Mental Health and the PhD journey w/ Shanika Ranasinghe

Speaker 1 00:00:05 Hello and welcome to today's episode of Accessibility and Me. I'm Anica Zeyen from Royal Holloway University of London, and I co-host this podcast with Oana Branzeii from Ivey Business School in Canada, and Luke Coughlin, also from Royal Holloway. Speaker 2 00:00:21 Our guest today is Shanika Ranasinge a PhD student. She also works at Voice Collective, a mental health charity in London, which supports children who have unusual sensory experiences. Speaker 3 00:00:32 Shanika, thanks very much for joining us today. For listeners who don't know, could you describe what s Schizoaffective disorder is and how does it affect your studies and work life? Speaker 4 00:00:41 Yeah, of course. So, uh, OA effective Disorder affects about one in 200 people in the uk, so that's not 0.5%. And the easiest way to describe it is that it's a delightful cocktail of schizophrenia and bipolar. So schizophrenia being kind of having, in terms of what's usually called psychosis, so, um, having what people call hallucinations, paranoia, delusions, things like that. And on the negative, so-called negative symptoms side of schizophrenia is depression. But if you have schizophrenia as opposed to OA effecti disorder, you can't have depression and psychosis at the same time supposedly. Whereas in s schizoaffective disorder, because there's also a mood disorder element to it. So, um, which comes from the bipolar kinda side of it. So, um, yeah, so yeah, so the bipolar side of it means that you can have depression and the psychotic symptoms at the same time in s schizoaffective disorder, which kind of is what is unique selling point is. Speaker 4 00:01:37 So, um, so yeah, you can have depression or you can have hypermania, uh, which is kind of low level form of, uh, full-blown mania, which is kind of elevated mood state, uh, where people become quite impulsive and tend to, um, spend lots of money, act a bit reckless, um, act out character. It has a huge impact on my study. Certainly. I, well, as you can see, I've got a kind of memory lapse of the memory loss, uh, that, and uh, there's a lack of concentration, um, that comes with the kind of cognitive dysfunction that comes with this kind of, um, mental illness. And, um, it, it meant that even though I started my PhD full-time, I had to go part-time just because, um, my episodes can be quite unpredictable. They can also be quite long. Uh, so the longest episode I've ever had was eight months. Speaker 4 00:02:23 Um, that was at the end of my undergraduate degree. So it thankfully been a bit shorter during my, uh, PhD studies, but I did have to retrospectively interrupt, um, the academic year 2017 to 2018, uh, because I, I think I read one book and did no writing that year just because I was unwell in various, um, for a long time in various, um, in various kinda, uh, I wanna say settings, but that's not the right word. But what I mean is that, uh, so I had episodes of psychosis and then I had episodes of depression and then I had episodes of Hypermania and they all kind of went one after another rather than kind of all convalescing at the same time. So, um, got nothing done that year, had to retrospectively interrupt. It means that I'm quite slur reading for the thesis, um, which is very challenging because I'm doing an arts and humanities, um, PhD. Speaker 4 00:03:12 So obviously a lot of it is involved in reading previous theories and building upon that to kind of forge my own part. So that has been quite challenging and that's certainly the weakest aspect of my, um, PhD pros, I guess you could say. Um, in terms of my job, it's been a bit of a different situation. So, um, in that voice collective actively tried to employ people who hear voices or have heard voices in the past. So actually the fact that I had this, um, diagnosis, even though they don't use, um, diagnostic kind of, um, medicalized language in this particular workplace, uh, the fact that I have this kind of very long term experience of hearing voices, which goes across over 25 years of my life since childhood. So that was actually something that helped me to get the job. So, um, so it's kind been swinging around about between the PhD and uh, between the work I do at Risk Collective. Yeah. Speaker 3 00:04:03 So Cassie, your mind back to March, 2020, um mm, where were you at the start of the pandemic and how did life change for you? Speaker 4 00:04:10 Um, yes, the pandemic was, had quite an interesting impact on my PhD. Um, I think March, 2020, um, I'd been quite inactive for the most part. I very foolishly, uh, actually on this day it's the 10th mark, but 2020 I, um, flew to Stockholm to uh, interview someone who was very important for my PhD studies. But other than that I hadn't, I'd been kind of dilling and dallying and not really, uh, committing to the PhD as much as I could have been. And that was mostly on health ground. Um, and then obviously the lockdown, uh, you know, the pandemic, uh, you know, and at that point I decided to go to Stockholm because I was like, oh, well it's in Italy, but it hasn't reached the UK yet. Probably had, but you know, that was just me being hopeful and naive. But yes, when I came back from that I was quite fired up and kind of ready to go. Speaker 4 00:04:56 And then obviously the lockdown was announced and um, actually the lockdown did amazing wonders for my PhD. Um, suddenly I was able to concentrate a lot better and I was really productive for the first year of the pandemic. Well, maybe the first year and a half actually. Yeah, so I was a lot more productive. Um, I got a lot of work done, even did a bit of reading, put out some questionnaires, did more field work. I had to change the field nature of my field work, um, slightly obviously because we were in lockdown, I couldn't just go and interview people. But actually, um, by fortuitous chance, my PhD has always had a online ethnographic aspect to it. Um, so since 2014 I've been doing online ethnography and actually, um, face-to-face interviews and the kind of offline ethnography, um, has been a smaller part of my PhD. Speaker 4 00:05:42 So the fact that everyone was kind of suddenly stuck at home, which have very little to do, meant that