Intro – Sofie (Host):

What do EDS, POTS, and floral scents have in common? 

[Music]

Welcome to this month's episode of the Disabled Scientist Podcast. 

I'm your host, Sofie, a disabled scientist, and I'll be introducing you today to Dr. Kelsey Byers, an evolutionary chemical ecologist with Hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, ADHD, and multiple other disabling chronic illnesses. 

Let's get on with the show! 

Sofie (Host):

So my first question is, what are Hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome and ADHD? 

Dr Kelsey Byers (Guest):

That is a great question. So Hypermobile Ehlers-Danlos Syndrome is a, as the name kind of implies, a hypermobility disorder. 

Basically, it means your connective tissue is all loose and floppy when it should be nice and strong and tight to hold your body together. 

And that's not just the joints, it's your gut, it's your lungs, it's all sorts of other parts of your body, it's your blood vessels, et cetera. 

So hypermobile form is just one of several forms of Ehlers-Danlos, and it's sometimes considered the least severe because it doesn't tend to kill you, but it does tend to be quite disabling for a lot of people. 

Comes with joint pain, frequent joint dislocations in many people, including me, and just general sort of lack of coordination. 

Also, I have a lot of bruises all the time, both because I hit things accidentally and also because I bruise more easily because of Ehlers Danlos Syndrome. 

Sofie:

That makes sense. 

Kelsey:

Yeah. It's. I remember with my mom, it was like, why is Mum covered in bruises? 

Oh, right, it's the EDS. Yeah. So POTS often comes with EDS. So POTS is Postural Orthostatic Tachycardia Syndrome. 

As you said, it does not have to do with cooking, although it can make cooking tricky because you often stand at the stove and when I stand up for too long, I pass out. 

So POTS is basically break it down. Postural – standing;, orthostatic - you're still standing; tachycardia - your heart races; syndrome - a collection of symptoms and we don't quite know what's going on. 

And so essentially, your heart beats too fast when you stand up, and eventually it gets to the point where your body says, oops, I'm an opossum. 

Sofie:

[Laughs]

Kelsey:

Let me play dead on the floor. That is how my first neurologist described it, and I thought it was very apt. 

Sofie:

Yeah. 

Kelsey:

So basically, I use a wheelchair most of the time because I can't stand up for very long. 

So, so standing in queue at the pharmacy, the grocery store, the bus stop, not on for me. 

And so wheelchair really helps me be as independent as possible, which is great. 

And also on days when I'm dislocating my ankles, having a wheelchair is really nice to not have to put pressure on those bumpy, sad ankles. 

In terms of adhd, many of you might have already heard about this. 

It's a condition or disorder that basically results in difficulty with attention and executive function. 

So executive function, things like making to do lists, prioritizing tasks, getting the tasks done. 

So I am kind of rubbish at a lot of these things and it's really, really frustrating. 

Even things like, oh, it's time to file your self employed taxes. 

Good luck with that. 

Sofie:

Yep. Yes. My partner also has ADHD and is also self employed. This year he didn't do it on the last day. It wasn't on the very last day. So yes… 

Kelsey:

Victory. Celebrate those victories! 

Sofie:

Great. Okay, thanks for that explanation. What do they mean for you? 

Kelsey:

It's kind of complicated. I didn't consider myself disabled until I was in graduate school. 

I knew something was not right since well before that. 

I haven't had a day without pain since I was age 13 and I'm 39 now, so it's been a long time. 

And we eventually figured things out over time, but I still said, you know, I've got this disorder, but I don't really know what's going on. 

I developed POTS during graduate school as well, so I haven't had it my whole life. 

Unlike Ehlers Danlos. And the ADHD was actually diagnosed when I was in my late 30s. 

But we knew something was different ever since I was a small child. 

I think the word disability to me when I was younger was a really negative word as it is for a lot of people. 

They assume it means inability or can't or something is wrong with you. 

And it wasn't until I met fellow students in my PhD who were also disabled and were part of disability advocacy that I went, oh, this word actually describes me. 

And that's actually a good thing. Yeah, like having an identity, home to come home to and having people to talk to who were not. 

I'm trying to figure out how to say this. Not impaired by their disabilities, but were not brought down by their disabilities. 

Was really important to me to find people who went, this is my body and I'm living in it and I'm doing what I want to do with my life. 

Sofie:

Yeah, that's important, definitely. 

Kelsey:

And I think the one thing that was Challenging about that though, was that all of these students were in disability studies programs. 

