Intro - Sofie (Host):

What do a functional movement disorder and lab access guidelines have in common? 

[Music]

Welcome to the very first episode of the Disabled Scientist Podcast. 

I'm your host, Sofie, a disabled PhD student, and I'll be introducing you today to Dr. Katherine Deane, an associate professor in healthcare research with a functional movement disorder. 

Let's get on with the show!

Sofie (Host):

Hello, Katherine. 

Dr Katherine Deane (Guest):

Hello, Sofie! 

Sofie:

What is functional movement disorder? 

Katherine:

A functional movement disorder is something that most people haven't heard of. 

It's a relatively new diagnosis being recognised by medical science. 

We used to be mad and making it up, 

Sofie:

Mmm

Katherine:

but what it is is that unlike other neurological diseases, like Parkinson's or multiple sclerosis, where there are structural things going wrong, parts of the brain that are deteriorating or the nerve insulation is deteriorating, what you have in functional movement disorders or functional neurological disorders is that the brain signals weirdly. 

So in my case, it means that my movement signals are really rather erratic. 

And that means that I can shake, that I struggle to keep walking, I get slower and slower and slower and things like that. 

It also causes me a lot of fatigue and brain fog that goes with that. 

Other people end up with functional seizures, can have sensory loss, can have other movement problems, et cetera. 

So it's a very wide ranging diagnosis at the moment, and it's really only been formally recognized by the medical profession for less than 10 years. 

But it's supposed to be about as frequent as multiple sclerosis, so there's about 120,000 people with it in the UK. 

Sofie:

Okay, thank you. Umm, and what does having functional movement disorder mean for you? 

Katherine:

Well, it means for me that I'm an electric wheelchair user because, like I say, my walking is not so great. 

And it also means that I have to manage my fatigue levels very fiercely. 

So I'm doing this interview with you today from my bed. 

My bed is my usual place of work nowadays and that allows me to manage what limited energy I have. 

I can get out and about, but it can have quite significant post-exertional malaise attached to it. 

So, it's not just you're a bit tired the next day; no, I did a lot in March and it means that the whole of April has been very, very tired. 

So, yeah, it's something you have to manage and struggle with. 

And I do get with the fatigue, I do get mild cognitive impairment, brain fog. 

And that means, particularly in a job such as mine, where there's a lot of detail, a lot of complexity, a lot of linking things together, that can be a bit challenging. 

And yes, there are days where I have to let my colleagues know that no, I should not be in charge of heavy machinery or this particular research project. 

Can they please double check what I'm saying and doing? 

[Laughs]

Sofie:

[Laughs] Mmhmm, mhmm, that makes sense. A question that many people might have is what's the difference between fatigue and tiredness? 

Katherine:

Fatigue is sleeping 18 hours in a day and waking up absolutely exhausted. 

Fatigue is having a shower and that wiping you out for the rest of the day. 

Fatigue is literally not being able to put words together in a sentence. 

It is much worse than just being a bit tired and then having a lie in the next day to catch up. 

This doesn't let you catch up. 

Sofie:

Yeah.

Katherine:

You can go out and do things, but there's a cost and it's not uncommon that in my diary, I have PCL labeled in my diary and that's called a Planned Crash Landing.

[Laughs] 

Sofie:

Aah!

Katherine:

So that I actually plan in that I know I'm going to be bad after I've gone and done things. 

So I try and book in as much rest as I can afterwards and not overload the system. 

It doesn't always work because the post-exertional malaise can happen the next day, the next week, the next fortnight [laughs] and it can last for a day, a week, a fortnight, a month. [Laughs]

So yes, it's, it's a bit challenging, it's not very predictable. 

But you know, by pacing activities and not doing too many high load activities in one day and all the rest of it you can usually manage to do… At least I can manage to do a fair amount. 

So there are definitely people with far worse levels of fatigue than I have, but that's my level of fatigue. 

Sofie:

I think this idea of predictability is something that will be very relatable -

Katherine:

Yeah

Sofie:

- to a lot of disabled people. 

Do you talk to your colleagues about being disabled? 

Katherine:

Yeah, I'm very much open, proud and out about my disability. 

I'm very explicit about it. I'm an advocate for more improved disability access. 

I will talk and support my disabled colleagues, particularly if they're union members. 

And I do regularly challenge both my colleagues, my school, my faculty, my university, to improve accessibility in a really wide variety of ways. 

I have been doing work as the Access ambassador to the university for about 10 years. 

