah, I know if anybody's interested in talking to us more, we're always here to have a conversation about it.
Adeel [60:56]: Right. And yeah, I guess I'll get your info and put it in the show notes for anyone listening that can go to that.
Freya [61:01]: Yeah, definitely. Thank you.
Adeel [61:04]: Thank you, Fran Mabel. Exciting to see this kind of work that is not the usual approach to tackling misophonia, but I think it's very approachable to people in the design community and could have a huge impact. If you liked this episode, don't forget to leave a quick review or just hit the five stars wherever you listen to this podcast. You can hit me up by email at helloatmissifoniapodcast.com or go to the website, missifoniapodcast.com. It's usually easiest to send a message on Instagram or Facebook at Missifonia Podcast and on Twitter, we're Missifonia Show. Support the show by visiting Patreon at patreon.com slash missifoniapodcast. Theme music, as always, is by Moby. And until next week, wishing you peace and quiet.
Unknown Speaker [62:22]: Thank you.