transcript

Audiovisual Cultures episode 94 – Community Covid with Dr Rabya Mughal transcript


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Paula Blair: This is Audiovisual Cultures, the podcast that explores different areas of the arts and media. Join me your host Paula Blair and the researchers, practitioners and enthusiasts I meet along the way.

See our website at audiovisualcultures.wordpress.com and other links in the show notes for more information.

For now, enjoy the show.

Paula Blair: Thank you for tuning in to another episode of audiovisual cultures. Today we’re looking at the relationship between art and well-being with my very special guest

Paula Blair: Dr Rabya Mughal, who is a postdoctoral research fellow and science arts and culture at University College London’s school of life and medical sciences. You are most welcome Rabya. It’s a real pleasure to have you join us on the podcast today. How are you doing?

Rabya Mughal: hi Paula Thank you very much for inviting me and for that introduction. That was lovely, thank you very much, and thank you for having me on your podcast.

Paula Blair: yeah you’re very welcome it’s been a real treat getting to know you just a little bit this past few months, and to learn about your research so I’m really looking forward to getting into all of that today.

Paula Blair: We’re going to be talking about the role of creativity and what that can play in our health

Paula Blair: But, but there are some issues, of course, because it takes a certain level of privilege to have the means to be creative and do creative things, and so, as I understand you from working on a lot of these sorts of areas and issues

Paula Blair: Specifically on the UCL Community Covid Project. Would you be happy to just outline that project a bit for us?

Rabya Mughal: Yes, so UCL Community covid project is being conducted at the UCL culture and health research group at the division of biosciences and what we do is we look at how

Rabya Mughal: Non medical interventions can help with certain health conditions and we focus on arts and creativity. So what we do know is that

Rabya Mughal: things like art, creativity, things even like sewing and embroidery, being in nature, listening to music, socializing with people, reading philosophy – what we call

Rabya Mughal: salutogenic approaches and non medical holistic approaches – we know that these can be beneficial for our health.

Rabya Mughal: What we do is look at how we can try to evidence that benefit and the Community covid part of this research is looking at how creativity, arts and other forms of Community engagement have been used during the pandemic, and in particular what we look at is how this

Rabya Mughal: Community engagement can be used to address social and health inequity.

Paula Blair: Fantastic

Paula Blair: while many people might have access to something, they might be able to find something around the place, you could have a pen or you could draw on the back of an envelope or

Paula Blair: write something down or most of us have phones of some description, you can make notes on or take a photograph with or something.

Paula Blair: But it’s not always as simple is it as just plucking creativity out of the air, it’s knowing what to do, what you’re able to do, there’s a whole raft of things going on there.

Paula Blair: And, and there may also be different social, cultural, maybe educational and economic barriers, as you say,

Paula Blair: That prevent somebody from just giving something a try, I mean even psychologically people might think oh I’m not good enough or

Paula Blair: That’s stupid, only kids do that sort of thing, all sorts of reasons, and that’s all before we add this weight of covid on top of everything and the added pressures that that’s introduced.

Paula Blair: would you be happy to explain and just tease out some of those details, those issues, for us just so we have a very full picture of what’s going on there?

Rabya Mughal: So I think it’s a really interesting question but it’s also really big question as well isn’t it, because what we know what the evidence says is that when we do these

Rabya Mughal: arts and creativity activities we can involve ourselves in things like aesthetic engagement, we might be using our

Rabya Mughal: imagination, we might be utilizing our emotions, there’s cognitive stimulation that goes on and there’s sensory stimulation, there’s social interaction.

Rabya Mughal: We might be using physical activity and, in turn, those things have a positive psychological response, for example, it might help us with coping and emotional strategies, it might have a positive physiological response, such as

Rabya Mughal: it might lower our stress levels or lower stress hormone responses, it might help us with social outcomes, for example, it might reduce loneliness or isolation.

Rabya Mughal: And it might help us with behavioural outcomes such as adopting healthier behaviours and skills and developing skills.

Rabya Mughal: So what we know that the evidence says that these holistic approaches, these creative and artistic approaches, are beneficial to our physical health and there’s a lot of evidence for that. The evidence is there to say that this works.

Rabya Mughal: But then we come across like you say these barriers for people, and I think that’s really interesting to break down those barriers, so what we see is a lot of cultural, socioeconomic and

Rabya Mughal: and physical barriers to arts participation and breaking that down even further is

Rabya Mughal: When we frame these things, when we make these research questions, are we making the research question? Are we putting our own

Rabya Mughal: frame of mind into the research question? and I say that because a lot of the research I’ve read indicates that we are doing this.

Rabya Mughal: One of the pieces of research I’m thinking about is it came out quite recently, and it was about.

Rabya Mughal: it was about arts and music participation in various different social groups and one of music participation things that they were talking about was participation in ballet.