It's a title I took on for myself and they just haven't dared take off. 

Sofie:

[Laughs]

Katherine:

And that work has led to the University of East Anglia being one of the most accessible campuses probably in the world. 

It's very hard to judge because there is no, currently no assessment scale for that, working on it. 

Sofie:

Mmm

Katherine

I'm getting there! 

But I genuinely believe that we are really quite accessible, particularly when I roll around other people's campuses -

Sofie:

Yeah

Katherine:

and I just go, oh, why has that got a step there? 

Oh why is that signage any good? Oh why is this door so heavy? Oh why is this toilet so small? Et cetera. And whilst we do still have some of those issues at UEA, we have far, far fewer than we used to and most of the most embarrassing barriers are now removed and dealt with. So.

Sofie:

Yes, because institutions should see lack of accessibility as embarrassing. 

Katherine:

Yeah. Oh yeah, No, I absolutely. I land the embarrassment exactly where it deserves to be. 

It's on the institution. It's had 30 years since the legal requirement of the Equalities Act 1995 [Disability Discrimination Act 1995], which was then rolled into the Equalities Act 2010; virtually unchanged certainly in terms of what institutions ought to be doing. 

And they've had 30 years. And most universities have paid the very minimum lip service to improving accessibility. 

So I have no problem whatsoever in pointing this out and saying, so you owe me 30 years of budget. 

[Laughs]

Sofie:

[Laughs] Yeah!

Katherine 

When they complain that it's going to be too expensive, et cetera. 

Sofie:

Yeah.

Katherine:

And most of it isn't too expensive.

Sofie:

No.

And it makes such a difference to the campus, it makes it so much more usable for everybody. 

Sofie:

So your main role is associate professor in healthcare research. 

Katherine:

Yes. So I almost have two parts to my job. The associate professor in healthcare research is what I would call the conventional healthcare researcher. 

I do research on the management of long term conditions and disabilities. 

I co-create interventions with the patients in order to help them stick to the diet, take the pills, do the exercise and basically manage the anxiety and depression gremlins that go so often with these long-term conditions and to optimize their wellbeing and quality of life. 

So that's the sort of the official bit that the university likes to recognize. 

The less official bit is that access ambassador role. 

And that I have managed to get the university to allocate time to it. 

I get a day a week to do that role which has been incredibly important in allowing me to go and do really creative things. 

So, I have worked with Greater Anglia Rail to design their railway carriages. 

I've worked with the Castle and that's gonna now have a highly accessible Changing Places toilet with a bench and a hoist and it's going to have a lift that gets all the way up to the roof as a wheelchair user, which is going to be brilliant. 

I've worked with loads of theaters, Winchester Planetarium and Science Center, a roadworks, ramps manufacturer, the Wellcome Trust; you name It I've probably worked with them and that has given me a real breadth of experience as to the practical application of how do we make this stuff accessible, how does it work in practice? 

And all of that has then started to lead into, I suppose, what the university would regard as legitimate work, ie. funded research gain, because all the funders have suddenly woken up to the fact that EDI is absolutely critical to quality research and that the culture that we currently have research in is pretty toxic and very poor on EDI. 

And so we are now getting research money to genuinely research how to create interventions - so training and support and mentorship and what sort of flexible monies that we need to genuinely make research accessible, both to the research teams and to the research populations that are going to be involved in the research. 

And that's incredibly exciting. And to say that the money is coming in is an understatement. 

In the last year, I've managed to bring in nine and a half million pounds worth of grant income. 

That has an EDI tag to it. 

Sofie:

That's a lot. 

Katherine

That is a huge amount. It's about 8% of the university's grant income for the last year. 

Sofie:

8%? 

Katherine:

Yes. 

Sofie:

That's amazing. 

So taking us onto the Access All Areas Lab access guidelines, which is the work that first brought you to my attention. How did they come about? 

Katherine:

So this was a serendipitous project. This came about because of my access ambassador role. 

The Catapult Cell and Gene Therapy guys came and talked to me and said, we're refurbishing some labs in Edinburgh University and we're wanting to make some of them really highly accessible because we think that's an impress- you know, important thing to do. 

We are set up to be the interface between academia and industry. 

We think having a gold standard accessible lab as a exemplar lab would be really brilliant. 

Oh, by the way, it's a clean room, pharmaceutical – 

Sofie:

Oh!

