Building a Fulfilling Life with Chronic Illness | Jo Southall

In this episode Occupational Therapist Jo Southall talks about her experience of living with Ehlers Danlos Syndrome and POTS. She shares how her diagnosis lead to a shift in careers, the power of lived experience in healthcare, and insight into living a more fulfilling life.

🔗 You can learn more about Jo and her work here: https://jboccupationaltherapy.co.uk/.

Please note this Podcast is provided for general information only, it does not constitute as medical or professional advice. The views expressed by guests on this Podcast are their own, their inclusion in this Podcast is not an endorsement.

Intro and outro audio by podcast.co.

[Image description: The image has a light cream background with a image of two blue hearts to the left. To the right, bold black text reads “Finding a Partner While Living with Disability: Challenging Narratives” with the guests name, “Saima” written below in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the [Image description: The image has a light cream background with a image of Jo Southall smiling at the camera. To the right, bold black text reads “Building a Fulfilling Life with Chronic Illness” with the guests name, “Jo Southall” written below in soft teal. Under the text is a teal play button and a horizontal soundwave graphic. At the bottom, a circular logo shows a sky-and-trees scene with the words “Alive with Chronic Illness” around the edge.]

Transcript

Elizabeth 

In today's episode, I'm joined by occupational therapist Jo Southall. Thank you so much for joining me today, Jo. It's lovely to have you on the podcast. 

Jo 

Thank you very much for having me. Excited to be here. 

Elizabeth 

I'd love if we could get started if you tell us a bit about your health journey. 

Jo 

Yeah, so I was one of those really adventurous tree climbing, falling off things type kids. There have been a few health issues that sort of lingered in the background. I seem to be a little bit more accident prone than I maybe should have been, but it was all kind of put down to just, you know, I chose dangerous hobbies or, you know, I wasn't paying attention or whatever. And it all really started to kind of literally and metaphorically fall apart when I was in my late teens. So I, while I was doing my A-levels, fell off the asymmetric bars at gymnastics and dislocated my left radius and ulna in opposite directions without a fracture, and then had a massive allergic reaction to morphine and got blue lighted to A&E, which was very exciting and traumatizing and all kinds of other things. And that for me was the start of the injuries that just didn't kind of get better. Before then, there'd been a little bit of a low back thing and a little bit of an ankle injury or whatever, but that was the one that really led to my diagnosis. So I ended up in physio for that and basically was complaining to the physio that I'd lost a load of range of motion. And the physio was going to know what you're talking about, you've got full range of motion, this is perfectly normal. And I went, yeah, but my other elbow kind of goes backwards a bit. So like this side feels really stiff by comparison. And the physio was a little bit like, oh, I think maybe we need to try and seize the rest of you up to match your new elbow's range of motion. So she got me to strip down to my pants and did all kinds of bendy, flexible type motion things, and then strongly suggested that I go home and Google hypermobility disorders. And I did. And all of a sudden, my entire life and medical history and my mum's life and medical history and my grandmother's life and medical history all started to make a heck of a lot more sense. So, yeah, that was the start of it, really. And I went to my GP and said, I think I've got some kind of hypermobility thing going on. And he kind of said, well, I don't know really anything about it besides bendy joints. And I was kind of preparing myself for the brush off at that point. And what he actually said was, so let's take 2 weeks, and we'll both go away and do some research, and then we'll come back with a plan and go from there. So in 2 weeks time I went back and said, I'd like to be referred up to Uclh, and I'd like to try some kind of like amitriptyline type thing for pain, and I'd like some anti-inflammatories on repeat prescription. And he went good. Those were all the things I was going to suggest, too. and that was that I was on my diagnostic journey from there, really. 

Elizabeth 

Did you have to wait quite a long time for the referral? 

Jo 

This was way, way back. So I think I was waiting about 18 months, maybe. And I saw the sort of registrar, was it registrar? Somebody, I saw somebody from the team and they were basically like, yeah, joint hypermobility, definitely a thing. the original diagnosis was benign joint hypermobility syndrome or some such combination of words that doesn't really mean anything and isn't really used anymore. But it kind of developed a few things later on and just sort of became hypermobile EDS over time basically. But yeah, so it wasn't too long away and it was a really smooth kind of journey and then like onward referral to all the sort of services I needed after that as well. So I think I got quite lucky with my GP and I think I was very lucky having a mum who was such a strong kind of advocate for me getting good care and getting listened to. So, yeah. 

Elizabeth 

Yeah. So how old were you when you were diagnosed? 

Jo 

I was 19 when I got my hypermobility diagnosis. I developed POTS at 21. Well, I developed POTS at 20-ish and at 21 got a diagnosis. That was a slightly longer wait, and a much less successful series of tests and interventions. But yeah, that was sort of sorted eventually as well. But yeah, it was a little bit of a rockier journey, which was frustrating, because I knew it was parts based off. you know, having seen other people with exactly the same symptoms presenting in the same way, having the same challenges. But it took me 18 months to get a tilt table test. during which time I was really actively unwell, like a lot of ambulance visits quite a lot of the time. So yeah, that was frustrating, but I'm very much kind of over the other side of it now. So yeah. 

