Disabilities have been shown to impact your career path, especially when you want to partake in STEM. However, how do they cause specific problems when you have a chronic illness? Joining Craig Poku (he/they), in today’s conversation is the wonderful Dr Jazmin Scarlett (she/her) who talks about her career and the barriers she faced when engaging in volcanology.
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TRANSCRIPT
00:00:01 Craig Hi, I’m Dr Craig, and you’re listening to the Pride in STEM podcast, a series that explores the different barriers faced by members of the LGBTQIA+ community. As scientists, we are always taught that numbers and objectivity are the solutions to problems faced by society. However, the storytelling is just as important, especially when it comes to ensuring equality for marginalised communities. Through this series, I hope that you, the listener, will come away with a new insight into what these barriers are, and discover pragmatic ways to help us overcome them. In today’s episode, I’ll be talking with Dr Jazmin Scarlett about what it’s like to work in STEM with a chronic illness. With the recent global pandemic, our working lives changed very quickly to ensure much of society could continue to function. With that change came higher levels of online working, something that many of those with chronic illnesses praised. Unfortunately, STEM is still behind the curve with regards to accessibility. Here we spoke about Jazmine’s career journey, the barriers that she faced along the way, and what she’s learned from her experiences. Jaz could you tell us a little bit about yourself.
00:01:04 Jazmin Yeah, so I’m Jaz, I am thirty, almost thirty-one, I’m a black woman, I have a disability and I am queer. I am a vulcanologist, so I research volcanoes. In particular, I research how people live with volcanoes, so the more social side of things. I like playing video games, I like playing Dungeons and Dragons, I’m getting into that now. And, yeah, I like to go on walks when I can be bothered to leave the house. And yeah, currently, I’m a Senior Research Associate at the University of East Anglia.
00:01:47 Craig Nice, to so before we begin, I just wanted to congratulate you on getting that senior research associate position, because getting a postdoc is really hard. And trying to make a career in academia is also really hard. And these are the things that, whilst of course we are getting better in terms of being kicked about and stuff, there is a… so much luck associated with it. And especially when you do [inaudible 00:02:07] within different marginalised identities, it makes it harder. But then of course you’ve also got the factor that if you’ve then got a chronic disability, it means that from an ableist perspective, you may not be able to engage in certain activities, which in turn will then allow you to build you career capital, and I say that in air quotes. And then it will make you a more successful postdoc candidate. So before I even go on, because I’ve just thrown out a bunch of things all at once, and I realise that the audience may not know what we’re on about. Jaz, could you tell me a little bit about what a chronic disability is, and how it may impact people on a day-to-day basis?
00:02:49 Jazmin So a chronic disability, or a chronic illness is, as the word kind of means, it’s a disability or illness that persists throughout your life. So I’ve been diagnosed with Systemic Onset Juvenile Idiopathic Arthritis since I was two years old. And, bearing in mind I did day earlier on that I am almost turning thirty-one, so I have almost had this condition for twenty-nine years. And, yeah, and on a day-to-day basis it does vary between condition to condition, and also person-to-person. So, for example, I do know other people have a similar condition to me, but their experiences are so different to mine. Just because our bodies aren’t always exactly the same, and particularly the diseases are not exactly the same when it comes to an individual perspective. But on a daily, day-to-day basis from me, it’s I have chronic fatigue, and chronic pain. When I was younger, so, when I was growing up, as a child and in teenage years, I also had flare ups. So essentially inflammation in my joints. The most common joints I had inflammation in where my knees and my wrists and my ankles. But with systemic arthritis you can actually, all of your joints are impacted. And it also effects your immune system, and it also, apparently, I still don’t understand how it works, but I’ve apparently got arthritis in my organs.
00:04:29 Craig How does one have arthritis in their organs? Like, I understand it being in the joints, but….
00:04:34 Jazmin Honestly, I don’t know, and I think the doctors don’t also know, but they have, they just, when they see the blood tests, when they see the markers in my organ, I think that’s what it is 00:04:44.
00:04:45 Craig I mean, given the fact that I failed human biology, I don’t think I’m really in a position to make a comment about how you can have arthritis in your organs. But that sounds like a lot, like, yeah.
00:04:59 Jazmin I mean, growing up it was a lot worse, and now it’s better. But, yeah, when I was growing up I was not a happy kid, because it was… most days it was unbearable, just being in pain and not being able to get out of bed. And… trying to navigate childhood and teenage years, when you’ve got this disability, it is challenging. But I got through it, I guess.
