a checklist for researchers with disabilities

Adam Levy: 00:09

Hello, I’m Adam Levy and this is Working Scientist, a Nature Careers podcast. Today, moving labs with a physical disability.

In this series we’ve taken a look at all different aspects of moving labs, whether that’s choosing one with the perfect PI, to shifting disciplines at the same time as shifting lab.

If there’s one thing tha’ts been clear across all episodes, though, it is the sheer number of factors that each and every scientist has to consider when weighing up where their next career move will take them.

But the reality is that some scientists have to take account of more variables than others. For scientists with disabilities, it can be a challenge to find somewhere that is welcoming, supportive, and, crucially, safe.

In this episode, we’re speaking with three disabled scientists about their experiences, what’s worked for them, and when they’ve been held back by the institutions they’ve moved through.

Evolutionary anthropologist Siobhán Mattison works with populations in southwest China, as well as the South Pacific island nation Vanuatu.

Siobhán is currently based at the University of New Mexico in Albuquerque in the United States. We started out by discussing the role disability has played in her academic career.

Siobhán Mattison: 01:44

For me, it’s a really dynamic relationship where, for example, when I was sick in Auckland, I wasn’t in that world at that time. I just thought I got sort of sick and needed to figure out how to get better, which I was able to do, I was really lucky.

You know, more recently, I’ve had this chronic disease that has evolved over the course of the last six years that is autoimmune in nature. And it’s a rare disease. It’s called myasthenia gravis, which affects my neuromuscular junction, and the way that my nerves talk to my muscles, basically.

And over the course of the last three years it has really affected my functionality where, you know, there were points where it has been really difficult for me to walk past my driveway. My breathing is sometimes affected. It can be hard for me to type on days, and things like that.

And once you start losing your functionality as an academic. You know, I think academia is a discipline like many others that really relies on being able-bodied in this kind of insidious way that you don’t know until you’re not able bodied anymore.

I gradually started turning my attention to studies of disability and thinking about disability and became, you know, sort of slowly identified with disability as I, I was increasingly affected by it, really.

And I think, you know, I’ve been really lucky in some ways that all of this happened during the pandemic, because I’ve been able to maintain my livelihood, working largely by, you know, almost exclusively actually through telework, where I can get infusions, and do the work that I need to do at the same time.

So I….you know, it’s been a kind of a silver lining in an overall scenario that’s not been very, you know, positive for most folks.

Adam Levy 03:38

When it comes to moving lab, how do you think disability does, or perhaps doesn’t get included in the conversation.

Siobhán Mattison: 03:46

Gosh, I think about this a lot. And I think a lot of people are thinking about this right now, I do work in a real physical, wet lab sometimes. But most of my lab, (quote unquote, lab) is actually in the field.

And when I became disabled in the way that I am disabled, I’m in a position where I have to get infusions regularly to keep myself functional.

And those infusions happen over the course of two days with a nurse that comes to my house, and we are together for five and six hours. Each of those two days every three weeks, right.

So at one point, as an anthropologist, you know, it almost felt like a requirement that I would need to be in the field.

And of course, I can’t do that anymore. I can only go for two weeks. And I’m really lucky to even be in a position to do that. So it’s a huge consideration. And I’ve been incredibly fortunate. I have really wonderful colleagues and a very understanding program officer at the National Science Foundation, who manages my award.

So I’ve been able to convert funds that would have supported me to supporting a postdoc instead, who will actually physically go and do the work that I would have done over the course of six months.

So I think it’s really important, and it needs to be a very big part of the conversation for thinking about how we do all sorts of research, wet lab research, field based research, even computational research, you know.

People who are able bodied or that can fill in the things that are deficits for people that are disabled is a really important part of maintaining diversity in STEM, right? Or really in academia overall.

Adam Levy: 05:26

Do you have any thoughts on how people with disabilities should approach finding a lab or institution that does take these questions into account, and will be a safe and welcoming place for them?

Siobhán Mattison: 05:39

My own approach to this is to be really upfront about it. I think, for me, if I’m going to apply somewhere and tell them that I’m disabled, and they don’t respond well to that, then I have something to fall back on, right, because I’m a tenured professor.