Rabya Mughal: that was just one of the things, there were lots of other things, but they were looking at participation in ballet. and then, at the same time you’re looking at different groups different socioeconomic groups, how they’re participating in ballet.

Rabya Mughal: So then, when you look at this activity and then you measure its participation in different groups.

Rabya Mughal: It wasn’t a surprise that there weren’t a lot of South Asian communities participating in ballet but then that’s, not to say that South Asian communities

Rabya Mughal: And people from those groups don’t participate in any musical activity, that they don’t engage in music, they don’t use music as a, as different things, as prayer or meditation or using different types of music or using different

Rabya Mughal: ways of expressing music so that’s just to do with music right.

Rabya Mughal: What I’m trying to say is that, when when you frame the question in a certain way you’re going to get certain types of answers, so I think

Rabya Mughal: that’s also got something to do with it, so when we say that there’s low participation in cultural activities from certain socioeconomic groups we’re also saying that there’s low participation in our interpretation of what

Rabya Mughal: Cultural participation really means. So yeah I think that might be more of a reflection on the research question itself, but then also

Rabya Mughal: When we go to

Rabya Mughal: implement Community activities and music and arts within the bureaucratic structures that we have, so, for example, when we take the NHS and we have

Rabya Mughal: This idea that we should implement holistic strategies to help with long term health conditions, when we then take that same research culture into

Rabya Mughal: Implementing this kind of stuff within the institutions that we have, are we then saying Okay, well, we think that all diabetic people should go and watch the ballet.

Rabya Mughal: These are the mismatches that we might have. So I think that’s one part of it is how we interpret cultural activity, so when we say that, then yes, there are lots of barriers but

Rabya Mughal: There are generally lots of barriers as well, there is truth to the fact that there are barriers to arts participation, for example when

Rabya Mughal: We talk to as part of the projects we’ve talked to a lot of social workers, we’ve talked a lot of link workers, I’m not too sure if you know.

Rabya Mughal: If you’ve heard of link workers, so people that work in social prescribing within the NHS and that work within this kind of holistic system

Rabya Mughal: that’s in the NHS. When we speak to them the sentiment is generally that when they’re working with people with vulnerabilities, when they’re working with people who have social economic vulnerabilities, for example, for example, people who are using food banks, people who.

Rabya Mughal: are single mums, people on low incomes. When you’re working with them and bringing to them holistic approaches to their health, for example, saying well why don’t you go on a nature walk? why don’t you do a collage workshop, for example? Their answers generally are

Rabya Mughal: we’ve got more pressing issues, we’ve got housing forms to fill in, we’ve got we’ve got this problem, I’ve got this problem with my Council tax, I’ve got this problem

Rabya Mughal: With universal credit or I’ve got this problem with childcare and so these things are much, much more pressing or appear to be much, much more pressing than taking part in

Rabya Mughal: A nature walk and so there’s that kind of mismatch as well, so we might call it a barrier to participation, but it might also be that that participation just doesn’t seem like it’s very important to a lot of people, so I guess

Rabya Mughal: You have to look at it from a top down and bottom up perspective. So what do we say is participation and what do we say, are the barriers to participation.

Rabya Mughal: And what are participants, what are people within the service saying are their barriers to participation, are their priorities for participation?

Rabya Mughal: yeah it’s a big question. It’s a very good question, what are the barriers to participation and I guess it’s quite a philosophical question as well because you’re

Rabya Mughal: you’re bringing to the lots of your own thinking.

Paula Blair: I wonder if it’s part of the general landscape of thinking that the arts in general are just frivolous, they’re just superficial, they’re not important, and that’s why they’re the first to get defunded and that sort of stuff, you know it’s probably part of a much bigger problem.

Rabya Mughal: yeah and I think sometimes the system

Rabya Mughal: And I don’t know whether this is whether this is just endemic to this country or whether it’s you know we we have a civil service, you know the UK is famous for its civil service.

Rabya Mughal: And whether that kind of thinking is endemic to the civil service and bureaucracy, I’m not too sure, but yeah there is this

Rabya Mughal: way of working, where if it’s preventative then it doesn’t take as much.

Rabya Mughal: It doesn’t get as much funding and it doesn’t get as much.

Rabya Mughal: Attention as when there’s a crisis so when when you get to a point where you do need

Rabya Mughal: Immediate medical intervention, that’s when our medical services do very, very well, but it’s the point of prevention, it’s the point of adopting healthy behaviours, it’s the point of

Rabya Mughal: looking after your health up until the point where it doesn’t become a crisis, and these things are the bulk of the

Rabya Mughal: You know the fun the money that goes into the NHS are to do with these long term conditions.