Elizabeth 

Yeah, it is a frustrating process sometimes, and especially when in the meantime, you're dealing with like needing to go to hospital or having to go on like have an ambulance because of these symptoms and because they're not controlled. And so was that a lot better for you once you got that diagnosis? 

Jo 

Basically, it was a lot better for me once I got medicated. So I knew the diagnosis was going to be POTS. I'd done the poor man's tilt table. You know, I was tracking my heart rate with smart watches. I knew what the symptoms were. You know, I was doing all the self-management stuff, but yeah, it was just the symptoms were severe enough that I wasn't ever going to make any progress until that was medicated into submission, basically. So. ended up getting medicated for that and for like migraine prevention at the same time. And that combination effect was a game changer and I could kind of rehab myself out of the trench I dug into at that point. So yeah. 

Elizabeth 

Yeah, I think it does like when you get that medication that balances the symptoms so that you've not got that spike of the heart rate and it's just because I've got POTS as well and it's really difficult isn't it when you just don't think for a second, you stand up too quick and you get that massive jump in heart rate. It can be quite well, it's so unpredictable and it's at that point if I'm not on medication, I can't do anything with it. It just goes up. 

Jo 

For me, the hardest that I found was that the The symptoms, as in the things I might recognise as being, oh, I'm pushing my limits, I should sit down, never kicked in at the same time as the tachycardia. So I would have wildly high, like heart rates in the 200s on a semi-regular basis and feel absolutely fine at the time. And then 20 minutes later, the kind of adrenaline come down would hit me and I'd realise I've drastically overdone it or made a serious error in how I stood up or how I exercised or what I was doing. So yeah, that was, that was a problem. But I think now that I'm a lot more in tune with my body and now that my heart rate stays very firmly under 200, things are considerably better. Yeah, no, absolutely. 

Elizabeth 

I think being in tune with yourself really helps, isn't it? You get to learn your patterns over time as well. 

Jo 

Yeah, definitely. And that's a lot of what I do in my work as an IT really is sort of advising on that, but it's I think it's natural to a certain extent if you live with a painful or unpredictable or exhausting or just generally difficult to treat kind of condition. The default response is just to push through. And to push through, we have to disconnect ourselves from our bodies or it's just too unpleasant to do. So the lack of support and the lack of education around self-management, particularly for people who are going through a really long diagnostic journey, Our default response to protect our selves is just to disconnect from our bodies. And it takes a lot of time to unlearn that. And I'm still unlearning that now, despite the fact that I remind myself of it constantly at work. You know, I still need that reminder of my own life as well. 

Elizabeth 

Yeah, because like you said, when you're in that space and you're in a lot of pain all the time, and particularly if you maybe have a condition that's not being managed right now or that management is not working for, being in your body and being present, it feels unbearable. 

Jo 

Yeah, definitely. And it's so disruptive. So particularly if you've got responsibilities that you can't be distracted for, if you've got kids or you've got pets or you've got a job that you really have to focus on. there's not really much else you can do until somebody gives you the tools to manage differently. So, yeah. 

Elizabeth 

It is definitely about doing what you can with what you have at the time and then building where possible. And because obviously you do work as an OT, so I'm interested to know about that journey. And because you got diagnosed relatively young, I presume maybe your health conditions had an influence on your journey to become an OT. 

Jo 

Yeah, so my original career path was in outdoor adventure. And I was actually working as an outdoor adventure instructor when I got my diagnosis. So I just had a series of increasingly ridiculous injuries that just wouldn't get better. And it got to the point where, and like in hindsight, I feel very differently about this, but at the time I felt like I was being kind of let go on failure and it wasn't, you know, well, but like colleagues would find me in tears at work regularly. I would get through the day and then be in so much pain. I had to use mobility aids in the evenings. And then it was just, it was really, really difficult. And that was not in any way a sustainable career path for me. So I was kind of looking at retraining in something because my whole life had been adventure or sport or, you know, I'd been dance, gymnastics, you name it. If it was adventurous, I'd give it a go. But obviously that's not really a particularly well paced injury-free sort of lifestyle to live. So it was mum actually who sort of suggested it. I've been talking about a hand therapist I'd seen as a patient and he had really, really helped me to understand my hand function. He'd been really great at like explaining what he was doing as he was doing it and the reasoning why. And it was just the most kind of engaged and the most It was the appointment where I'd had the most choice. Like, you get used to healthcare professionals doing things to you, but he did it with me. And that was a big difference for me in a lot of my healthcare. And yeah, he was a huge influence on me choosing to become an occupational therapist. And I kind of thought, well, I couldn't do that, could I? And Mum went, well, actually, if you look at the entry requirements, you're only like 10 credits short. So I went to the Open University and got myself 10 credits and off I went. And that was that. But it was really nice actually. I saw him a few years ago and got to catch up. It was just like a random day out. It wasn't even near a hospital. So it was really nice to be able to see the person that sort of started my journey and say thank you really. So yeah. 