00:05:28 Craig And the thing is, like, you should still be really proud of the journey that you’ve done to get to where you are at the moment now, because you’ve passed quite a few hurdles, and you’ve gone into a research field that probably involves quite a bit of field work. And with what you’ve told us about your particular version of arthritis, what do you feel are the key barriers for people who do have chronic disabilities, and how that could potentially prevent them engaging in STEM?
00:05:57 Jazmin Yes… so, being in vulcanology, or geography/geology, it does involve going out in the field. It obviously involves you being on your feet quite a lot. And that can be a struggle for me, so, in terms of how that’s manifested in, I suppose, barriers, or even not having the same opportunities as everyone is that for example… some field trips, some field courses, you are required to walk at least five kilometres per day, like 2.5 to the site, and 2.5 on the way back.
00:06:33 Craig That’s a lot of walking.
00:06:36 Jazmin It’s a lot, and I remember that was for my Masters course looking at Mt. Etna, so I was in Sicily. I mean, great opportunity to be in Sicily and see this volcano doing what it’s doing in person, and then going to the sites to actually see volcanic processes and stuff. But, yeah, like, it tired me out every day, and how that happened is quite a lot of the time you have to do activities in the evenings. And that’s when things got worse, but I’ll get onto that in a second. So when I do walking, I always stock up on extra water, because, just, you know, keeping hydrated is important in general. I also take painkillers with me. But I’m definitely the person known to, like, “Do you have a spare paracetamol?” It’s like, “Yeah! I got plenty.” And yeah, because I anticipate that after a certain amount of walking, I will start to have pain in my hips and my knees and my ankles, mostly, because of course I’m using them the most in terms of walking. So I would take those, and it would just be lots of rest breaks as well. So I’m usually always, not usually, I am always at the back of, like, I suppose the queue with other students. And, like, I’m fine with that, because I just know I get to enjoy the scenery a bit more, and not actually have to use my brain, because once obviously you get to each site, you get all the scientific stuff thrown at you. So at least me, at least I can appreciate the scenery a bit more. I suppose I miss out just in terms of just being in the group and actually experiencing, like, the, being in the environment and landscape. Although I did have friends and they would walk with me, so that was fine. There would also be a member of staff who would, like, just be, like, nearby or walk with me as well, because they would be aware of my disability. And what I would do is, so for undergrad and masters, I registered with the disability services, so I was at least on their system. I would always use that as kind of like a fail safe, like just in case something really bad happens. But I also made it known to the academic staff who were teaching me, especially when I am getting involved in field trips and stuff, that they are aware of my condition…. And also what I did which was quite helpful, is actually every morning I would go and find a designated staff member, and just say to them how I’m feeling that day. Because for my arthritis, it depends on the day, like when I wake up, like how I feel. Like, if I feel absolutely crap, if my joints are in absolute agony, I know I’m going to have a really bad day. So I would let them know how I feel. That did happen one time. It was for my undergrad where, it was like a really long day, and even though I took painkillers and whatnot, I was pretty much, like, knackered. And like, I pretty much went to bed, but then, like, usually sleeping it off, it means my pain levels go back to background kind of levels, which is on the pain scale of one to ten, my pain every day is either one or two. But in this case, the pain was, like, five and above. And that’s unusual for me. So I let the staff know and they actually managed to arrange it that actually I don’t actually go on the walk for that day, I actually did stuff, like, in the centre there was, I think there was a member of staff that was able to actually stay behind with me, and just to make sure I’m okay and whatnot. But particularly in geography field courses, you have to do activities in the evening based on what you’re seeing in the field and stuff like that. And that’s usually when things got tough, because for me I just want to have food and I just want to go to bed. So it was a struggle sometimes, like I would do it because I wanted to learn the stuff, but I would just obviously let a staff member know. Friends would be there to help as well, but then after that I would go to bed, and this is where most of the time I would miss out on the social activities that everybody else would be doing in the evenings. Because I was like, you know what I’m not sticking around for shenanigans. But a good thing is every morning, I was the one who was, like, fresh as a daisy, like ready to go. Like… everyone with hangovers, and I’m just like, “Hey guys, what’s going on!”
00:10:54 Craig Yeah, it’s like, I’m here to bike 00:10:55, and that’s the main thing. Right, and this is sort of, I guess, a follow on, did you find that you had to change the direction of where you wanted your career to go? Because obviously you mentioned that you’re more on the social sciences side. Now in my mind I’m aware that social sciences has elements of field work, but I don’t think it’s to the same extent as if, for example, pure, like, I don’t know… I’m going to get slated for saying this, a rock geology course of some sort.
00:11:24 Jazmin [Inaudible 00:11:24] it’s fine.
00:11:27 Craig Geosciences, that’s what it is, that’s the word.