I think for junior folks the landscape might look a little bit different. And people, including myself, as this disability was evolving, I was advised by many incredibly well meaning and highly supportive people to hide the disability, to avoid, you know, notions that I wouldn’t be able to do my job as I was going up for tenure and things like that.

I think I personally don’t feel like I’d advise people to want to limit themselves to go to places that have reputations for being particularly responsive to folks with disabilities, in the sense that I think disabled people should be everywhere.

And I think that every institution should be able to support faculty members and scholars with disabilities.

Adam Levy: 06:44

Well, on the other side, then, do you think there are any, I suppose, warning signs are things that people should be alert to that might mean a particular place is is not somewhere that is going to be very supportive of a disability?

Siobhán Mattison: 06:58

I think it’s really hard to know how to support disability. I don’t think any institution does that perfectly. If I’m being frank.

Disability is incredibly heterogeneous, right? It’s as heterogeneous as anything in the non-disabled universe. So knowing how to support disabled faculty requires really open and frank conversations that people have maybe sometimes been shy to have.

But I do, I really want to, I want to emphasize that I think that the, (at least for some of the institutions that I’m aware of) that the support is getting better, that there are people that are really actively involved in trying to figure out how to support disability.

So for example, you know, at my home institution, there are surveys that are now coming out about disability.

When I needed accommodations, I went to my chair, again, as somebody who has tenure, so the situation is different for me than it is for somebody who doesn’t.

But he was incredibly supportive. And he offered me everything that I needed to make sure that I could still do my job. They’ve given me fully remote teaching, actually. In my case, having the conversations has largely resulted in the things that I’ve needed in order to do my job. But it is really hard.

And you need to envision jobs in a different way for different people. And I think accommodations, to me, it sort of reads like you’re going to provide a disabled person with something that basically puts them in a position to be abled to be non-disabled and to do their job in a way that a non disabled person would do.

And I don’t think that is always realistic for the kind of variety of disabilities that we actually need to accommodate.

So I, you know, I don’t know, red flags. If there is a lot of resistance to even having the conversation, I might be worried about that.

If you call, you know, an institution and you asked to talk to the disability coordinator, and you can’t even set up a meeting with them, I’d probably be a little bit worried about that.

I think, on the other side, if you call and they’re right there, ready to have the conversation with you, you know, I would take that for what it is is a really strong attempt to provide support in the ways that they’re able to.

Adam Levy: 09:16

That was Siobhán Mattison. Siobhán touched on the challenges institutions and labs can face making the accommodations, even when they have intentions to do things right.

In the first episode of the series, we heard from psychologist and neuroscientist Kim Gerecke, who was explaining the value of having her lab at a smaller institution. Kim also mentioned her efforts to make her lab more accessible to researchers.

Kim Gerecke 09:43

Personally, it’s important to be able to offer all students a full research experience in my laboratory.

I was fortunate to have a really nice laboratory space. However the space is downstairs. It wasn’t possible to put a lift, like a traditional elevator, down to that space.

This was deeply problematic, not just because, you know, we’re all sort of at advancing age. It gets very challenging, for instance, to carry really heavy bags of rat chow up and down the stairs.

But also at our institution, we have a sizeable number of students who have a wide range of disabilities. And we would not be able to accommodate a student who has a movement disability in our laboratory.

We were able to negotiate having a chairlift installed. It’s been a challenge because you know, money at small undergraduate institutions, it, it kind of comes and goes. Oftentimes, you just have to be much more patient.

Adam Levy: 10:45

What the right accommodations are and what the right career move and lab will be very so much for the individual.

Logan Gin is assistant director for STEM education at Brown University in Providence in the US. But he previously studied biology and political science, and then did a doctorate in biology education.

I spoke with Logan about how his experiences as a scientist with a disability affected his career trajectory.

Logan Gin: 11:13

Personally I have diastrophic dysplasia dwarfism. So it’s a it’s a type of dwarfism causing short stature, as well as issues with with muscles and joints.

So I typically use either crutches or a scooter for mobility. And, you know, often have kind of accommodations around the house, in the office, in terms of, you know, being able to reach things. Things like, you know, walking long distances, or standing for long periods of time, can tend to be difficult.