Elizabeth 

Yeah, for inspiring you. I think that's amazing. And I've had a similar experience with physio. I feel like it is very much like they can work with you and you're doing it together and it's not something that's just being done to you. You're an active participant. It's very empowering, I find. 

Jo 

Yeah, definitely. And that's a huge part of what I love about my job, really. It's the ability to do things with people and to give people choice over what they want to do. 

Elizabeth 

Yeah, absolutely. I think when you've got health conditions, sometimes you don't always have much choice or also don't always feel like you have a choice. Some doctors can feel quite intimidating and maybe it makes it difficult to say no to things you're not sure about. But yeah, having something like physio, which is so important and we bring into our lives like often on a daily basis, being an active participant in that and the creation of what your physio schedule is going to look like as well, I think that's so important. And yeah, it's lovely to have a part of healthcare that is so empowering for so many people. And so I think it's just nice within a dynamic where it doesn't always potentially feel like that, there are there people there and there are people who are inspiring us, inspiring us to follow in their footsteps as well. 

Jo 

Yeah, definitely. And I've met some really amazing professionals, occupational therapists and physios and teachers and all kinds of things who do feel that way and they are aware of how important it is for people to be a part of their own healthcare journeys, not just to be like a passive participant. And I think giving people that choice and that ability to engage is huge. And it's such an important part for people who are going to have that. You know, I don't see a physio weekly, but I do physiotherapy daily, you know, so I'll go three, four years without seeing a physio sometimes, but What they teach me and what we do together and what I learn from them stays part of my daily routine and will do for the rest of my life. Likewise, you know, my hand therapist or my rheumatologist, like to get people to buy into what they need to do from a rehabilitation perspective, we have to make it easy and we have to make it a choice that a person can make over and over again to be a part of that and to choose to keep doing that. Otherwise, as soon as you're discharged from hospital, you stop. Those routines aren't maintainable because they're not designed for you and with you. 

Elizabeth 

Yeah, and that makes it much more difficult to keep up with and actually feel motivated to do if it just feels like it's something you're pushing against all the time. 

Jo 

Definitely, yeah. I think my experience as a patient really drives that home importance wise. 

Elizabeth 

And I think just my perspective, because I've done sessions with you, I feel that I trust you maybe a little bit more because I know that you understand how hard it is some days to get the physio in and how difficult it can be to implement those things. And I think knowing that you have that lived experience for me really helps that relationship because it feels more comfortable. And I feel more comfortable being to say, actually, some days I'm really struggling to even get out of bed because I know that you're, to a level, you'll understand what that's like. 

Jo 

Yeah, I definitely think it's made me a better occupational therapist and I have a better understanding of how difficult it is to exist with a really uncooperative body or a busy life or both. And yeah, it is frustrating at times. And there are days where you actually, you don't need to be doing any kind of active rehab. What you need to do is go to bed and feel better. But I think that's an attitude that people who've never experienced fatigue won't necessarily understand. And there is a big difference between, oh, I'm quite tired because I had a long day and my brain won't work well enough for me to choose what I want to drink. So I'm not going to drink anything. The kind of brain foggy fatigue that stops your ability to function. And I think for me, that's why I'm so passionate about having student placements, particularly having interprofessional ones where I've got student physios come in, although I'm not a physio. I have a lot to teach in terms of how physios can understand the rest of a person's life. And it's been really amazing to see that understanding develop and to help shape the journey of a few more professionals who do get it a little bit. And it's particularly amazing to have like students with long-term conditions because often until they come here, it feels like that long-term condition is just something you have to accommodate. But actually, I see it as an asset. You know, it's something that makes you a better professional, and it's something that your colleagues aren't going to have, and it's something you can't teach. So if we can start reframing that as a thing about you that enhances your understanding of the patient experience, often it's also helpful from an acceptance perspective. I know it helps me to be able to go, well, if I'm having a really awful day, you know, these are the things that remind me what it's like for my patients. These are the things that help me to be empathetic and understanding and help me to make reasonable choices, clinically speaking. And yes, it sucks. And yes, using all the active pain management tools is, you know, a time drain and it's frustrating and it's often expensive, but it does also make me a better therapist. 

Elizabeth 

Yeah, I think so. And I think it is, it does, you said about acceptance and personal acceptance and because I work within the disability sector and what's helped me a lot is seeing that my lived experience informs the way that I work now and I can make a difference for people who were in the same position I was in when I was a kid. And I can use some of the positive experiences. I can kind of use those because I know things that worked well. And I know what my negative experiences were as well. And I can almost reframe them and taking that power back now as an adult, because I had obviously as a child, I was very powerless, but as an adult, I'm not. So actually reframing and thinking the lived experience I bring has a value that, like you said, cannot be taught. I think that can be very empowering and it has been for me. 