Really, I was the only scientist in the group. 

Sofie:

Interesting. 

Kelsey:

And that was really hard. I mean, I went to conferences. This was before I used a wheelchair. And there were one or two other visibly disabled people in these 18 to 2000, 1800 to 2000 person conferences. 

And that was just really hard because I didn't see people like me. 

And how can you know that you can succeed if you don't see people like you? 

Sofie:

And that's a big reason why I want to do this podcast. 

So, yeah, I want more people to know that there are people like you in STEM, you know. 

Kelsey:

Absolutely. I was at a conference recently and met a younger student who is still in her undergraduate, who also has Ehlers Danlos and POTS and also uses a wheelchair. 

And I was like, it felt like putting myself in her shoes and going, this is what I would have wanted to see when I was at that age and at that stage of my education. 

So part of me also wants to be there for other people to show them that this is actually possible. 

You can succeed as a scientist. You can be a productive, happy researcher and also be disabled. 

And these two things don't conflict. 

Sofie:

No. 

Kelsey:

Yeah. 

Sofie:

Yep. Yep. 

Do you talk to your colleagues about being disabled? 

Kelsey:

Yes, for most of my disabilities, some of them I'm a little more private about. 

But even before I started being visibly disabled, I would talk to my colleagues a little bit. 

It depended on who I trusted. And nowadays when I'm doing more advocacy work and also when I'm very visibly disabled and fit the picture that many people stereotype of a disabled person as that person in a wheelchair. 

I do talk to my colleagues about it, anywhere from, hey, I noticed that you've left this piece of lab equipment in the middle of the lab and I can't get past it. 

Would you mind moving it? Because that will benefit everyone too. Hey, I noticed you're having a bit of a rough time and I know you've got some chronic health stuff. 

Is there anything you want to talk about? 

Sofie:

Yeah. 

Kelsey:

So when I was in my PhD and started, I knew I had some neurodiversity stuff going on, neurodivergence stuff going on. 

And I knew I had problems with my hands, but I was really nervous to tell my PhD advisor about it because I thought he would say, oh, well, I don't want you in my lab. 

Sofie:

Yeah. 

Kelsey:

And so I actually waited to tell him until after I'd done a three month placement with him at the start of my PhD, what we call a rotation in the US and then I said, okay, I think he likes me and he's agreed to accept me into his lab. 

And so maybe it's time we have this big sit down conversation. 

Yeah, nowadays I have that conversation before I even start somewhere. 

I have a whole document that I send to the administrative offices and my line manager and so on. 

That's like, it's not an occupational health assessment. 

It's just me saying, here's me, here's my disabilities, here's what I need from you. 

Sofie:

Yeah, yeah. 

Kelsey:

I do talk to colleagues sometimes too. I co-founded an accessibility advocates group at my current institution to basically create a listening space and also a bit of an advocacy space for people to ask questions, get advice, find out they're not the only person at our institution living with whatever they're living with. 

Sofie:

What does that look like? How do people access that? 

Kelsey:

So we have meetups, usually on teams. And that's just because online is often easier for a lot of folks to access. 

If they're working from home or working flexibly or need cash options, et cetera, we have those. 

They're scheduled around specific topics, but oftentimes we'll find that the interests of the group will guide what the discussion is on that day. 

So, for example, we had one that was around invisible illnesses, which is a lot of disabilities are not visible. 

And it turned out that a lot of folks in that call actually had hearing difficulty. 

And so it turned from a discussion of general invisible illnesses to what can we do to make hearing access better on site? 

Sofie:

Yeah. 

How effectively do things seem to translate out of discussions within the group into things that are implemented on site? 

Kelsey:

That's an interesting problem. So translation of discussions into outcomes has been really tricky and I think is a common problem for disability advocacy work. 

It often requires individuals who have access needs to push those access needs forward. 

So, for example, we automated the doors that lead to beyond reception at my institution that lead to some of the other buildings, but those doors weren't automated because it was thought to be a good idea. 

They were automated because I complained and said, I'm having trouble getting to hr, for example. 

And so some of it is just supporting people who don't realize they have the right to have accommodations made for them or made with them. 

And some of it is reminding people about the existence of programs like Access to Work, which is a UK program that supports disabled folks who are in work, unfortunately does not support students, but. 

And some of it is just helping people get up the courage to Ask their line managers for accommodations that probably are quite simple and not expensive, but that people may be nervous to ask about. 