And it’s, you know, something that has required some amount of perseverance in both my personal professional, and research life as well.

Adam Levy: 11:55

When it comes to research and I guess I mean, research in most scientific disciplines specifically, how much do you think we we take disability into account when we’re thinking about people’s careers?

Logan Gin: 12:08

In all honesty, er, very little. And I noticed that in my own undergraduate career, you know, in the chemistry labs, and some of the biology labs, spaces not designed with the intention that students with disabilities would be navigating them.

I vividly remember my organic chemistry lab, you know, where the fume hoods were completely out of reach to be able to do any type of physical manipulation, or any type of lab work that was required.

So, in my own training, I faced some of those challenges that really made me rethink kind of what I wanted to do as a career, and actually motivated me in some ways to study what I did with my PhD considering the experiences of students with disabilities in STEM.

My research experiences that I’ve had been able to acquire, haven’t required any wet lab work. So I did some work in computational biology in undergraduate, and work in biology, education research, as a way to still be involved in research and scholarship and science.

But just not in the wet lab sense of, of kind of what we often picture scientists doing.

Adam Levy: 13:25

How big a factor do you think disability plays for some researchers, when it comes to what already is a very complicated question of how to how to choose where and how to continue a research career?Logan Gin: 13:38

I guess what I wouldn’t say is that we should encourage all of our scientists with disabilities to pursue computational careers because they’re more accessible, because they don’t require physical lab space, etc.

Really at the heart and the core of the issue is thinking about research lab space design, and wet lab space design, that is accommodating and inclusive of individuals with disabilities.

So you know, in an ideal world, you know, researchers with disabilities would be able to pursue, you know, what exactly it is they’re they’re most interested in, most passionate about, regardless of the lab environment or the work environment, they’re, they’re going to be in.

Adam Levy: 14:21

Do you have any, any thoughts on how scientists with disabilities can search for a lab where they feel included, they feel able to participate to their fullest abilities?

Logan Gin: 14:34

You know, one thing, for example, in many PhD programs would be doing rotations.

At the same time, being able to to explore advisors and really see to what extent the advisor is considering accessibility and considering the experiences of a researcher with a disability.

I know I personally found that out in my search for PhD programs and really found an advisor who was incredibly accommodating and was a strong advocate for me as a PhD student with a disability.

Adam Levy: 15:09

So looking back, how have your experiences as a researcher with disability shaped the journey that you’ve been on?

Logan Gin: 15:17

From a really early on, even at the K 12 level, I experienced some challenges with inaccessibility of science. For example, I wanted to attend school in my school district that had a college prep STEM program.

And of course, it was in a building that had no elevator, and science classrooms around the second floor.

But it is, you know, somewhat remarkable to think about, you know, how many times in a scientist with a disabilities career, did they have opportunities, or chances to say, “You know, I’m done with this, I want to leave.”

Because, you know, there were many instances in my career where I’m, you know, it’s like “enough is enough, this isn’t for me, I no longer want to be a scientist.”

Adam Levy: 16:09

In your current work in STEM education, how do you hope to, I suppose, address some of the issues that we’ve spoken about?

Logan Gin: 16:17

Despite some of my own personal challenges with navigating STEM, it also motivated me to think about and consider the experiences of individuals with disabilities in STEM.

So I was actually really surprised at the time when I first started my PhD that there was very little research literature on documenting students with disabilities and their experiences in STEM.

So I was able to craft a dissertation around thinking about students with disabilities in different STEM learning environments.

So now what I’ve been really looking forward to in a role, like I am at in a centre for teaching and learning, is thinking about how can we take what has been documented of the challenges for students, and think about solutions and accommodations in ways that promote participation of students with disabilities in all of our courses, but in particular STEM courses, to be able to make that experience as positive as possible, to prevent some of those instances where students would consider “This is inaccessible for me. I no longer want to continue on in science.”

Adam Levy: 17:35

Logan Gin there. Now of course, physical disability is just one dimension through which researchers may experience discrimination and disadvantage.

Kelsey Byers is an evolutionary chemical ecologist at the John Innes Centre in Norwich in the UK.