Jo 

Yeah, I love that. I think that's really... And it's such an important thing to consider in terms of like representation everywhere. If we have professionals scattered throughout every single field who get it, that knowledge is so much more widely available and it has such an impact on so many people just to have that base level of understanding about disability just scattered throughout every industry we come across. And there is something really, really healing about being able to look at somebody whose journey could have been exactly the same with yours, but is now easier because of something you've done or something you've said. 

Elizabeth 

Yeah, I think that's really empowering. And I often think that some of the positive experiences that I had from my childhood, I probably had, and I wouldn't even realise that they were probably contributed to by people who'd maybe been in the same position as me and they'd fought for change, which meant that I was able to have the opportunities I was able to have. So it feels like it's part of that cycle and you're just giving back to that cycle and helping the future generation hopefully grow into something and have better opportunities as well. And it's something that I'm very proud to be part of. 

Jo 

Yeah, me too. Completely agree. 

Elizabeth 

So how did you find the journey of doing your OT training alongside managing your health conditions? 

Jo 

Challenging. Yeah, it was hard work. So my original plan was to do a four-year part-time degree. It ended up being five years and a bit. So I did three years part time, quite a few ambulance trips, a lot of miles on the road, you know, a lot of it was difficult. And then I had a fairly major health crash when the whole pot thing kicked in. And it took me Basically I was in hospital for like six weeks and then had to kind of relearn to walk from scratch, which took sort of six months of fairly dedicated rehab and not much else. And then I went back to university, but I went back sort of slightly more full-time, but with mum as my full-time PA. So she would take me to lectures in the morning. And then she went and did an OU degree just because why not? So she'd go to the library and do her own studying things and then pick me up after classes and like, make sure I got food before I fell asleep again almost immediately afterwards. But so yeah, there were definite challenges and I think placement was definitely something that was very hard work. The number of accessible healthcare placements was low. Particularly for somebody who doesn't drive. So we had to get a bit creative with some of the placements I did. And there was a certain amount of placement related burnout every single time. I sofa surfed for like a 12 week placement. And was just, I was sort of, so my wheelchair power assist wheels do like eight miles on a charge on average. I was charging them every night. So I wasn't doing eight miles, but I was doing, minimum of five, I would say, like up and down corridors around this like massive teaching hospital and then having to get buses back to friends' houses and sort of sort of sleep on the sofa or sleep on beds or wherever I could find. It was hard. I definitely think now that I'm qualified, it's considerably easier and I've highly modified my job to meet my needs to the point where if I had to go back and do an undergraduate degree now, I don't think I could. So I did it. If I had to do it again, I don't think I'd make it through. I honestly don't. So it is something that I've brought up with various universities at various points when discussing potential placements for disabled students. The training is so much harder than the job. So much harder. And there's a lot of work to be done in making it a more accessible field to get into. Because, yeah, it's a challenge for sure. 

Elizabeth 

And I think it's important to highlight that challenge because people might be going into these particular degrees of placements and feeling quite daunted. And it might just be that, unfortunately, that path is just not accessible because the placement is not accessible. 

Jo 

Yeah, I think the one and only silver lining that came out of COVID is that virtual placements were a lot more accepted now. So there was a whole generation of healthcare professionals across every field who basically just did virtual placements to qualify. So, and if you did have an in-person placement, you were working some kind of shift covered during emergency COVID work. So there wasn't really time to sit and learn properly and do your reflective practice and, you know, learn about your patient case studies and stuff because everything was COVID focused or it was all shifted online. but in a way that was sort of a last minute panic rather than a deliberate choice to do telehealth. So yeah, it's definitely been an easier thing to say that actually since that, it was almost proof of concept. So I've been doing telehealth work for, this will be my ninth year in practice. When I first started, I'm pretty sure I was the only OT in the UK working exclusively online. Whereas now, you know, it's not common, but that's definitely more than just me. And it's definitely across multiple fields. And I think a lot of universities are a bit more accepting of the fact that online work does count as real work now. And there is a lot you can do with people just by having a really open and frank conversation. So yeah, it's definitely having been in this industry for long enough to see the change now, it's changing in the right direction, but it's frustrating how slowly it's changing. 

Elizabeth 

Yeah, absolutely. And there are lots of services now you can access online, like a lot of counsellors online, but actually to qualify through some of the pathways for that one, you do have to do, only a certain percentage of your placement hours can actually be remote. So you have to do them in person. And that can just make it completely inaccessible to some people as well. And I think that it does add to the complicated dynamic of How do you access services and education when you have a health clinician or disability? How do you find routes to do things? And it's difficult because sometimes you can, but there's times when you can't. And I think, like you said there, if you had to do it again, you're not sure if you could. And I did a placement-based degree for my undergrad, and I'm not sure I could do that again now, actually, if I had to do that again. I don't know if I'd be well enough to actually be able to physically manage the placement. which is, it's quite an emotional thing to think about, isn't it, that happened at that one time in our lives that we were able to do that. And also to know that for a lot of people, it's not possible. But I think the work that you're doing and offering different placements that can be done remotely, hopefully is going to help to bridge that gap a little bit. And I guess for your students, can they do all of their hours online or do they have to do some in person as well? 