Rabya Mughal: I guess, when you’re looking at preventative it’s different from when you’re actually in the crisis and so when something falls into that preventative category, because it’s not

Rabya Mughal: Immediate, because it’s not of your immediate concern it’s not there at all, and maybe these are these are behaviours that we need to adopt or behaviours that we need to promote.

Rabya Mughal: But we do know that arts intervention work, so what can we do about those two bits of information?

Paula Blair: really fascinating stuff.

Paula Blair: yeah I mean just to go off tack a little bit here, there is a really amazing charity here in Newcastle upon Tyne

Paula Blair: Which annoyingly their name is escaping me, but they have been on the podcast before. I think it’s rooms for you that’s what it is and they specialize in

Paula Blair: doing arts projects with people with terminal illness so they’re in their end of life

Paula Blair: And they may have a few months, a few weeks, maybe six months something like that, and they do lots of arts projects with them.

Paula Blair: And it just makes them happy and it keeps people occupied and they feel more positive and they are able to think better about

Paula Blair: how to spend their last time and it’s, I suppose, it’s part of that idea of when you can’t prevent anything, what can you do to have

Paula Blair: People have actually a good end of their life as well, so there’s so many I think angles to where this could be important and it’s not at all frivolous it’s actually really essential for well being at all stages of life so there’s an awful lot there to think about.

Paula Blair: And I think there’s probably really strong links with mental health because again

Paula Blair: It gets to a crisis point before anything really happens, a lot of time, sometimes people never get the help they need, and it can end in very, very awful circumstances.

Paula Blair: it’s that sort of thing I think there were a lot of epidemiologists and virologists out there a year ago, saying look if we overreact

Paula Blair: And we prevent stuff that’s better than having to deal with a crisis and, of course, most of the world has had to deal with an absolute crisis and is dealing with an absolute crisis at the moment, so.

Paula Blair: Yes, there’s a lot to be said, I think, for putting more into preventative measures in these So hopefully

Paula Blair: Just by talking about this and educating people about it, that will help.

Paula Blair: if we if we look, then, specifically, at maybe how you’re trying to address that with the Community covid project and the ways that you’ve been gathering data and learning more, understanding more about the vulnerabilities people have and

Paula Blair: The range of stories people bring with them and how we understand different equalities.

Paula Blair: If you’re happy to maybe we could talk, then a bit about the workshops that you’ve been doing as part of that

Paula Blair: and the idea of actually resourcing the creative activities and what can happen when you provide people with the means to do

Paula Blair: you know something creative and if there’s a little bit of direction going on there too in a facilitated workshop. so, if you’re happy to talk us through that that’d be great.

Rabya Mughal: so some of the workshops that we’ve been doing with participants have been

Rabya Mughal: Around people’s experiences of lockdown, their experiences of the pandemic. Their experiences may be accessing services or

Rabya Mughal: experiencing loneliness or isolation or the anxiety that’s come with the pandemic and expressing that through art forms. So we’ve run a couple of very, very interesting workshops.

Rabya Mughal: The first one was run by somebody called Mah Rana who works with us, who is actually a PhD student who’s working on

Rabya Mughal: interventions with people with dementia and so she, she does lots of really interesting things such as

Rabya Mughal: embroidery, so the mindfulness that comes with embroidery and also the fine motor skills and you know everything that kind of comes with doing this very, very intricate and thoughtful

Rabya Mughal: thing for a long period of time. Her workshop was on collage and we looked at how we might be able to express our feelings through the medium of collage.

Rabya Mughal: And you know that might involve looking at lots of old magazines and you know bits of paper and things that you might have lying around, and you know, looking at maybe words in newspapers and picking them out and

Rabya Mughal: thinking about why why you’re picking them out, and so you know when you see somebody’s collage on a piece of paper they might have used a certain colour, they might have used a certain picture, they might have used certain words

Rabya Mughal: To bring the picture together, so it might look like a complete mess of the picture, it might not look completely aesthetically great, it might look wonderful.

Rabya Mughal: that’s beside the point. what the point of the collage is is to look at it and think: how does this reflect my experience?

Rabya Mughal: And in looking at reflecting my experience how do I then talk about my experience, how do I frame my experience? and, if I can have a sort of narrative around the experience, then maybe I might be able to

Rabya Mughal: address the issues that come up during the experience, for example, my collage in particular.

Rabya Mughal: I happen, and I thought this was a very, very interesting, I was thinking, why I was doing this myself, my collage looked at Meghan and Harry interview.