00:11:31 Jazmin Yeah, I think I actually referred to, it did impact the direction I wanted to take it, because… I mean, talking to people, and I do quite a lot of archive stuff as well, I get to sit down. And that’s great, it works for me, I get to sit down. That’s not to say in some vulcanology disciplines, like if you’re doing chemistry for example, geo-chemistry analysis, you’re just in a lab, and you can sit down. But like, you know, it works to my strengths that I’m okay with talking to people, and I’m okay with being in the archives, but then the added bonus is I get to sit down, and take my time is probably, like, the main thing. Whereas quite a lot of different areas of, like, time dependent. So yeah, I suppose, yes, in that case influenced the direction I’ve taken, but at the same time, it’s what I’ve wanted to do, so I manage my own condition well enough that I can, kind of like, segue into what is more comfortable for me. Most of the way it has played out is, for example at conferences, like that’s a lot of networking stuff goes on there, and, again, similarly, once it comes to evening events, most of the time I’d just end up going to bed.
00:12:48 Craig So what’s, what I’m hearing from this is well is even though one could argue that because of your chronic disability, you’ve gone down a very particular career path. Though there are still elements of academia, or STEM, that you still are struggling with. And I think this is actually something that’s really important. I also think as well that it’s really good that you had bosses and supervisors that were able to take your chronic illness into account. So how has lack of representation effected your journey in STEM?
00:13:21 Jazmin So in terms of lack of representation from a chronic disability perspective, I suppose for me, it was looking at scientists, vulcanologists once I eventually set my path on wanting to be a vulcanologist. It was that, “Oh, there’s no one that I know of, or didn’t seem visible enough in terms of disabilities. It’s like, so that kind of made me feel, “Oh, maybe I can’t do it.” Then again, I am quite a stubborn person. I was like, “I want to do it, so I’ll go and do it regardless.”
00:13:57 Craig And I think that’s really important as well, because a lot of the time, we’re always told, “Go down the path of least resistance”, and I’m also a very stubborn person as well. And I’m like, “No, if I’m going to do something, I will do it, there is nothing stopping me from doing this thing.”
00:14:13 Jazmin Exactly, yeah, so it’s kind of like a mixture of that, so like, yeah on the one hand, it did make feel like, maybe I don’t belong in this space, or why isn’t there, like, more disabled, or visibly, or invisibly disabled vulcanologists. And luckily now I do know people that are disabled and are vulcanologists, but just from the outset, I suppose in a way it was disappointing.
00:14:38 Craig I also notice an increase in visibility for people who have got visible and invisible chronic illnesses, who are within the geoscience sphere, and even within vulcanology. I could be wrong, but you are one a few black women in that space. And I feel that sometimes what will happen is is that people won’t see for your chronic disability, or chronic illness. But they will notice that you are a black woman, that’s the first thing that they notice. And I guess for me, I’m also quite interested to know how your intersecting marginalised identities play into that lack of representation.
00:15:21 Jazmin Absolutely, yeah, and this is definitely a question that I get asked quite often is that in terms of, what has been the biggest barrier for you? Has is been because you are black, it’s like, well, technically it is because I am disabled that’s actually been the biggest barrier for me. Because it’s invisible, so we won’t know about until I tell you, and it is far more obvious than I’m black and presenting as a woman. It’s interesting because there’s a very long history of black people and black women in general, and, like, their physical or mental illnesses are stigmatised in some way that you’re even more of a broken person than, say, if you’re an abled individual. There’s added kind of like stigma put on you. And more of a, “I don’t believe you”, kind of like situation. So it’s like, “You don’t look disabled”, well, it’s like, “How the hell do you know? What does a disabled person look like? Do they have to be in a wheelchair?”
00:16:17 Craig Out of curiosity, have you have some of those sort of like experiences within academia?
00:16:23 Jazmin Not in academia. When I was younger, and growing up, I’ve had those experiences. One of the biggest, worst experiences where I grew up Milton Keynes, you actually could have a disabled bus pass. And you can get a cheaper ticket, basically. And I used that at one point, I was fourteen years old, like I was a wee kid. Basically I got on the bus, showed my disabled pass, they were like, “Get off the bus, you’re lying.” And I was like, “Are you serious?” And like, I like rang the number, the complaints number, and like, “Your driver is an arse”, I didn’t say that exactly. I basically like saying that’s not a valid reason to kick me off a bus, because you don’t believe that I have a disability. It’s within my right not to say what condition I have, like, it’s within my power if I choose to disclose what my condition is. People just need to believe you, that you have a disability, even if it’s not visible. And that can be hard.