Jo 

I don't know anyone who's done... So basically it's a thousand hours to qualify as no T. I don't know anyone who's done all of that virtually. I know somebody who's done two out of three placements online. But that and but that was with like a lot of reasonable adjustment accommodation type fight for it meetings. So there are people out there who are fighting the fight for accessible placements, but I think There's still a mindset, and I understand why, and it's totally justifiable to a certain extent, but there is a mindset in terms of course, like production, that what we're seeking to create are more new graduates who can immediately go into rotational postings on the NHS. That's the attitude is that everyone will end up on a rotational posting for a couple of years and then they'll specialize in something. So the training, the placements, the education, the assignments, everything gears you towards that being your assumed career. But one of the things I've talked with disabled students about a lot is the fact that if you are not necessarily limited, but if to be your best self, you have to have a very specific set of criteria. Your job has to fit into that. So for me, I know if I want to work in July and August, it needs to be somewhere cool, and I need to do it laid down. I don't drive. I can't use public transport independently, at least 50% of the time. So I had to work from home. So I knew I would be working from home. I knew I would be self-employed from about halfway through my career, my training, sorry. If we had assignments that were fairly open-ended, I would target that assignment towards something that would be useful in my career. So, one of the final essays I did was like a service development thing, and I did it around designing an online fatigue management service because that's what I knew I was going to do, you know? So, for me, there was never any Never any chance, any likelihood that I would be dropping, you know, got my degree, floating out of university, and I would immediately go into a rotational posting. It wasn't going to happen. I did not have the capacity for it even then. And certainly not a sustainable long-term capacity for it. And I want to be an OT for the rest of my life. So it needs to be a career path that is not going to burn me out. So I started planning for that from about halfway through my degree. But that was a very different mindset to the way that the course is designed and the way the lecturers are used to working and the way the other students were working. So I think there needs to be a little bit of awareness that for some of us as professionals, we have to specialize because entry level postings are too physically demanding, whereas specialist work can be highly modified a lot more easily. So, and this is a repeat problem for people that I've worked with. They're in jobs where they can't do the physical kind of grunt work, but could do the specialist stuff, but you can't get promoted past the grunt work level because of one random physical criteria that you can't do. And yet the specialist work will be so much easier for you and the career path just doesn't allow you to bypass it. And it's endlessly frustrating because there are plenty of people who really enjoy the physically demanding aspect of whatever career path they're in. You know, there are people that enjoy being on the go, heavy lifting, moving, doing all that stuff. I don't have the energy for that. I will very happily give over all of my heavy lifting to somebody that actively enjoys it. So I think there's a lot of kind of systemic structures that we need to pick apart a bit and work out whether or not they're actually doing us any favors or whether what we're doing is just kind of living in a system that doesn't actually make anyone happy. 

Elizabeth 

Yeah, and I think that's a very good point because it's just a lack of flexibility there. And like you were saying, getting up through often those entry positions, which are really difficult, really physically demanding, even though they're referred to as entry positions. But you have to go through that and you're always expected to do years at this sort of stage when that next level would be more accessible. And perhaps it's about reframing as a society how we view work and how we view different positions and how we sort of think of, oh, you can't do this unless you've, I guess, almost in a way, like, because some people do really well in really demanding roles, but not everyone does. But like, you almost have to suffer a bit first to be worthy of something that's a bit more comfortable. And that narrative of how that plays out, I think that's something that we do need to challenge because there are roles that are more accessible at different points. And I think to a certain extent, I can see why the experience would be needed and why you might need to take years getting that experience. But if you're specialising in something and if you can get to that level of specialisation and then it's accessible, why can't that be a smaller gap? Why can't there be different ways of achieving that? Why can't you say specialise a little bit earlier, but go through a bit more of a training process? Why can't there be that flexibility? 

Jo 

Yeah, completely. I think there's these kind of assumed hierarchies in society where we Firstly, assume that everyone wants to get a career and then immediately progress onto a better version of that. Some people like their jobs just the way they are and have no intention of becoming a manager or a team leader or anything. My partner's one of them. He loves his job. Absolutely loves it. Does he want to be a manager? Absolutely not. And yet there's a compulsory yearly kind of chatting thing to see if anyone wants to progress up the chain. And every year he walks in and goes, still happy, thanks. And they go, great, fine. And that's the meeting over. Whereas somebody who wants to progress really, really quickly could have his slot and theirs. You know, they could be getting double the mentoring, double the support in the way that they want to. And these weird hierarchies persist in healthcare as well. So there's an assumption that walking is a fundamental skill for life. And if you cannot walk, you cannot do anything else. So if you've lost the ability to walk and you're doing physical rehab to try and gain that back, the focus is always on walking and standing. And I'm going, that's great. I suck at walking, but I'm actually a bit better at dance or rock climbing or swimming. Can I skip the walking part of rehab and focus on the things that I actively enjoy and that don't cause me anywhere near as many problems? But there's this weird perception that you have to be able to walk before you can run, before you can dance, before you can swim. And yet for so many disabled people, that just isn't true. But we've internalized it to the point where if we struggle with walking, we then feel like we're not allowed to go swimming or surfing or rock climbing or anything else because we can't walk. So you're not allowed to do the fun stuff. And yet the fun stuff is a lot more accessible because you've got different muscle groups in use. You've got safety supports that weren't there otherwise. You've got different points of contact. You're using your arms and your legs if it's just your legs that are the problem. So there are so many ways to modify exercise, but we get caught up on this. Can you walk? Can you stand kind of narrative? 