Rabya Mughal: And I picked up pictures of Meghan and Harry and, for some reason I also picked up words that weren’t to do with the interview but were around understanding and telling my side of the story and

Rabya Mughal: Family and these kinds of things and and I’m picking these things out and thinking Why am I picking these things out? maybe I’m thinking about my own family, maybe I’m thinking about my own

Rabya Mughal: way that I project myself or the way that I am talking about how I’ve experienced things, and when you look at these and then

Rabya Mughal: You look at everybody’s collages and you ask everybody to talk about their collages you can see some very, very, very interesting stories, you know you hear about people’s experiences and rather than

Rabya Mughal: sitting down and doing a traditional interview with somebody which we might do in research, and you know it might be very, very structured, when you get somebody to

Rabya Mughal: express their opinion, through the medium of art, through the medium of collage,

Rabya Mughal: You might get a lot more rich data from that, you might get a lot more interesting data from that or you might get more of a glimpse of the person, rather than a set of structured answers that they might

Rabya Mughal: want to tell you just to just to tell you, so we run these workshops just for that purpose to understand how people have been experiencing Covid.

Rabya Mughal: And that’s one of the things that we’ve been doing as part of the Community Covid project. we’ve also done a lot of focus groups of people so we’ve spoken to

Rabya Mughal: Link workers and social prescribers and people that are working in the Community,

Rabya Mughal: people that are working in arts engagement in the Community, people that are working in local authorities and social workers and teachers

Rabya Mughal: To ask them about what what do you think are the barriers to participation? what can we do to make these these things much more accessible for people and what do you think are the issues around

Rabya Mughal: what’s happening in arts participation stuff? yeah and as well as that we’re doing lots of like traditional quantitative work which we have to do as well!

Paula Blair: it must be nice then to be able to participate in the workshops, as well as having to do the more traditional scientific data crunching and

Paula Blair: that sort of thing.

Rabya Mughal: yeah.

Rabya Mughal: And I really liked the idea that we

Rabya Mughal: can do both.

Rabya Mughal: I think it’s very, very important to have that scientific data crunching and that quantitative data that can say look X, Y z happens, and this is the p value, and this is

Rabya Mughal: this percentage of people say this, and therefore we can confidently say this exists because the statistics say so.

Rabya Mughal: But then when you look at the real world experiences, you can at least paint a rich picture and those two quantitative and qualitative pieces of data when they come together, I think, together, they can

Rabya Mughal: create something very, very coherent and I think that’s what the research should look more like.

Paula Blair: yeah I think that’s so important, I mean I think when maybe the general public, those of us who maybe don’t know how the scientific process works necessarily, we just imagine boffins in white coats in a laboratory.

Paula Blair: So it was.

Paula Blair: Really fun because I participated in one of the workshops and it was really fantastic to have you in there with us and you were just the same as all of us, because we’re all being facilitated by Mah and

Paula Blair: there were only a few of us are, but we were having a nice chat as well you know, so it was great in a way it was like a talking therapy for some people.

Paula Blair: As well as the process of I mean, I was very quiet, I get very hyper-focused when I’m doing stuff like that, so I can, I find it difficult to have a chat and make things so I’m sort of making things and being really

Paula Blair: ah doing the stuff but I’m listening, but it was great yes to have you there with us and it sort of breaks down that barrier as well, between the researchers and the participants that you’re studying, we’re not just lab rats.

Rabya Mughal: yeah and I think, I think it’s best to do research and that way. I’ve got to just say also there was another workshop that we did with an

Rabya Mughal: artist called Alejandra and that was a really, really good workshop as well and she actually used

Rabya Mughal: things that were just lying around in the room, and you look at the things that are that there are there, and maybe write something down on a piece of paper and then create texture out of the paper and then you take pictures of it.

Rabya Mughal: With your phone or whatever, or if you don’t have a phone, then you know just look at it, and that was a really interesting workshop as well, where

Rabya Mughal: We you know, wrote down, the first thing that came to

Rabya Mughal: mind and then took pictures of it and then looked at it from a certain angle, and she’s a photographer and so she

Rabya Mughal: talks about perspective and everything, but then all the different types of perspective that there are so not just literally the perspective, but also how you’re framing your perspective, how you’re framing

Rabya Mughal: Your experience and you know some of the photos that people sent in were really, really interesting, some of the things that they had written down on paper we’re really, really interesting and how they’d

Rabya Mughal: Use the paper to express their feelings like schrunching it up or or tearing it apart or folding it, gave you an insight into how their experience had, how the pandemic had impacted on them and what their experience of it was.

Paula Blair: I think, being able to have a space where people felt very safe to just talk about that and to sometimes to use what they were actively doing in the moment.

Paula Blair: So it was a very live, quite a visceral experience as well to just hear people and people have very, very sad stories, like awful awful things have happened to so many people.

Paula Blair: I think the numbers became so big so fast in terms of deaths and cases and that sort of thing, there are so many

Paula Blair: Human stories where people have had tough times and they’re survival stories and they’re barely survival stories in some cases, whether it’s directly to do with Covid or not.