more people were willing to talk to me, either advising Zoom calls like this or, um, by doing my questionnaires, um, about, you know, their experiences and um, how that relates to my project. Um, so actually the pandemic was amazing, um, in terms of PhD, cause suddenly, um, all the kind of social expectation of being an uh, quote unquote normal person disappeared and suddenly it was okay to be at home and to be feeling very low, uh, feeling very confused, feeling the per feeling like you don't want to go outside. Um, so that actually, um, that actually enhanced my ability to do the PhD a lot going through the pandemic. And actually, so um, when we started coming out of the lockdown properly, uh, last summer, I really struggled with that and I'm still struggling with that because now there is societal expectation that we will go out, we will socialize, we will go to campus, uh, we will use the libraries, um, all this kind of things. So yeah. So I guess in that sense, my experience of the pandemic may have been quite different to a lot of other people's. Speaker 3 00:06:42 Were there any sort of negative aspect that the pandemic brought up, you know, in your work life or your study life? Speaker 4 00:06:48 I think in terms of job that I'm doing now, so I'm working from, I've been working from home the whole time, um, and that suits me really well. But um, it does mean because we're supporting young people there and I've worked in this job before, previously in 2017, so I can kind of compare how it was before. And uh, during the pandemic there is something about meeting a young person face to face and sitting in the room with them while you are supporting them. So I think, so that's not to say that Zoom is a bad thing and there are a lot of advantages to supporting young people via Zoom calls, but I think there is something about that personal contact. Um, in terms of the PhD, it meant that, um, so my supervisor's actually based in California now because she left my institute. So, um, uh, but agreed to keep on supervising me, which I'm very grateful for. Speaker 4 00:07:33 But it meant that she couldn't come over to the UK cause she tends to do that on her way to Huff phone search in India. So I think it was, yes. So we went about nearly one and a half years without seeing each other, um, in person. And obviously because she's in California, we had been on Zoom anyway. But, um, again, there's something nice about a face-to-face meeting, um, and just kinda sitting down with pieces of paper and being able to underline together and things like that. So in that sense, the pandemic was quite detrimental and disruptive. Speaker 3 00:08:01 What accessibility provisions have your university and employer made and is there like sort of elements of their accessibility provisions that could be improved? Speaker 4 00:08:11 I can't directly think of anything the university has done. I mean, um, as a British disabled student, I'm eligible and do receive, um, disabled students allowance. Um, so there was a concern when the pandemic started about what was going to happen to my face-to-face, one-to-one mentoring for my mental health condition. Um, but, um, luckily they were able to move to teams fairly quickly. So I guess there was that, but other than that, I don't think, I can't think of anything. The uni specifically did, obviously all their meetings and things went online, which was, um, handy because I was a student rep at the time, um, and was having to attend a lot of meetings on campus. Um, so then moving all online meant that I didn't have to check all the way to Eggum, which was nice check off the hill. But, um, um, in terms of my workplace, um, you know, I kind of just said, I just assumed they were all still working from home and that wasn't necessarily the case, but I said to them, I would, my preference would be to work from home for this role. Speaker 4 00:09:08 Um, and usually because we're kind of health-based service and a front facing frontline service and it's important for people to have that face-to-face connection, um, they wouldn't usually necessarily let you work from home completely. Um, they would kind of aim for in the office or hybrid, but I have been able to do everything from home. Um, so I got a work laptop, uh, which was set up for me with everything I needed. And, uh, yes, I've been able to do that and I have a really great boss and they kind of check in with me cause they're aware that working from home can be quite isolating, um, not seeing your colleagues around you having a little chit chat in the office or going for lunch together. So, um, yeah, I think those were the main kind of accessibility things in terms of things that could be improved, um, I think, I mean this is something that applies to all students, but particularly to, um, myself as a, as a disabled student, um, there has been very patchy communication from my university, um, regarding what's going on on campus. Speaker 4 00:10:07 So emails get sent out weekly to the undergraduate students, but as a postgraduate student, I'm not kept in the loop about what facilities are open, whether I have to wear a mask or not, uh, what's happening with the P G R study space that p um, that is dedicated for us to use. So I went to campus the other day actually for the first time in quite a few months. And, uh, I just wasn't sure whether I was meant to wear a mask. I wasn't sure whether the campus was running. I, you know, so there was, there's a lot of, um, work that can be done on communicating things. And, um, actually I was meant to attend a focus group yesterday, um, about, um, study space provision for, and this is for all PS not disabled ps, but, um, I couldn't attend, so I did write to them and say, I think you really need, seriously need to have a focus group for disabled p students because our need are quite different and quite specific. Speaker 4 00:10:56 So for me to come to campus and not know whether certain rooms are open or whether there's a one-way system or everything, it's very anxiety interesting. And, um, and anxiety can trigger paranoia. Paranoia can lead to psychosis. Psychosis can lead to suicide attempts, you know, so it's, it can all snowball very fast. Um, so just even having that kind