Sofie:

Yeah, it's common to be anxious about asking for accommodations. 

A lot of people feel like they are. They are adding, you know, creating an extra burden, whereas in reality, you are… You're helping other people get the best work out of you. 

Kelsey:

Exactly. And it feels like sometimes you are putting a burden on someone else, but in fact, the burden has been put by the system on you. 

And so actually, what you're doing is you're removing that burden so that you can help everyone else in your team to be as productive as a team as possible. 

So it's really about removing those barriers rather than about, oh, so and so gets special treatment. 

It's about equity rather than equality. 

Sofie:

Yeah, yeah. 

Could you outline the tasks that you do as an evolutionary chemical ecologist? 

Kelsey:

Absolutely. So I'm often asked to give a day in my life sort of tale, and I have a lot of trouble with that because every day is really, really different. 

I mentioned when we were chatting earlier that I've got a grant deadline coming up and I have a paper set of paper revisions I need to return. 

So that's one big chunk of what I do, is I basically look for money to fund the research I'm doing. 

And I write up about the research, both for public outreach as well as in scientific journals, and go to conferences, give conference talks, mentor students. 

I also teach, but not nearly as much as someone at an actual higher education institution. 

I also do field work and do lab work and sometimes can be found in the glass house tending to plants. 

And by tending to them, I mostly mean giving them names, like, very creative names, like A and B and C, and sometimes collecting floral scent, because that's what my lab primarily studies is floral scent and pollination. 

Sometimes I can be found watching bumblebees do various bumblebee things. 

Sofie:

That's nice. 

Kelsey:

Which is very cute. 

Sofie:

I went to Mousehold Heath yesterday and I saw a little bumblebee with, like, a red bum. 

Kelsey:

Oh, excellent. 

Sofie:

Buzzed around and, like, crawled into its little hole in the ground. 

Kelsey:

Yes. Oh, it must have been a queen with a nest. Was she big? 

Sofie:

She was, uhh, sizable, yes. 

Kelsey:

Then it's a queen who's just. She's probably just started her first generation of workers, and so she still needs to go out and forage to feed the new workers. 

Sofie:

Interesting. 

Kelsey:

So she's got her nest hole already, which is really good sign. 

So she'll probably have a lovely nest this summer.

Sofie: 

Ah, that's very Good. 

Kelsey:

Yes. 

Sofie:

Now, before I ask you to tell me about flowers and pollinators, do you feel like there's anything that I've missed that you'd like to talk about? 

Kelsey:

I don't think so. I think we've addressed most of it. I guess one of the things that I think is difficult as a scientist who's disabled is this, especially in academia, is this sort of concept of what is work time and what is not work time. 

So, for example, if one is an academic scientist, an early career researcher, for example, one is often told that one needs to network with people and you need to do that at the pub after the conference day is over, or you need to do that by going on conference outings. 

And these things are seen as optional, but they really aren't. 

But I can't go to a pub after a conference day. I simply can't. I used to try and I've decided at this point that I just can't because I would fall over and I couldn't hear. 

I do have some hearing issues. I wouldn't be able to hear anyone anyway. And so these things are very important for one's career, but they're also not usually accommodated because they're not seen as essential criteria of the job. 

Sofie:

Yeah. 

Kelsey:

And I think that really needs to change. I think we need more attention to what are the actual parameters of one's job and not just what are the written rules of what one should be doing. 

So these unwritten rules around academia, unwritten jobs that one needs to do, unwritten tasks, those really need to be discussed openly. 

And I think that's something that I'm finding is more and more of an issue. 

Sofie:

Something that this brings up for me is this idea of needing rest. 

Days after conferences or conference will almost certainly be deemed a work event. 

You are working at the conference, correct? 

Kelsey:

Yes. 

Sofie:

But in order to attend, it would be beneficial for me to have an enforced rest day afterwards. 

But that probably wouldn't be considered just as part of what is needed to be able to attend a conference. I don't know. 

Kelsey:

I actually have asked this exact question to our human resources team and to my line manager because this came up as a recommendation from Occupational Health. 

They said, Occupational Health said to me, if you go to a conference, you need to take a rest day or two afterwards, especially if it's an international travel type setup. 

And so I actually asked, I was having a meeting with my line manager and HR and Health and Safety to discuss the occupational health report. 

And they said, well, of course that makes perfect Sense. 

And I said, so do I count that as a sick day? Is that a leave day? 

Sofie:

Yes. 

Kelsey:

Is that a work day? And they said, well of course it's a work day because like everyone does it. 