Paula Blair: It was really important to remember as well, like again yourself

Paula Blair: You know you’re a researcher looking at this, but you’re also a human being surviving a pandemic and that’s a really hard thing to do, and you know billions of us are doing this together and

Paula Blair: Maybe more together than some, but it has affected everyone, you know so it’s been really important actually to see a face of the research and see you as humans and it’s been amazing actually that so many researchers

Paula Blair: of all kinds are being so open, and I mean exposing themselves and being quite vulnerable in doing that, but there’s so many doctors out there who’ve set up their YouTube channels and they’re telling us what’s going on all the time and

Paula Blair: You know, on Twitter, you see these very generous thoughtful threads from people who go I’m an actual virologist here we go and explaining a bunch of stuff.

Paula Blair: I just have really appreciated your presence and the actual presence of the research and the researcher being in there, but again at the importance of remembering all of you who are doing that work, you’re people, you know and that’s so important.

Paula Blair: Just a wee reminder to check out the show notes wherever you’re listening for relevant links including audiovisualcultures.wordpress.com for more information and to sign up to our free monthly newsletter.

Paula Blair: If you felt comfortable to do so because you bring your lived experience, as well as your

Paula Blair: Research experience to the project, and if you’re happy to go into that in a bit more detail or whatever you’re happy to talk about there.

Rabya Mughal: yeah and I completely agree with you, I think it is really important to be a person whilst you’re researching. It is really, really important to

Rabya Mughal: understand where somebody is coming from when you’re researching that person, that is what we’re doing, we’re looking at people’s lives, we’re looking at people’s lived experiences and we’re going very, very deep into their psyche and talking about some very

Rabya Mughal: very personal things that have happened to them.

Rabya Mughal: And in order to understand that and empathize with that. I’m not saying that researchers that don’t have lived experience aren’t able to do that, of course, we’re all able to have empathy.

Rabya Mughal: But when you do have that lived experience you bring a different level of empathy to the situation and I think it is very, very important to not have this

Rabya Mughal: power balance between the researcher and the participant. in my mind when when we do these research projects, when we look at what’s what’s happening on the ground and when when we’re looking at

Rabya Mughal: public services that are working with people who are facing the most – the most – inequality in society, then we have to come at it from a position of

Rabya Mughal: partnership. We can’t be saying this is what we’re going to do, and this is how we’re going to implement it, and this is how we’re going to run the service for you. We shouldn’t have that power dynamic, we shouldn’t have that

Rabya Mughal: hierarchy, both within research and within the services themselves and, unfortunately, that is what we see, we see this, we see this hierarchy, we see an us versus them kind of culture.

Rabya Mughal: We see a dynamic, where I am the professional and I’m helping you, and it really ought not to be like that.

Rabya Mughal: When we create services, when we design services, when we innovate these kinds of things, we must do it with people at the Centre. there must be like a participatory approach to this and yeah I bring my own life experience to this.

Rabya Mughal: I am you can either call it first generation or second generation, so my parents came over to the UK. I was born here in London,

Rabya Mughal: in a low socioeconomic background. we had free school meals, we were in the service quite a lot and I have that experience of the service and so that’s what I bring to this to this research and that’s what I brought a lot of my career and for me, it was a very, very

Rabya Mughal: I guess an unusual upbringing, because

Rabya Mughal: I got scholarships to private schools and and all sorts of things happened that made me a little bit different from everybody else, and so I come at it with this lived experience and that also comes with a lot of

Rabya Mughal: with a lot of baggage itself

Rabya Mughal: Because there are these power dynamics and you do see that the a lot of people might go into these kinds of careers and they might go into into research and they might

Rabya Mughal: want to work in these kinds of areas because ‘I want help somebody’ and it really shouldn’t be about helping people.

Rabya Mughal: that’s a bit patronizing. it should be about creating systems where people are able… first of all, where the system is sustainable,

Rabya Mughal: where it thrives, where the system is created for the person and with the person and where the system addresses all of the capabilities, as well as the needs of the person.

Rabya Mughal: And then second of all, it should be a system which is also sort of owned by the person as well, not a system that things are done to the person.

Rabya Mughal: yeah I think these sort of power dynamics, these things that we see within within all of our institutions, these kind of things

Rabya Mughal: are important to how we address these concerns within the with within institutions. I think that, in order to create a fairer society, what we need to do is start pulling at these systems, pulling at these institutions that we conform to and that govern us.

Rabya Mughal: Like I said before, when we do things like around systemic change we’ve got to look at them from a top down, as well as a bottom up approach. I’m not sure if that answers your question, there’s a lot.

Rabya Mughal: I could go on for quite a long time, but that’s the experience that I bring to this work.

Paula Blair: That’s really helpful and that leads on to what I was going to ask next really was about well, what are the hopeful like comes of the likes of the Community covid project? so as you’re saying it’s you know, identifying that need for creating

Paula Blair: I suppose just to very much reduce what you said there, creating these sustainable enabling shared systems that are beneficial really across the board and, as you say it’s not that

Paula Blair: patronizing, oh we’ll do this to help you, but it’s actually empowering people to take on their own issues and do more for themselves and to stop preventing them from doing that.

