In Beyond the Pain Scale: Embodied Research, host Dr Heledd Jarosz-Griffiths speaks with Dr Neko Mellor about how chronic pain, disability, and neurodiversity shape both research and writing. Drawing on her PhD in English at the University of Leeds, Neko explores how twenty-first-century women authors represent pain, reflecting on the limits of medical pain scales, the challenges of articulating ongoing pain, and what it means to research through the body. Blending literary analysis with lived experience, she examines how pain is expressed, understood, and misunderstood—both medically and culturally—and what this means for disabled and neurodivergent researchers navigating academia.
Content note:
This episode discusses chronic pain, disability, neurodiversity, and lived experience in research. These themes include personal reflections on illness, embodiment, and medical care. While the conversation is supportive and aims to promote understanding and inclusion, some listeners may find aspects of it emotionally resonant. If the issues raised in this episode affect you, please see the support and resources linked below.
Key takeaways
🔹 Beyond the Pain Scale
Neko critiques conventional pain measurement, showing how numerical scales capture intensity but overlook meaning, context, and emotional reality.
🔹 Writing Through Pain
Exploring memoir, lyric essays, and autoethnography, Neko reveals how narratives struggle to contain ongoing pain—and how resisting neat endings can be an act of truth.
🔹 Embodied and Neurodivergent Research
Drawing on her lived experience of Ehlers–Danlos Syndrome, fibromyalgia, ADHD, and dyspraxia, Neko describes how embracing embodiment reshaped her research approach and challenged academic conventions.
🔹 Inclusive
Supervision and Support
The discussion highlights the importance of flexible supervision, awareness of Disability Services and DSA, and the power of compassionate academic relationships.
🔹 Community and Connection
From peer networks and online neurodivergent communities to the grounding comfort of pets, Neko reflects on how connection sustains disabled researchers.
🔹 Towards an Embodied
Research Culture
The episode calls for academia to value lived experience as knowledge and to make space for embodied, experimental, and inclusive methodologies.
Beyond the Pain Scale: Embodied Research — with Dr Neko Mellor
Content note:
This episode discusses chronic pain, disability, neurodiversity, and lived experience in research. These themes include personal reflections on illness, embodiment, and medical care. While the conversation is supportive and aims to promote understanding and inclusion, some listeners may find aspects of it emotionally resonant. If the issues raised in this episode affect you, please see the support and resources linked below.
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Podcast Intro: Welcome to the Research Culture Uncovered podcast, where in every episode we explore what is research culture and what should it be. You'll hear thoughts and opinions from a range of contributors to help you change research culture into what you want it to be.
Heledd Jarosz-Griffiths: Welcome to the Research culture and uncovered podcast.
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The topic today is close to my heart. My mum now 82, has lived with chronic pain for over two decades after years of back and neck problems, including a recent serious neck fracture and a spinal cord compression. She still insisted on traveling to France for a family holiday. Afterwards, her mobility collapsed, and she now wears a permanent neck collar and needs 24 hour care. And yet her grit is extraordinary. She loves to travel and to see the world, and she has seen the world. And for her 80th birthday, she went to Cambodia and Vietnam with her 90-year-old best friend who struggles with her sight, “you be my eyes and I'll be your legs”, is what they joked about.
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She smiled and said about eight, and I suggested that we should stop, but she insisted that we should carry on. Her resilience is inspiring, but it can also mean her pain is misunderstood. She doesn't want to cause a fuss, so she just grins and bears it.
I'd just like to welcome you Neko to the podcast today.
Would you like to say hello to our listeners?
Neko Mellor: Yeah. Hi. Thanks very much for having me.
So Neko, your work really examines how pain is seen and measured, not just medically, but also culturally and personally. So, this brings me to my first question. You've written about pain scales and assessment. What issues do you see in how pain is measured and how do these affect disabled on neurodivergent people?
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And I guess with a backdrop of constant pain, it can also limit that because it, it forces you to focus on one specific snapshot, which doesn't necessarily give a good impression of what it's like to live with that pain long term, or how this new sensation might be making its way, across, in contrast to that ongoing experience of pain.
I think in terms of neurodiversity, I'll draw on my own personal experience here, which is that. I've been told that I find it very difficult or that people find it very difficult to understand my mental state because I often appear quite happy or fine. And there can be this intense inner turmoil going on and I can be absolutely devastated, but nobody would know.
o get that intensity of that [:
I think that although I have disabilities that cause pain and so many other people have the same thing, it's important not to conflate disability and pain. I think that's a really important point because sometimes people can sort of be quick to make assumptions that somebody that does have disability is in pain, and that can lead them to make judgments about that person's quality of life, which aren't necessarily accurate.