00:17:24 Craig Definitely, and I think that very scary way, what probably makes that even more terrifying, is the fact that it wasn’t just the fact that you had a disability anyway, and were a white, cis man. But it’s also the fact that, you put the layer of black woman on top of that, then there are so many stigmas towards black women within society that we then add chronic illness on top of that, that they just went, yeah, they’re not going to believe you. You’re very fortunate in that you have been lucky enough to not have to dealt with some of these things within academia. But there are probably, for every one case where it went good for you, there’s probably ninety-nine cases of people who aren’t dealing with the same thing. And I think this is why representation is important, but more specifically, representation of different intersecting identities are important. You don’t want to have, say, a five year old Jaz see all of these people, and then go, well, I’ve just been told I have a chronic illness, and I can’t do something, and therefore this is the reason why. And I think this is why having your face, as a face of chronic illnesses, which is probably a big ask for anybody, is that of course terrifying, but it’s then kind of discussing why that representation is important.
00:18:50 Jazmin Yeah, being perceived is a… weird thing, isn’t it, just in general. But, no, like, it is important to have that representation. And if we are going to extend this to role models, then, yeah, like, just to show, like, other people, like, you can be disabled and you can be in STEM. You can do it. But of course a lot of the academic system is designed for the abled person. And, like, just to segue a little bit, in terms of the pandemic, and when everyone has moved online, there’s been a lot of disabled people, me included, that have been, like, “Oh, thank goodness, this just takes a load of weight of our shoulders, we can still participate, but in the comfort of our own home, because maybe we’re having a bad day.” And for me for example, at one point when there was, like, an online option, I took it because, I know I’m going to be tired if I travel all this way. And then travel all the way back. And that’s not because I’m lazy, that’s because my chronic fatigue would be like, “You’re going to suffer.”
00:20:01 Craig Yeah, definite, and I think that’s quite an important point to actually make, because you’re dealing with the fact that it’s taken the pandemic to realise that these options do exist. Have you found that these colleagues perceptions have changed based, like, from what they view of you? And then the question is then going, how do you think that perception could be translated to other people who may be within a similar marginalised group?
00:20:26 Jazmin I suppose, okay, when, for example, George Floyd was murdered, basically I told someone, I can’t remember, my line manager or someone, “Hey, I’m not feeling great, just to let you know.” And then people did just reach out to me and is like, “Take a mental health day.” Like, that sort of thing, they gave me that option. I suppose for me, it’s because I’m quite vocal in telling people how I feel sometimes, when it’s really impacting me. And I know it will impact my work. I let people know, and then people kind of like respond. Like, “Okay, so how can we help you get through this sort of thing.” Particularly in the work environment, kind of like situation. I suppose as well it’s kind of like understanding whoever is saying for example I would like to not come in for a meeting. I asked for the option, “Is it possible to do this job remote working?” They said, “Yes, that’s absolutely fine.”
00:21:17 Craig It’s interesting you say that I think because for me it’s this idea that when people talk about unconscious bias, it’s because it’s not something they’d had to actively think about. But then during the pandemic when we had to go to online working, and then during Black Lives Matter where people now all of a sudden acknowledged that racism is a thing. And then during these really big political shifts, it then became something that was on the conscious minds, no matter how you reacted to it. And I think because it’s now been in the conscious mind, people are now less willing to ask questions that are associated with, “Well, why do you need to work remotely? Why do you need to do this?” And I think that that is one positive that’s come out of this, because the reality is even though there are a lot of organisations who are trying to get people to go back into the office, who are trying to get people to do that, if the option to work from home and for you to be able to work in a more productive way is there, then that option should be presented more. And I think that a lot of organisations are taking that on board because they realise that flexible working is what people want.
00:22:29 Jazmin Exactly, yeah, presenting it as an option, I think is a thing. Don’t force people to go back into work, because they may not want it. There has been, like, research been done that actually people are more productive when they are actually working from home. It’s like, “Well, that makes sense, and to keep that open as an option, right?”
00:22:48 Craig Definitely, yeah, I’m aware of some organisations who have gone, “Right, we’re going to scrap the online, we’re going to go back to before.” But the problem is, we’ve now all got the awareness that it can be done. So, I think going forward there is going to have to be sort of like a kind of like hybrid option. Jaz, just to say that I’m really enjoying this chat, as you can probably tell, because, like, it feels more like a conversation than an interview. Like, we’ve kind of spoken about, like, role models and representation. You’ve kind of I guess hinted at it in terms of, like, you know, institutions doing better to cater to people who aren’t as able. Which is probably not the best way to say that. In fact, is there a better way to of being able to say that I guess.