Paula Blair: so from the project it’s gathering information, but then what’s that going to be used for? is that going to be used to lobby with evidence for these changes?

Paula Blair: is the hope that it will help change mindsets even in ordinary people, so, as you say that the top down so maybe from a government level but also then from the bottom up to think well if there are people in

Paula Blair: Socioeconomically

Paula Blair: deprived backgrounds, who just think art is a load of nonsense and it’s a waste of our time and only

Paula Blair: You know, select derogatory terms here, and it’s only for those people that they think that they should look down on,

Paula Blair: Is it to change their minds and perspectives and go no actually you’re very welcome to do all of this, we’re reducing the barriers, we’re putting those away now, we want you to join in, if you want to

Paula Blair: join in, you know that sort of stuff so I’m rambling a bit, but are those the sorts of things that the aim is to

Rabya Mughal: yeah I mean definitely having a participatory approach definitely having

Rabya Mughal: The person who’s using the service at the centre of the service and sort of driving the change within the service, that’s something that we

Rabya Mughal: always talk about and that’s something that we always promote. we believe that

Rabya Mughal: We should have the user at the centre of the service, you know, have this participatory approach. To involve the user within our research is also you know a very, very important thing.

Rabya Mughal: What we’re looking at, I guess you’re talking about the deliverables of the project. We are looking at a lot of

Rabya Mughal: I guess you can call them top down outputs. so we’re writing a rapid evidence review where we’re looking at a critical appraisal of all of the Community activities that have gone on in the last year or so. We’re writing an evaluation framework. We’re writing a

Rabya Mughal: good practice assessment that makes recommendations for people who are running Community projects. We’re looking at writing an evidence synthesis report, and then doing lots and lots of peer-reviewed

Rabya Mughal: publications and conference presentations. And then, at the same time, like, I was talking about the creative journeys that we’re looking at from the participants

Rabya Mughal: from the workshops that we’ve done so we’re looking at how people have experienced covid, how they’ve experienced the pandemic and how

Rabya Mughal: they’re expressing their experience of the pandemic. so we’re looking at all of these things and I guess you can call them all of these things

Rabya Mughal: are a top down thing that we’re looking at, but the bottom up thing that we’re doing is promoting participatory action within our research, promoting the voice of the user within our research and having lots and lots of

Rabya Mughal: elements of that voice within all of the top down, things that we’re doing so within the reports that we’re writing, we want to have the voice of the user within the reports.

Rabya Mughal: Within the conferences that we’re doing, we want to have pictures and you know the the creative journeys, we want to have all of those within the presentations that we’re doing and that’s because we want to

Rabya Mughal: emphasize that this is research that is done

Rabya Mughal: on behalf of a group of people, and it is important to have that group of people if they could be part of the research, if they could be part of

Rabya Mughal: you know, they can be the researchers, that is perfect, but if that’s not possible, then their voice needs to be heard within all of the elements of the research.

Paula Blair: It feels like covid has brought about the opportunity or the very rapid need and necessity to really properly assess all of this, because these are problems that were existing anyway.

Paula Blair: It’s one of those things where I think across the board, it didn’t bring the problems with it, it highlighted them, it showed them up, it made them undeniable.

Paula Blair: so, is that part of it as well it’s it’s not just about responding to covid. this is forever, we need this change, because this is going to happen again at some point or there’s going to be some other kind of public health crisis.

Rabya Mughal: yeah I think

Rabya Mughal: What Covid has done is really highlighted the inequalities that we have in society

Rabya Mughal: As it is, and it’s really, really kind of exacerbated them as well, so.

Rabya Mughal: Well, first of all, when we say vulnerabilities, when we say that we’re working with vulnerable people, what we’re what we’re actually saying is that we’re working with people who are in socio economic vulnerability, we are

Rabya Mughal: Working with people who have physiological vulnerabilities so long-term health conditions and also with people with psychological vulnerabilities so people with you know long-term

Rabya Mughal: Mental health conditions. and when we look at how the pandemic has affected people within these groups, what we see is that these vulnerable

Rabya Mughal: populations entered the pandemic from very, very uneven starting points. If you’re living in poverty, for example, if you’re

Rabya Mughal: On a low wage, if you’re a member of a single-parent household, you’re most likely to have the highest level of covid-

Rabya Mughal: related impact. You’re more likely to be exposed to the virus, you’re more likely to be living in very condensed areas and

Rabya Mughal: You know these kind of disparities put vulnerable people at more of a risk of negative outcomes and those negative outcomes are only there because there’s already existing structural

Rabya Mughal: and institutional disadvantage. And the same is for people with chronic physiological conditions, chronic psychological conditions that

Rabya Mughal: require multiple points of entry into various social care and health services and so what we know is that if you started off the pandemic

Rabya Mughal: From an uneven starting point then those uneven starting points are just going to get more and more and more disparate.