It can also lead them to, kind of stigmatized disability because people quite understandably, fear pain and that can cause them to feel more fearful around the topic of disability, so those are the issues that I would say.
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Yeah. So, so your thesis explores how women write about pain. So, what drew you to this topic and, what kind of narratives did you engage with?
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I met lots of people that found it really difficult to articulate, articulate their constant experience of pain. So sometimes I would meet with an individual that had a new diagnosis, a family, or on one occasion I worked with a group of South Asian women with the help of an interpreter. But people were kind of coming to me with the same issues of saying, “well, I can't sit down and cry about it now. “It’s been going on for years, but that means that nobody's believing me and nobody understands how bad it is.
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But when you try to put pain into a narrative and that pain has no ending. I was really interested in exploring what is the effect of imposing an ending on an experience because those are the rules of narrative, so to speak, when that experience continues to outlast the narrative that's been written or published or spoken.
And that's what drew me to the topic and also the sense of what if you have a narrative where lots of exciting things are happening, but the person's just constantly going, right. And then nothing happened for a while because I just had to sit down for two weeks and I just really wanted to see how does that play out in a narrative?
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You've also brought in your own personal experience and embodiment as part of your methodology. So how did your own experience in university and chronic pain shape your research approach?
Neko Mellor: it, it almost seems accidental really. But, I suppose I'll start with when I was working on my introduction in my first year, so I was reading a lot about different things to do with disability studies and the social model of disability and expressions of pain.
ognition and their thinking. [:
But I've never really had that experience. I've never had an inner voice, and so I came to understand that the stomach ache was just my response to the reading and my response to seeing something about me that wasn't being represented in those texts. And so that was a starting point for embodiment, leading me on this journey of approaching these texts and, and reading about different types of experiences and having those experiences in my own body.
And I think I also really, really wanted to draw on my experience of neurodiversity because I think that sometimes in academia we read these Incredibly coherent and polished arguments that seem absolutely flawless. But when you have chronic pain, it could be that you read half a page and you need to have a break, and then you come back to read the next half, and the, the meaning of what you are reading is completely changed because you've, you've had to have that break.
fact that I have a ADHD and [:
A lived experience within the body is such an important way of understanding the world or understanding things like ableism that I just really felt that it was important to try and bring that to my analysis as much as I could and [00:11:00] to sort of resist the narratives of sort of trying to make everything very coherent and polished when it felt really important not to miss those ways to meaning.I wanted to keep them in in there.
Heledd Jarosz-Griffiths: Fascinating. Thank you for sharing that so openly and explaining it really well. I found it really powerfully you've connected your physical reactions like the stomach pain you described answers like your body was reacting to not seeing your experience reflected in what you were reading.
And then the way you've embraced that along with your neurodivergent perspective to shape how you read and write. Its such an important reminder that our ways of thinking and presenting information are deeply embodied and also really unique.
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Neko Mellor: My thinking here is that there is probably quite a lot of work out there where people are drawing on their experiences of embodiment and researchers such as Tobin Sebas, for example.
He was a disability theorist who claims that, the experiences that we have as disabled people are theory. And so that these are really important insights which allow us to unpick discriminatory experiences and things like that. And so I would say that it is really important to reflect on those and bring them into our analysis and things like that.
I think in terms of research culture, I think it would be quite positive to share resources and have, you know, things like chapters and things which people have found. Particularly speak to what it's like being a disabled researcher. I think having an open conversation and sharing those resources in a university platform or something like that would be really beneficial.
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And just acknowledging that there are different ways of writing a thesis or doing academia. Like, you know, we think of this like linear process that comes out and everything, but what if, what if there was something different? And I was very fortunate that both of my supervisors have always been really supportive and really interested in my writing and giving me that space to try different things or recommending texts that were sort of unusual. That spoke to my own interests, and I think, you know, they, I'm, I'm very grateful for them for doing that. And I think that, yeah, certainly encouraging those approaches and sharing those resources would be really beneficial, I think.
experiment and find your own [:
I think that's brilliant. I can really relate to what you said about the expectations of academic writing, feeling so linear and polished. especially coming from a STEM background where they often feel more rigid and there's sort of less room for that personal expression or alternative sort of styles or forms of writing.
It's inspiring to hear how you've managed to bring your own voice and approach into that space and really open that door for others to do, to do the same. Thinking about supervisor relationship, as you said, support makes such a difference. Supervisors often want to help but may not always know how best to do that.
So what kind of support or awareness do you think would make the biggest difference for disabled PGRs?
Neko Mellor: well, [:
And what's really helpful with that is the fact that I think supervisors or, or certainly the school or faculty that a student comes from would receive a sort of support summary about that student and all of the different elements of support that they are receiving. And hopefully that would be a really good clarifying place to start there.