of basic information, basic communications, um, I think is really important and has been lacking. Um, you know, and it's been very patchy. And what I mean by patchy is that at the start of the pandemic, there was suddenly, you know, we were getting all these newsletters and then it's kind of disappeared without any warning. So I think that has, uh, been confusing and just not knowing which areas of campus are open to me is a particular problem for me because, um, one of my huge triggers for my psychosis is academic libraries. Speaker 4 00:11:45 So saying, oh, the library is open, but not specifying whether the PGR room is open and whether it's just P G R or whether it's still, you know, know a free fall with everyone, you know, and I did, I did say to the dean of the doctoral school, I, um, I did write a letter to him via the doctoral school and say, you know, this is actually not helpful for me because I can't use the library due to disability. And as ridiculous as that may sound, that is what is the case. And so actually knowing what study spaces on campus are available to me as a disabled student is really important. Um, and you know, they, and they'll just say to me probably, oh, this is an assistive technology room, but that's not why I, I don't need assistive technology software. I just need a space where I can safely work. And in any case, no one has ever bothered to show me where the assistive technology room is. Um, I've looked at the library map, I find the new library that we have incredibly disorienting, so I can't figure it out from the map or by asking people, you know, and people directly without physically leading with it. So it's just quite impractical in that sense. The lack of communication is, um, quite anxiety inducing and not helpful. Speaker 3 00:12:51 Just to like, uh, folks a little bit on more on your, um, your work. Um, yeah. Could you talk a little bit about your work for Voice Collective? Speaker 4 00:12:59 Yeah, sure. So, um, so like you said, voice Collective is a, um, is, uh, charity. It's part of mine in Camden, uh, which is the Camden branch of the Mental Health Charity Mind Voice Collective is one of various hearing voices projects. It's a youth project for people who have unusual sensory experiences. And our kind of unique selling point is that voice collective employees, staff who have heard or currently hear voices. And, um, we are free to talk about our experiences with young people in the se. Uh, and that's quite different to NHS services or private therapy or whatever in the sense that even if a therapist or a psychiatrist does hear voices themselves, they're not allowed to disclose that to, um, a service user. So we support, um, young people in a vi variety of ways. Um, we do kind of one-to-one work with them or their parents or people supporting them, uh, like psychiatrists, uh, therapists, youth workers. Speaker 4 00:13:53 Uh, we offer trainings to professionals to help them understand, um, the phenomenal voice hearing more and especially how it affects young people. We've run loads of care support groups, uh, for different ages and demographics and um, also for parents as well. Um, we used to run a siblings group, unfortunately due the pandemic that's had to kind of, uh, slide a far radar, but for the moment. And we also, uh, do creative workshops. So it's a very vibrant dynamic project. Lots going on all the time, but our main focus is, um, supporting young people to hear, who hear voices or have other sensory unusual sensory experiences. Um, unusual and scare quotes, um, uh, because we see this as a kind of normal phenomenon and we try to normalize that as much as possible. But, uh, yeah, our focus is kind of on supporting young people to understand experiences in a way their experiences in a way that makes sense to them. So we don't impose a medical model understanding of mental health problems. We don't talk about mental health as a disability unless that particular young person identifies with a disabled label and, um, has strong feelings about that. So we talk to young people about their experiences on their own terms and using their own words. Speaker 3 00:15:05 Fantastic. It sounds like really important work. Just as a final question, so you touched upon this like a little bit I think before, but if you could have like one accessibility wish for the future of workplaces, like maybe one thing that all workplaces could change, what would that be? Speaker 4 00:15:21 I, I think this whole working from home kind of hybrid, uh, model thing is great. And I think I, I would love that to continue in the future and become a, the kind of new norm where we don't have time, not just to disabled people, you know, for people called pregnant people going through the menopause. You know, anyone experiencing any, anyone who's caring for, um, someone, you know, people who can't necessarily make it into the office every day who do want to work. Um, you know, I do think that kind of disability barriers make it hard for people to enter the workplace constantly, um, and with the idea that they can stay there for a long time. So I think, um, it would be really great if we could keep this kind of working from home or hybrid working from home, going into the office model. Speaker 4 00:16:04 Um, I think it's, um, I think as a result of the pandemic, quite a few countries are trialing four day a week, uh, working weeks. And I think that could also be a really good move for a lot of different demographics as well. So, um, I'd really like to see that become the norm in the uk. And yeah, just kind of better information giving, um, from like universities and things like that and kind of greater interest and more funding, of course that's always gonna be a big issue. Um, you know, more funding for universities to, um, support their very overstretched counseling and disability services. I think that's really key. Speaker 3 00:16:38 Wonderful. Uh, Shika, thanks very much for joining us today. Speaker 4 00:16:42 No problem. Thank you. Speaker 1 00:16:47 Thank you very much for listening to today's episode of Accessibility in Me. We hope you enjoyed it and we'll tune in to our next episode. We would like to thank the British Academy for funding today's episode.