Rabya Mughal: That’s the landscape that we’ve started off with and you’re right that the pandemic has highlighted vulnerabilities and

Rabya Mughal: What we’re also wary of is that.

Rabya Mughal: Do these vulnerabilities, are they going to carry on post-pandemic? Are the services that we’re promoting during the pandemic going to be running

Rabya Mughal: The same way as they are in two or three years’ time? Have we created different ways of working during the pandemic

Rabya Mughal: that we will now be expected to work over the next you know, several years? And those are things you know we can’t answer those things at the moment, what we do knows that there’s been

Rabya Mughal: A severe sort of upheaval to lots and lots of community

Rabya Mughal: activities and Community organizations over the last year or so.

Rabya Mughal: What we don’t know is how those Community organizations are going to adapt and survive in the future in order to address all of the vulnerabilities that they have been doing for years and years.

Rabya Mughal: And so you know for the people that are working within those within those activities within those

Rabya Mughal: organizations, there is a big worry that we’re working on shoestring budgets, we’re completely stretched.

Rabya Mughal: we’re doing things online when there’s a lot of digital poverty, when there’s a lot of deprivation and people don’t have access to online things, and so how is this going to carry on? Are we now going to be expected to work on these shoestring budgets from now on?

Rabya Mughal: There are lots and lots of questions about how

Rabya Mughal: You know, social, health and community care services are going to work from now on and it is a bit of a worry for people that are working on the ground yeah.

Paula Blair: yeah a lot to think about there. Do you know if there’s anything

Paula Blair: That, what could be possible solutions or what will assist people in

Paula Blair: What we need to do to start affecting change? Do we need to start writing to our MPs?

Paula Blair: I guess, I mean if you could point people to where we can start learning more about your research that would probably be a good start as well, but

Paula Blair: You know, is there anything that general listeners of this podcast, what can they do to maybe push this on a little bit more, is there anything we can do and what might that be, what do you need to get this started?

Rabya Mughal: yeah so you can find out more about our research at culturehealthresearch.wordpress.com. That just outlines quite a lot of the projects that we’ve been working on.

Rabya Mughal: at the culture health research group at ucl we focus on lots of different types of Community participation activities and how they influence

Rabya Mughal: Our well being and our health.

Rabya Mughal: that’s a very interesting question, what can we do to help?

Rabya Mughal: It’s a very, very interesting question.

Rabya Mughal: I think.

Rabya Mughal: The first thing that we can do is

Rabya Mughal: promote Community activities, promote these kinds of organizations and

Rabya Mughal: help these kinds of organizations that are working on the ground and working with people. We should be promoting

Rabya Mughal: Better funding to these kinds of organizations, I mean these kinds of things are out of our hands but you’re saying to

Rabya Mughal: writing letters to MPs, I mean you could do these kinds of things, you could

Rabya Mughal: be actively involved in in these kinds of debates, but I think the best that we can possibly do is create a system which promotes

Rabya Mughal: Community engagement, that promotes healthy participation and public services that involve the user at the Center of the service, and I think

Rabya Mughal: When we can create a system where these these things can exist, then we can kind of start to address these inequalities in society. When we can

Rabya Mughal: Look at how power dynamics within the system can be addressed, when it’s a less of an us versus them kind of a system, when it’s less of a

Rabya Mughal: ‘You need to do this, and this, and this, and this in order to get your universal credit’ this kind of system, when it’s less of ‘you need to jump through these hoops

Rabya Mughal: Before we can sign you on’, when there’s less of this kind of a power dynamic, that’s when you might get better participation within systems within these public

Rabya Mughal: Institutions, so I guess what I’m saying is that we need a systemic change and we need

Rabya Mughal: We need a much more compassionate

Rabya Mughal: way of running things in the public services.

Rabya Mughal: I don’t know if we can do that from writing to our MPs.

Rabya Mughal: the bigger picture I guess would be that.

Paula Blair: yeah, I think, and I mean it’s a small advocacy thing to do, but it doesn’t hurt to educate your MP. Some some of them, some of them, are are willing to be educated on things. I’ve found that in my constituency at least. It’s worth a try.

Rabya Mughal: it’s worth a try and it’s worth promoting these kinds of things yeah.

Paula Blair: For sure. It’s putting me in mind, I think of

Paula Blair: Things I’ve heard on a raft of other podcasts that I listen to, where sometimes we just need to be leaders in our own communities and it might be those of us who maybe have that little bit more privilege than somebody else.