Katherine:

grade lab, so no challenge there whatsoever! [Laughs] 

And so I gave them a few ideas and they went away, put out a call saying, we need contractors to build this lab for us and got zero responses because all the contractors came back to them and said, we don't have enough knowledge about accessibility. 

So Catapult then came back to me and said, Katherine, help! Would you advise our contractors? 

And I said, yep, absolutely, let's do that. And they said, oh, would you like to do a little extra whilst you're doing this? 

I said, could I do a survey? And they went, yeah, do a survey. I said, create some guidelines? They went, oh, that sounds like a good idea. So, we did a survey, got very quick and dirty because this was money down the back of the sofa, we had to spend it by the end of the financial year. 

So we literally had four months to do this project in; ridiculously short amounts of time. 

So we did a quick and dirty survey of- I got 152 people to respond and tell us about lab accessibility. 

And we got loads of data. And basically, we all know labs are inaccessible. 

Well, yeah, they're even worse than that. [Laughts] You know, it's. And it's not even lab access stuff, it's even basic ergonomics. 

It's this brain on a stick model of scientific researchers. 

So over half of the labs don't have a chair in them. 

Sofie:

Oh. 

Katherine

[Laughs] 

Less than 10% of the labs have any height adjustable benches. 

Less than 5% of them have height adjustable hoods or fume hoods. 

Less than 10% of them have adjustable lighting. 

You know, less than 10% of them have powered doors into the labs. 

Less than 10% of them have, um, hearing loops in the labs. 

It's abysmal. But even more scary, 80% of people who responded who were disabled such that they needed a personal emergency evacuation plan in the event of fire or other emergency did not have one. 

8 out of 10 did not have a PEEP. 

Sofie:

Oh, no!

Katherine:

Which is terrifying. We didn't ask why and we should have done. But, my interpretation of that is I fought really hard to have the accommodations I need to get into the lab to do the work I'm doing, I daren't stick my head above the parapet one last time – 

Sofie:

Yeah…

Katherine

 To ask, how are you getting me out in the event of fire? 

Because that's a rare event. So we'll ignore that. 

Sofie:

Yeah.

Katherine:

And of course the employers know these people are disabled. 

There isn’t- These- This is not invisible disabilities. This is significant visual, hearing or mobility impairment. 

These are not the level of impairment that you cannot see. 

This is absolutely. Everybody knows this. And eight out of 10 of them did not have a plan to get out of the building. 

The employers are happy to let them burn. 

Sofie:

Yeah. 

Katherine:

It's quite terrifying. And this is the problem. This is the end consequence of bias. 

Sofie:

Yeah. 

Katherine:

This is the end consequence of ableism. If we are second class citizens, then we are worth less and therefore we are cared for less. 

And this bias is clearly demonstrated by that figure of 80% not having a PEEP.

Sofie:

Mhm.

Katherine: 

So anyway, once we got the results of the surveys, we did ask for solutions as well. 

And then I went out and did a huge trawl through the Google-sphere and brought together loads and loads of guidance on how do you build structures, how do you design equipment, how do you adapt protocols, how do you disseminate the results of the work that's done in the lab? 

So that's web pages, conferences, meetings, consultations, and then, radically, there's people in that lab! 

So all the HR processes, all your working practices, and we gave advice on all of that. 

Mostly it's poached from other people's guidelines and just brought together in a pan-disability social model informed, very positive, very aspirational model of, yeah, everybody should be able to get into these labs. 

Here's some really practical ideas, solutions and principles. 

And by the way, this is legally required. 

Sofie:

Yeah.

Katherine:

And so we've created those guidelines and I'm really pleased to say that they've been used quite a lot of times already, and they are informing learned societies, on their guidance that they're starting to give out. 

The funders are starting to wake up to the fact that, yeah, when they give out funding to research projects, the research projects ought to be done in accessible environments, because otherwise they're funding bias. 

And so we are starting to see a shift. We're starting to see a shift. It's starting to happen. 

Sofie:

That's good.

Katherine:

[Laughs]

Sofie:

[Sigh] It's one of those things where it's, like, great that stuff's happening. 

Why is it only happening now? Argh!

Katherine:

Yeah. 

Sofie:

Yeah.

What are you working on next with the access guidelines? 

Katherine:

So the next thing we're doing is we're going to create access assessments. 

Sofie:

Mhm.

Katherine:

So we're going to assess how accessible is your lab and we're going to create an assessment. 

And we've got 17 partners on that project, which is amazing, including funders and learned societies. 