00:23:30 Jazmin No, not really. From my vocabulary there isn’t. Like, you’re either able bodied or you’re disabled. Like, that’s the two options I see. I mean, there is probably better ways to see out there, but for me, I don’t have that vocabulary.
00:23:45 Craig And I’m mostly saying this because I don’t know what the answer is. And I suspect that members of out audience that will be listening to this podcast will be going, “Actually, is there a better way for us to be able to utilise language that then doesn’t come up as problematic?” But then the question for me is then going, we spoken about several solutions, if you could present to me one solution to improve… representation of people who have chronic illnesses, which of course is a very loaded question. What would that be, and why?
00:24:18 Jazmin I suppose this might come across as quite snarky, but don’t make excuses. Like, when an option is presented to you. For example, you could do a hybrid option, don’t come up with excuses like, “Oh, but it will take effort, it will cost extra money.” I mean, we know that universities have the money to do these things.
00:24:42 Craig I can tell you universities definitely have the money to do these things, yes.
00:24:44 Jazmin So I suppose the best thing is don’t make excuses, and we’re seeing a lot of discussions recently, it’s like, “Oh, right, pandemic is over now, even though it’s not.” It’s like we now need to get back in the classroom. I suppose, like, if an option is presented to you, and sometimes it is presented by the people that need it. If you want to make the place more inclusive and more accessible for people who do have disabilities, actually listen and then work with the rigid system that is in place in academia to make it work. Or if it’s too rigid, change the system.
00:25:22 Craig There are going to be some people who are listening to this who are going, “Well, I don’t have power to be able to make those changes.” But the beauty of networking is that you probably potentially will know somebody who is able to make those changes. And sometimes, it may not be the fact that you are able to change the entire system all in one go, but you maybe be able to go, “Okay, well, I have a zoom account that potentially means that people can, like, you know listen into this, and may not be able to fully engage. But at least that’s an option.” I may be able to provide an actual, physical recording, where we can put it online. Even things when it comes to people doing science communication on Twitter, I’ve noticed that Twitter now alt texting all of their gifs 00:26:05. It’s just letting people be aware of the little things. And if, for example, somebody does make a mistake. I made this recently where I put a picture up and I forgot to alt text it, so I put it in the caption. I put up a video the other day, and I completely forgot to caption it. So then the next video I did, I captioned it. It’s just little things like that which you can do in order to make it better. But it’s not trying to make an excuse to not do this work, its’ trying to ensure that we are being as inclusive as possible, because the reality is, everybody thinks that if you are black and queer, or a black woman, that you are just a one note body. But we all have different attributes, there are different things that are going to limit us in different ways. So we need to be sure that we are being inclusive of all of these things, including chronic disabilities. Because by making it more inclusive, you in turn are then going to actually have a better form of diversity of thought. Jaz, can I just say that it’s been an absolute pleasure to be able to chat with you about this, and thank you for agreeing to do this podcast with me. Because, like, you know, you could have easily said no, and you were like, “Nah, I’m up for it.” So the final question I have to ask is, where can people find you on the internet, or do you have any projects that you want to, I guess, highlight or promote, or any resources you want to talk about based on the disabilities that we spoke about today?
00:27:35 Jazmin I suppose, you can find me on Twitter, so that’s @scarlett_jazmin, that’s the main place you can find me. When I do have the time and can be bothered, I do have a blog that I like to talk about my volcanoes and videogames stuff. That’s at PhDVulcanology.wordpress.com. In terms of my disability, juvenile arthritis, usually if you Google it it will come up, but one charity that I used to volunteer for and also be on the committee for that really gives a lot of good resources is CCAA, that’s it’s new name now. But it originally was Children’s Chronic Arthritis Association, and you’ll recognise it, because it’s mascot is a penguin.
00:28:36 Craig We love a penguin mascot, in any way, shape, or form. So for those who are listening, we’re going to be putting all those details in the show notes, and that means then you’ve got an option to also be able to click through, and then afterwards then follow Jaz and her brilliant work, as well as also being able to understand some of the things that we’ve been speaking about today. Again, Jaz, thank you for being able to take some time to actually have a chat with us. I would also like to thank Pride in STEM for providing us with the space for having these conversations. As well as to our lovely production team, Matthew Young, Alfredo Carpinetti, Ashavane Dabe, who’ve been brilliant in putting this podcast together, and making it come to life. If you can, please rate your podcast wherever you get your podcasts. And finally, if you would like to find out more about Pride in STEM, and the work that we do as an organisation, you can follow us @prideinstem on both Twitter and Instagram. I’m your host Dr Craig Poku, and I hope to see you soon.