Elizabeth 

Yeah. And it might put you in a position where you don't even think, or could I do something else? Like swimming is a lot more accessible for a lot of people because you're so supported by the water. And it's also a little bit more fun as well. And those activities that you enjoy more are going to make you want to do them more. It's going to help the motivation. It's going to build that consistency. And actually, maybe you walking is really challenging, but maybe you can go swimming and you can build that into your routine. And that comes up and actually really empowers you and builds up those muscles. 

Jo 

Yeah, definitely. And there's this huge difference as well between can I walk around my own home whilst carrying just my phone and a mug? Yeah. Can I walk back from the shops carrying two bags of shopping? Absolutely not. So when we talk about like mobility aids as an example, people get like, oh, you can walk, so you don't need that. Okay, well, you can walk, but you still drove to the supermarket. So do you know? Yeah, absolutely. It's the same thing. And we need to just get more flexible with our thinking in general. do you need mobility aids during the day so that you can dance in the evening? Great, go for it, do the thing, have fun. And yeah, we need to apply that level of flexibility to exercise, to education, to everything, because we've got this one-size-fits-all society and what it actually does is fit almost nobody. 

Elizabeth 

And I think that is a really good point, is that it's not really working for anyone. There may be a very small, small group of people that the current society works for, but actually for non-disabled people as well, it's just not. It's not working. No one's having a good time right now. 

Jo 

I think this is what I really like about the universal design concept. So creating systems that are inherently adaptable to suit a wider range of people. If you've got something that's height adjustable, you know, for wheelchair users who sometimes stand as an example. It also suits taller people, or it suits somebody who overdid it slightly in the gym and has really horrendous doms and can't get off a chair the next day. If you get pregnant, but your workspace is already adaptable, you can keep working for longer with less back pain. Yeah, I think the thing that always I don't know if I heard this somewhere or if I made it up or whatever, but like disability is the only minority group that anyone could become part of at any time. So to prepare structurally as a society for the fact that we're all going to get old or at some point get injured or get pregnant or, you know, just have a little bit of a twinge or be tired after you've had flu or something. We're future-proofing society for what we're all going to need eventually, but it also allows for the fact that those of us who maybe got a little bit fatigued before we got old can continue to use those systems in the meantime. 

Elizabeth 

Yeah, and that way we are like we're future-proofing and preparing ourselves for our own future, but also making society more accessible at the same time. And it is, I think, I can't remember what the statistics is now, but it's a high portion of people, because I always, because society is so inaccessible. Whenever I read statistics about the percentage of people that are disabled, I'm always surprised by the number, because I think, but then why is it so hard to just get into a shop? Why is it so difficult? Why are buses so challenging to get on and off when there are such a large number of people who need that adaption? And it's such a significant portion that really it should just be, it should just be standard anyway. But It's just the question of like, why do we not do this? And what is it within our society that kind of makes us resistant to that change? And then actually having design with that in mind, thinking about it when we do things. Because I guess as a disabled person, whenever I'm doing anything, I'm thinking about accessibility. If I go to a building, we're thinking about maybe doing an event there, I'm looking around thinking, OK, is this wheelchair accessible? Is there some steps? Is there a rampage of steps? Is there a lift? And I'm asking myself these things because of my parting my lived experience and especially the sector I work in. But I suppose for maybe a lot of people perhaps who are designing these spaces, maybe they're not thinking about this. 