And there is a real consensus that we just want one assessment. 

Sofie:

Yeah. 

Katherine:

No matter what your lab does, no matter where it is, no matter what it's doing, that accessibility is so fundamental that we should be able to assess the accessibility of it, irrespective of what it is exactly you're doing. 

And if we have one assessment alongside relevant guidelines to support its implementation, et cetera, then everybody can be assessed. 

So, I can stop saying, I've got one of the most accessible campuses in the world and actually be able to give you numbers for that and prove it, so it stops being hyperbole and starts being numerically demonstrable. 

But it also allows the funders to say, eventually you're going to have to hit a minimum standard before we will fund you. 

You're going to have to publish your accessibility assessment before we will fund you. 

You're going to have to have this on a public facing site so that people that are visiting your research lab can know whether or not they can get in and get around and stuff. 

Remember that scientists are increasingly using facilities in other institutions and going and visiting them and using the big whizzy machine that does X and they're there for a fortnight and then they dive out and go and do something else. 

That's brilliant and it's a really effective and a really efficient use of money and time and space and all the rest of it, but it does mean that those shared resources have to be hugely accessible or you will increase the bias again. 

You will exclude researchers with disabilities from using those facilities and often those are the high prestige facilities and you will reduce that voice again. 

So I think that's really exciting. 

I'm also working on how to support making clinical trials more accessible for disabled participants. 

I'm working on a project that's looking at all of the aspects of EDI and how we support that and promote it in the context of research culture. 

I'm supporting a big public health project and I'm the inclusion champion there. 

So this is bog standard public health research, but you've got me jumping up and down and going, have we translated things? Have we talked to the learning disability groups? Have we worked out how this is going to work for people that don't have much money or don't have much access or don't have.. you know, so that's fabulous. 

And it is, like I say, it's an incredibly exciting time and we are starting to get together the data and starting to create repositories. 

I'm also working with an EPSRC funded EDI hub which is run by Leeds and it's going to be a centralized repository of curated resources around EDI. 

Obviously mostly aimed at engineering, maths, and physical sciences. 

But you know what, like I say, it’s core principles, it's the same stuff, it can be applied everywhere. 

So yeah, it's good fun. It's really interesting and really exciting times at the moment. 

Sofie:

Absolutely. 

Just to clarify, so the lab guidelines that you've developed, they’re for wet labs, dry labs…

Katherine:

Yep.

Sofie:

Workshops…

Katherine:

Yep.

Sofie:

Anywhere people are doing science, basically…

Katherine:

Yep.

Sofie:

Yep.

Katherine:

And it's a living document. 

So part of what we will do, as we do the development of the assessment, is that we will revise the guidelines; add in any new data, that's in there, around. 

So there's been a couple of new publications about how to make structural environments- so the buildings accessible for neurodiverse people, which is brilliant because I do recognise that that wasn't the strongest part of my guidelines. So we will expand that section, but also that we will make sure that it really lines up with the assessment… 

So the assessment and the guidelines really line up together. So you can really see if you get a “we didn't do well on this”: how do we then solve it? Well, you look at the guidelines and we'll have a number of possible solutions for you there. 

Sofie:

That's really important. 

Katherine:

Yeah. 

Sofie:

I encourage our entire audience to go and have a look at these guidelines. 

I've read parts of some of them. Erm, they're very good! 

Katherine:

They're very detailed! And as the way with guidelines, you only dip into them when you need them! 

And that's totally fine. I really don't expect people to read them in- You know, [Laughs] they're not light reading. But if you are refurbishing a lab, buying a new piece of equipment, thinking about a new protocol, teaching practice, anything, have a look at those. 

And if you're organizing a conference, it does have guidance on how you organize an accessible conference and things like that. 

So, yeah, you're very welcome to look at those. 

Sofie:

Thank you so much. 

On that important note, I think we've come to the end of our interview. 

Katherine:

No worries. 

Sofie:

Thank you for joining me. 

Katherine:

Thank you. 

Outro – Sofie:

I hope that was as interesting for you listeners as it was for me. 

I'd like to thank Dr. Katherine Deane once again for coming to speak with me today, as well as for the work that she has been doing more widely to improve access for disabled people. 

The lab access guidelines discussed in the show can be found at accessingbrilliance dot org.

The Disabled Scientists Podcast is on Bluesky at disabledscientists dot com and I can also be contacted by emailing contact at disabledscientists dot com.

Thanks for listening. 

Bye! 

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