Paula Blair: Just starting something, I think that, like as we’ve seen with the mutual aid groups that just spring up

Paula Blair: more than a year ago

Paula Blair: where communities just got together and did stuff for each other, did shopping for each other, just small things like that, it’s maybe huge to somebody else and

Paula Blair: it’s just things that can include your neighbours or whatever, and hopefully if it’s even if it’s feeling quite tiny, if there’s a ripple effect of that tiny droplet that you put in the water, you know, hopefully it would get a bit bigger and, as you say, it is about

Paula Blair: empowerment rather than charity, you know, and that’s a major frustration I have is that in the UK, certainly, we’re so reliant on charities. You know me in myself

Paula Blair: the only way I’ve had proper treatment for mental health issues as through charities, that’s a really major thing that

Paula Blair: We as a society need to go: that’s not okay, it shouldn’t be up to people donating their hard-earned money to pay for somebody else to get therapy, you know, it should be provided for, because we’re not well because of the system.

Rabya Mughal: It’s a basic, it’s a fundamental right to be able to access any kind of

Rabya Mughal: Health support. You wouldn’t expect if you have

Rabya Mughal: high cholesterol, or if you have diabetes, you wouldn’t expect to be ignored by the health service because you have this long term health condition, and it should be no different if you have

Rabya Mughal: Any other condition. If you’re experiencing any kind of health condition, that should be addressed by the health service, and I do feel that we’re kind of in the foothills of this both of this research, but then also of this

Rabya Mughal: way of working with people.

Rabya Mughal: We see big sort of shortfalls in the social care system where if you’re a carer for somebody you

Rabya Mughal: are having to rely on charity, you are you’re having to rely on

Rabya Mughal: Things that you shouldn’t be having to rely on. the The state should be you know, supporting you within these situations, and in other countries, there is this this kind of state support, or there is this emerging

Rabya Mughal: Addressing of

Rabya Mughal: The increase in social care needs and we do have that here as well, it’s happening

Rabya Mughal: But it needs to increase in the next you know however many years because

Rabya Mughal: We now have more people who are recognizing mental health conditions, we have more people that are in need of carers, we have more people that are in need of preventive medicine.

Rabya Mughal: And these things all can be addressed through holistic interventions through these salutogenic approaches and

Rabya Mughal: if we can use these things to address these issues, then that would be brilliant, but it does need state support and it does need you know the public service support and, hopefully, you know, hopefully that’s something that can happen in future.

Paula Blair: it’s all stuff to work towards. I think on a happier note, you mentioned to me before that there might be an online exhibition of some of the work from the workshops, would you be able to tell us something about that.

Rabya Mughal: yeah So if you go to our if you go to our website, you should be able to see the exhibition, it should be up in the next few weeks or so. yeah so it’s at culturehealthresearch.wordpress.com.

Paula Blair: Wonderful. Rabya is there anything else that we haven’t covered today that you would like to say? this is a good, it can be about anything.

Paula Blair: You just want to add anything that we haven’t got to I mean I think we’ve covered everything we planned to do, but if there’s anything at all I’ve forgotten about or do you just you’re burning to say or what’s your favourite movie you know anything at all.

Paula Blair: you’ve got the floor.

Rabya Mughal: Oh I don’t know if you’re going to regret doing that!

Rabya Mughal: I think it is important

Rabya Mughal: To reiterate that these kinds of different, innovative and alternative ways of looking at how these you know these different ways of working can really work.

Rabya Mughal: And you know we like to promote those things and we like to we like to look at different ways of working, we like to do we like to look at innovation and.

Rabya Mughal: how public services might be able to work in a completely different way if we just turn the service on its head; how might it work if we… I worked in an

Rabya Mughal: Innovation project years and years ago where we tried to look at how to innovate the job centre.

Rabya Mughal: A simple thing that we did was allow the people who were signing on to sit in the chairs of the person working at the job centre and changing that power dynamic, you could see that it did something for people’s confidence. I think that’s a very interesting

Rabya Mughal: way of looking at public services, it’s a very it kind of it’s a very telling way of how we do public services and I think there is a lot to be said about this power dynamic

Rabya Mughal: That’s in research and in public services, in all of these kinds of things that we’re looking at, and you know we can kind of

Rabya Mughal: change that a little bit if we can change the hierarchy around a little bit, make it a little bit less us versus them then maybe we might be able to move forward.

Paula Blair: that’s wonderful, that’s a really important message. Dr Rabya Mughal Thank you so much for all your time and for conducting this really important research. It’s been just an absolute pleasure getting to know you and about your work, thank you.

Rabya Mughal: Thank you very much, it was really interesting to talk to you, Thank you.

Paula Blair: This is a cosy pea pod production with me Paula Blair.
The music is ‘commonground’ by airtone used under a 3.0 non-commercial Creative Commons licence and is available at ccmixter.org.
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