It's just that no one talks about it and there's no official policy about it and therefore you don't know that you have permission to do it. 

Sofie:

Interesting, because I would assume that I don't have permission to do that. 

Kelsey:

Yeah, exactly. 

Sofie:

Anyway, please tell me about bees! 

Kelsey:

I would love to tell you about bees. So you mentioned the bumblebee that you saw, the red tailed bumblebee, which is probably Bombus lapidarius. 

Sofie:

Okay. 

Kelsey:

So Bombus is the genus name that means bumblebee and Lapidarius refers to someone who might be a lapidary or a jeweler. 

Sofie:

Ah, okay. 

Sofie:

And so I think that's probably named because she's got that beautiful black body with a red tip at the abdomen, kind of like a fire on a ring, like a ruby. 

They are lovely. They're actually one of the major groups of bees that we've seen around Norfolk pollinating oilseed. 

Sofie:

Oh really?

Kelsey:

 Yeah. So we've done surveys for a few years on the farm that the Johnnist centre has and we walk transect. 

So this is a case where I'm walking and we're walking up and down the rows and I made up a sheet where we record what kind of bees and wasps and flies and other such things that we're seeing around. 

And we see a lot of these red tailed bees. They are fabulous. One of the best things to me about bees is that male bees can't sting. 

Sofie:

Yes. 

Kelsey:

So only females can sting because the sting is a modified egg laying device basically. 

And if you can identify which bee is a male by eye, you can pet them. 

Sofie:

Excellent!

So I have taught my housemate in Seattle as well as my partner how to identify male bumblebees and they pet. 

Sofie:

That's fun! 

Kelsey:

And the male bumblebees stick their little legs in the air as if to say, don't eat me, I'm not a food. 

Sofie:

[Laughs]

Kelsey:

And they're so soft and furry. 

Sofie:

Yeah, excellent! 

Kelsey:

There's also these wonderful bees called orchid bees that live in the tropics that are speaking of lapidaries, they are beautifully emerald green and purple and blue and all sorts of shiny colors. 

And some of them also look a lot like bumblebees. And the males are scent collectors. So the flowers they visit don't reward them with nectar and they don't reward them with pollen, which the Males wouldn't use anyway. 

They reward them with scent, which the males scrape off using special brushes on their forelegs. 

Sofie:

Excellent. 

Kelsey:

And then they carefully pack the scent into pouches on their hind legs, which look very odd. 

If you're used to looking at bees, you go, what is that? 

Yeah. And they mix their own mixes specific to each individual male based on the flowers they visit. 

Sofie:

Wow. 

Kelsey:

So it's like they're distilling their own cologne, Essentially. 

Yes. And then they display that to potential females and go, aren't I wonderful? 

Look at my beautiful smell. My beautiful cologne. Excellent. And we know that bees can smell for more than a kilometre away because someone was off the coast, I think, of either Ecuador or Costa Rica, I forget which. 

Unfortunately, they had some of these baits they were using to attract orchid bees in the jungle. 

And some orchid bees appeared a kilometer offshore to the baits. 

Sofie:

Wow. 

Kelsey:

Yes. Bees have amazing senses of smell. 

Sofie:

Yes. And that's a big part of your research is looking at how pollinators engage with smell. 

Kelsey:

So one thing we do, for example, which sounds a bit absurd science y, and it's not the kindest thing one could do to a bee, we do cut their antennae off. 

Sofie:

Oh, okay. 

Kelsey:

And we mount the antenna across a set of electrodes, kind of like if you've ever had an EEG or an ECG, except without the sticky pads. 

We mount the antenna across a set of electrodes and we blow scent across the antenna and we measure the change in the voltage of the antenna. 

Sofie:

Oh!

Kelsey:

And that tells us whether the antenna is able to detect certain scents. 

Okay, so it's very absurd. Yes. And no one quite knows how it works, actually. But it does work. Yeah. I do donate money to an invertebrate conservation charity every year to atone for my mutilation of bees. 

Sofie:

Yeah.

Kelsey:

And in case anyone is curious, we do euthanize the bees afterwards in a freezer because they won't be able to find food without their antennae. 

Sofie:

That's a little bit sad. 

Kelsey:

It is a little sad. But the idea is that some of the things we learn can be used to conserve other species of bees, for example. 

So we know that bees often have specialized relationships with certain types of flowers, like willows, for example. 

Sofie:

Oh, okay. 