I know that the university does have some fantastic resources online. I think just this morning I was looking at the ODPL website, which lists really comprehensive things for how supervisors or academics, personal tutors even can support their students. And I think that, that, that's really, really helpful.
t's just important that it's [:
I was really fortunate to have a great relationship with both of my supervisors. Amelia DeFalco and Stuart Murray. They've really understood everything I've been going through throughout my PhD I've had lots of new diagnoses. I've had three surgeries, and they've always fought for me to have the time.
I need to have a break and to rest and things like that. They totally get it whenever I say, oh, I'm really sorry, but I just need a bit a, a couple of weeks more to polish this section that I've been struggling with. They always. Allowed me to have that time, or they encouraged me to meet them occasionally without a submission so that we could just check in and share resources or readings or things like that, which was really, really supportive and helped me to stay engaged even when I had this like internal battle with what I was trying to write about.
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So thanks very much Jenny. But yeah, I would say a combination of looking at the support summary, contacting disability services or ODPL for any kind of professional input there and also just keeping the conversation going with the student around what they need, I think is probably the best way to, to manage that.
Heledd Jarosz-Griffiths: That's absolutely fantastic summary of how to approach all the different resources for students and to support supervisors being able to have those conversations. But also, you mentioned, that sometimes not everybody feels they want to share or, or feel that they're in a place where they, they can.
rtant then to navigate those [:
Thank you for sharing that as well and for your shout out as well. thank you for all of those, practical insights in, into the kind of support structures that are available. but I also know that a lot of support also comes from peers rather than from these kind of formal structures. You’ve spoken a bit about peer support and community, other people being involved in supporting you. So, what role does that play in navigating academia with disability or chronic [00:19:00] illness?
Neko Mellor: yeah, I think it, it plays an enormous role really. So, I think, I feel that community can be anything.
It doesn't necessarily have to be the people in your year group or people doing the same program as you. I found a lot of community just from the, the books I was reading and feeling that my experiences were represented, even experiences that I never knew another human soul could experience that particular type of pain or that symptom, and that gave me a lot of solace.
I think also I, yeah, I think that I've been very fortunate as well to have a group of friends on discord from all around the world who are all neurodivergent. We all met primarily through this A DHD app. there's a group of us from Denmark, Puerto Rico, the UK, the US and we just congregate on there, share to-do lists, try and motivate each other, and that's been really, really powerful.
because we all sort of just [:
This, this might sound a bit strange, but I think it's really impossible to understate the importance of having. A place to share pet photos. I think that really gets me through the day and certainly with that group of friends, we're all sharing pictures of our cats and dogs and, and I've said hello to my supervisors dogs on teams as well, which has definitely helped me to keep going.
And so, yeah, I would say that, community can be anything. It's certainly possible to have strong community by. Connecting with people you share an office space with, or people from disability services that work with you, but it can also be things that you read. It can be writers, it can be art, it can be anything like that as well.
So, yeah, I'd, I'd encourage people to really try and find that thing that you can connect with and keep that close to you as you do your PhD.
today or say a quick hello. [:
I think we are, wrapping up to the end of our conversation now. I think we've shared so much insight into, into disability and pain and how it's experienced and it's such a, an important topic and I really loved to hear you speak about it as well today and I'm sure that our listeners have too, so I just really want to, explore, what's next for you?
Your PhD is finished. Is there any new directions or interests that you are currently exploring?
Neko Mellor: Well, I think that there is certainly a lot to think about in terms of representing pain. I think that there was one thing that came out from my research that was an unexpected connection, which was that a lot of writers were using the metaphor of a ghost to explore their experience of having constant pain.
nce with no end. So it would [:
Sorting out the garage and things like that and giving my body and my brain a bit of a rest before I figure out the next thing. And I think that's an important thing to note too, as a disabled researcher, is that you've got to be well, and so that's my current focus for now. And cuddling lots of cats, of course.
Heledd Jarosz-Griffiths: Yeah, that sounds, yeah, absolutely perfect. You definitely need that time out. Even for a PGR who doesn't have a disability, just being able to have that. Break. Absolutely. And that shut off time 'cause it's such an intense period of time in your life, for me it was quite a while ago now, but I do remember it well.
r experiences with us today. [:
So, you know, your work not only deepens our understanding of how pain is represented and misunderstood, but also challenges, research culture to be more inclusive, more embodied, and more responsive to the lived experience. If you'd like to learn more about Neko's Research or read her article in medical humanities, you'll find a link in the show notes.
And if you're a researcher navigating disability or chronic illness, we hope this conversation reminds you that your experience matters. And that there's a growing community working to make academia more accessible and more humane. So, thank you for listening, and we'll see you next time. Thank you.
some love by dropping a five [:
Thanks for listening, and here's to you and your research culture.