Jo 

I think a lot of it is habit and lack of representation. So for somebody who maybe, you know, younger aspiring architect types who happen to have got really lucky and not have any major health issues, They've not had their own kids. They've not been particularly tall or particularly short or, you know, they haven't had a disabled family member. Their exposure to accessibility is minimal. And mostly what we talk about is legislative or prescriptive. You know, there's not much of an understanding of how variable people can be. But actually in a relatively short period of time in terms of like community acceptance, we've gone from the majority of severely disabled people being institutionalized and hidden away to full social inclusion. Well, almost full social inclusion. We're heading in the right direction. But that's like, what, two generations? So my mum remembers as a child being told not to look at disabled people because they'd see the pity in her eyes. And her grandmother told her that. That's one generation ago from me. And now mum's got two disabled kids, you know, and she's a grandmother now. So, you know, that's actually really quite a short time in terms of like historic change. It's frustrating for those of us who are stuck in the historic change who are getting the short end of the stick and are not able to access things. But I think if you can look at it from a slightly longer perspective, We've come a fairly long way. However, there are still people who are working who are of the mindset that in their minds, disabled people aren't like a part of society. They're like tucked away in kind of institutional places. Do you know? So essentially what we're waiting for is for the generation of people who don't have an understanding of disability and aren't willing to learn to age out of their respective industries so that new people who have a better understanding are now in leadership positions. And that's going to take like another generation, I think, before we see major change there. But it's why representation, diverse representation across every industry is so important because we do get a better understanding of our communities as a whole if our leadership represents that community. But the aforementioned systemic challenges in accessing education and placements and work and jobs are a bit of a barrier to that at present. But there will be people who get there who are determined to make change and people that are having these uncomfortable conversations and calling out colleagues for doing things that are discriminatory. And I think certainly in the last five years, I've seen a change in healthcare attitudes, definitely. So I think we are heading in the right direction. 

Elizabeth 

Yeah, and I think that's a good point, thinking about the bigger picture of how things have gone. And I feel like it hasn't even been that long since disabled children had the right to even be able to access education. So we have moved forward a lot. And certainly when I was a kid, I remember like I didn't really know what I would be able to do when I grew up because I didn't see disabled people doing things. I didn't see them doing jobs. And so it was a bit of like, oh, I don't actually know what job I can do. Like my dad worked as a bin man. I couldn't look at that and think, well, I can't really lug around bin bag, so that's not going to work for me. What am I going to do? And I think we are moving towards greater representation so that hopefully kids today who are maybe in the same position that I was, actually have more people to look up to and think, oh, I could do anything, but also just have an awareness that they could have a future. Whereas I certainly think for me, I wasn't entirely sure that I could have that kind of future of having a career. living like independently. I had no idea what it was going to look like for me because it felt like what I was experiencing was so different to what I was seeing in my peers and in like my teachers and in the people that were around me and the adults that were around me. 

Jo 

Yeah, there's a piece of theory called life stage theory. And what it basically looks at is the kind of expected experiences of certain age groups. And what you should be dealing with in terms of like that decline in your health, the unreliability, the not being able to trust yourself to function the way you used to, that's supposed to be an experience for pensioners. So for people going through that in their childhood, in their teens, in their 20s, there is a huge disconnect where you look at your friends' lives and you go, well, they're working full time and they've got a house and they've got a kid and they're still not as tired as I am. from doing two hours volunteering work. Like, it's really, really easy to perceive yourself as a failure and to lose hope in the fact that you will be able to carve out a little bit of the world that works to meet your needs. But yeah, I think for me, since turning 30, actually, increasingly, I don't care what people think anymore. Like, I live for myself and I live well for myself, and I try to look at the reasons why I want to do something and what I'm going to get out of it. So that fear of missing out thing, what are you actually worried about? Is it the social aspects? Is it the activity itself? So if you can't go out and have cocktails, can you stay in and have cocktails? More often than not, if I'm hosting, it's a pajama party. Because it allows me to get what I want out of an event, which is time with my friends, socialization, joy, laughs, usually food. I get that without having to actually get dressed and leave the house. So a lot of the time I think trying to work out why we want to do things and what the priority is. What's the important part of this thing we perceive as being a core part of being a grown up? What is it about that that you're missing and how do we get it? 

Elizabeth 

Yeah, rethinking of what is it that I'm looking for here and actually taking some time to delve into that rather than just trying to see it in what other people are doing and try and kind of copy that. Find your way of getting that. And I love the idea of a pyjama party. I feel like I'm going to nick the idea. I'm definitely going to do that. 

Jo 

I think more people should do it, honestly. And like my friends who don't have like chronic health conditions, they're still busy. They work full time. They've got stuff to do, you know, so they actually really appreciate the time to unwind. So pyjama parties tend to go down really, really well. So yeah, I encourage it. I think there are a lot of things that kids do instinctively in terms of self-regulating, self-soothing, you know, modifying activities to be cozier. We should stop teaching them not to do that. And we should just keep doing the kids stuff because it's better than the grown up stuff. 

Elizabeth 

Yeah, I completely agree. Definitely. And I think it is just about having fun with it as well. there's nothing wrong with wanting to just have some fun and be comfortable. And I think sometimes we kind of, because of our society is, the push is, like you need to just keep doing more. Like you need to climb the career ladder, you need to be constantly busy. If you're not exhausted at the end of the day, then it's not been a good day. But actually, really... That shouldn't be what we're aiming for. We should be aiming for what fulfills us, not what other people tell us fulfills us, but what actually makes us feel good in. Maybe that is climbing the career ladder, but maybe it's a pajama party and just, you know, having that. That freedom to explore what you actually want rather than trying to follow what other people tell you to want or a societal script we are fed. 