Kelsey:

Yeah. Often willows are one of the first thing that flowers in the spring. 

Sofie:

Yeah. 

Kelsey:

And so certain bee species are quite dependent on willows. 

So if we can understand how those bees use willows and how they sense willow and decide which willow species to go for, we can possibly work on conserving those bees. 

And their willows. 

Sofie:

Oh, interesting. Okay. So I was just wondering, you mentioned earlier about oilseed rape. 

So, how could your work lead to improvements in oilseed rape? 

Kelsey:

That's a great question. So I have a collaboration with another John Innes researcher, another group leader, Steve Penfield, and also with another group leader, Rachel Wells. 

And we're looking at factors that would attract bees to oilseed as well as factors that would attract pests to oilseed and mustard. 

And so the idea is that there's been a lot of research done on visual factors that attract these things, but not a lot of research done on scent factors. 

And so oilseed in particular, we know for pollination, it can set its own seeds, but the yield is higher if it's pollinated by insects. 

And so if we can breed oilseed and use existing diversity in oilseed to breed it to have scents that are attractive to pollinators, we can increase yield without needing to worry about chemical inputs and things like that. 

Sofie:

Hmm, that's interesting. 

Kelsey:

Yeah, yeah. It's been a lot of fun. We've had a project that was internally funded to look at the diversity of compounds that are present in oilseed, and it was quite surprising. 

The results. 

Sofie:

What does oilseed smell like? 

Kelsey:

Ooh, it's a little musty, a little sweet, a little powdery. 

Kind of like baby powder sometimes, actually. Yeah. 

Sofie:

There's a lot of oilseed rape around Norfolk. 

Kelsey:

There is. Those fields of gold are absolutely beautiful. I actually have one printed on my coffee cup that I have here. 

I love to see the fields of gold and I love to see the bees around. 

And they're actually a really great resource for pollinators, especially the winter oilseed crops, because they bloom in the very early spring when those bumblebee queens are looking for their first resources to start building their nest. 

And they're this. Basically this huge pool of resources that the bees can feed off of. 

Yeah, yeah. So they're really beneficial. The problem with oilseed is that the yield is very variable in the United Kingdom. 

Sofie:

Okay. 

Kelsey:

And so it can be difficult to persuade farmers that they want to plant oilseed because they don't know from year to year how much they're going to make on a given field. 

Sofie:

I see! So what are you hoping to do next? 

Kelsey:

That is a good question. I'd really actually like to take some further steps on the oilseed project. 

Sofie:

Yeah. 

Kelsey:

So we're trying to figure out possibly some genetics that might be causing these different smells that the oilseed plants produce. 

Sofie:

Yeah. 

Kelsey:

So because we were able to survey quite a large number of different varieties of oilseed. 

We're trying to use those tools to leverage genetic resources of those oilseeds to figure out how they smell. 

I've got a PhD student who's working on a project on climate change and orchids in the Alps. 

Sofie:

Oh, okay. 

Kelsey:

I've been working on these orchids for more than a decade now, so it's really great to see that project continuing. 

Also, really keen to do a survey of sense of smell in Norfolk Bees. 

Sofie:

Norfolk Bees!

Kelsey:

So we have actually one of the highest diversities of bees in the United Kingdom here in Norfolk. 

And so we're interested in combining genetic resources through, for example, the Darwin Tree of Life with resources we generate ourselves and exposing a wide variety of Norfolk bee species to the same set of scent compounds and seeing how their responses differ and whether those responses are linked to are they solitary bees or social bees, are they diet specialists or diet generalists, Things like that. 

Sofie:

Excellent. Thank you. Where can our audience find out more about what you're doing? 

Kelsey:

Absolutely. I am on Bluesky. My username is plantpollinator. As might be guessable, I also have a website, plantpollinator.org that is in slight need of an update, but if users are interested in finding me, they can find me on those two places pretty easily or search my name. 

Sofie:

Great. Thank you so much for coming along. 

Kelsey:

Thanks. It's been really lovely. 

Sofie:

Excellent. 

Outro – Sofie:

Right, we're at the end of the episode. It was a lot of fun to do my first in person recording with Dr. Kelsey Byers and I'd like to thank them again for coming to meet with me. 

If you'd like to see more of their work, you can follow them on bluesky, plantpollinator.bsky.social, or visit their website, plantpollinator.org.

You can find the disabled scientists podcast on bluesky @disabledscientists.com.

Thanks for listening. 

Bye!

[Music]