Jo 

Yeah, I think that is. sort of I saw a change in that attitude following lockdown where people were like, you know what? I actually know what's important in life now. I know what I missed and what I didn't, and I know what is a priority going forward and what isn't. And I don't think that's a bad thing at all, being able to prioritize. And there are things that maybe you think you're going to miss, but actually it's not that important to you when you get right down to it. So, yeah, I talk a lot about prioritizing in terms of If you have limited amounts of energy. you know you're not going to be able to necessarily keep a house independently. Look after yourself independently and work full time. Which of those things do you want to do? What's the priority? What brings you joy? What brings you satisfaction? What is the best use of your energy? So for me. I get a lot of satisfaction out of gardening. I get a lot of satisfaction out of like creative, like mending clothing, that kind of thing. And I love my job, but I don't want to do it full time. So what I do is work part time, but live thrifty. So if I'm gardening, I'll grow food. If I'm crafting, I'll make clothes. And that keeps costs down in other areas, which allows me to work less hours. Whereas if my career was my main focus, I was so driven to be an occupational therapist full-time, I would aim to be earning enough that I could have a cleaner and a gardener and I could buy clothing and I could have a laundry service because that means that I can focus my energy on my priority, which in that scenario is my career. So I think there's this modern kind of I blame capitalism. I blame capitalism for a lot of things, but there's this modern perception that you have to do all of it yourself. But it used to be that one person ran the home and one person brought the money in. 

Elizabeth 

Yeah. 

Jo 

And that was like a sustainable thing. Whereas now both people are working and you're still trying to do the home on your own as well. That's not, that's ridiculous. Like, I don't understand how we've normalized that. Um, so yeah, working out where your priorities lie. And then if your priority is not cleaning, get a cleaner. If your priority is not cooking, get a meal delivery service. Budget for a takeaway once a week. Um, if your priority is having very nice clothes, then prioritize some time to spend time on vintage or, you know, have a catch your wardrobe, but have a designer catch your wardrobe rather than loads of items of cheaper stuff, you know? So, um, yeah, it's, I think takes a long time to work all of that out. And there's this expectation that you'll move out at 18 and by 20 have your life altogether. I don't know anyone who's got their lives together. Everyone I know, 30s, 40s, people in their 50s are still constantly making adjustments to their priorities and their understanding and where they want their energy to go. And that's fine. There's nothing wrong with that. We don't have to just miraculously know how we want to live at 21. And I think once you realize that everyone around you is basically in the fake it till you make it thing, it takes the pressure off a little bit. So, yeah. 

Elizabeth 

Yeah, it's our first time doing this life for everyone. Everyone's first time on this earth. We're all doing this for the first time together. And I think that's so true. And when I realized that, because for so long, I would look at people and I think, oh, they have their life together. No, they didn't. And it is that kind of... It takes it off. You think, oh, actually, maybe this idea of having your life together, perhaps it doesn't like it's not a thing. Maybe nobody does. And maybe it's OK then that I don't. And I think that's quite powerful. And I do like I do love a bit of fake it till you make it. Definitely. That's me. I'm faking it until I make it and just hoping for the best. 

Jo 

Yeah. No, it's interesting. I had this discussion with a friend of mine quite a while ago now about the fact that both of us have fairly severe health problems, but were perceived as having our lives together in a way which we did not feel was an entirely accurate representation. And it basically came down to the fact that I realized when I looked through my Instagram, I was posting photos of me doing things, speaking at conferences, traveling, going off to university, doing all this stuff. There was no evidence online whatsoever or for two days in bed after every conference. Or the fact that I can only do those things because my mum drives me everywhere. My partner does most of the cooking. I barely even know how a washing machine works because I'm so infrequently called upon to do laundry. So the representation of me that goes online looks a lot more independent than I am, looks a lot more active than I am. And when I realized that that applied to me, I then started applying it to everyone else I looked at online. So how many of the people that I think have their lives together actually just got really lucky with their support systems? Or how many of them have got like half of the room that's currently off camera, an absolute state, and they've just focused on making the little box behind them look like an Instagram dream office? Probably most of us, do you know? Yeah. Yeah, it does. It takes the pressure off. It lets you be a little bit more relaxed about it. I think when you realize that fake it till you make it is basically what everyone else is doing too. 

Elizabeth 

Yeah, we're all just figuring this out together. No one knows what they're doing. I think that's a really good place to end because this is like, just like the last 40 minutes have just flown by. But yeah, I think. a reflection on that, wherever you are at the moment in your life and whatever is going on for you, if you feel like you're behind or you feel like you're not doing enough or that you should be doing more, that idea is just, there is no pathway that you should be following. It is your own path. And those people that you look up to and think, that's how I should be, probably don't have it together either. So you just do you, go on your own journey and hard as it is, try and find a path forged on what you want rather than what other people want for you. Yeah. Thank you so much for coming on, Jo. It's been lovely speaking to you. 

Jo 

Thank you so much for having me. I've really enjoyed it. It's been great. 

Elizabeth 

To learn more about Jo and her work, check out the links in the description. And as always, thank you for listening. 

Please note this transcript is automatically generated and many contain errors.