As well as navigating the academic system as a disabled scientist, Kelsey is both asexual and agender, which have led to hurdles that other academics simply don’t have to face.

We started out by discussing what disability means to them.

Kelsey Byers: 18:09

My relationship with disability is complicated and interesting. At least, I think it’s interesting. So I was born with a genetic disease that wasn’t diagnosed until my 20s, which is very common for people with this disease. It’s called Ehlers Danlos Syndrome.

And I grew up with just a variety of body complaints and things like that.

And I also developed some problems with my autonomic nervous system which controls sort of the unconscious functions of your body, like heart rate, and so on.

But I didn’t really identify as disabled until about halfway through graduate school, when I ran into a group of students, undergrads and grad students, who had a supportive disability community at my PhD institution.

And I realized that the words they were using to describe themselves also describes me. And I realized as well that it was possible to live a functional and happy life while being disabled and that it wasn’t a bad word as a lot of people seem to think it is.

And so, nowadays, I’m very proudly disabled. I’ts a very fundamental part of my identity. I don’t say that I am a person with disabilities. I actually say that I’m a disabled person, because it is a core part of who I am.

Adam Levy: 19:17

Can you give any examples of difficult experiences that you’ve had navigating academia as a disabled scientist?

Kelsey Byers: 19:25

When I was in my second postdoc, we’d go every morning at 1030 in the morning for tea in the tea room upstairs. And I use crutches or a cane, or sometimes didn’t use anything on a good day.

And there was a lift that went up to the tea room, but it was old and it was slow and so people usually took the stairs because it was only one and a half floors up.

And I’d have conversations with my lab mates walking down the hallway towards the stairs. And I’d go and wait for the lift and they’d break off the conversation halfway through and just walk up the stairs and leave me at the lift. And that was really othering.

Adam Levy: 20:02

Now, as a disabled person, how much has that featured in your questions when you’ve been moving around and finding labs to be a part of?

Kelsey Byers: 20:12

As I’ve gotten further along in my career, disability has become more of an impact in terms of how I’ve looked at new labs and new places to move to.

So in the beginning I didn’t identify as disabled when I started my PhD, and I didn’t want to make a fuss or make a reason why my supervisor might not want to work with me.

And so I hid myself away, and didn’t talk to him until after I’d already joined his lab for six months.

When I moved to my postdoc, I didn’t want to tell them because I wanted to do field work, and I didn’t want it to be a barrier.

And then when I moved to my second postdoc, I actually talked to my supervisor ahead of time before he said, “Yes, I want to hire you.”

And I said, “Look, I use crutches,” because that’s what I used at the time. And he was taken aback, but I knew that I had to be comfortable with him, and he had to be comfortable with me being disabled.

And then when I moved to my current institution, where I’’m a group leader, it was something that I basically said, “You know, you take it or you leave it, but you’ve got to reckon with the fact that I’m disabled.”

Adam Levy: 21:12

Given that you’ve spanned, I suppose the spectrum of sharing information about your disability in different contexts, so you have any advice for others on on how much they disclose at what point?

Kelsey Byers: 21:25

It’s a double edged sword, because on the one hand, there’s a lot of stigma around disability, still. Especially certain types of disability are much more stigmatized. Especially mental health conditions.

And so disclosing can be dangerous because it can leave you vulnerable and a lot of ways.

So for example, if you have a potential supervisor, who it turns out is not welcoming of disabled scientists, the flip side of the coin, though, is that, do you want to work for somebody who’s like that?

And so it can be difficult to sort of balance the power dynamic of “I don’t want to disclose because it’s scary. And there could be risks, but at the same time, I need to disclose because I need to know how I’m going to interact with this person.”

Don’t be afraid, but don’t walk into it without thinking about it first.

Adam Levy: 22:12

Do you have any thoughts then on the signs that a particular lab or particular institution might be the right place. Or perhaps warning signs on the other side of things?

Kelsey Byers: 22:23

So when I joined my second postdoc lab, the website actually had all the people in the lab, and one of the people was the person who had a visible difference.

And I was like, very excited, because I was like, “Oh, this is fabulous. There’s somebody who is actually kind of like me, who’s there already. This is a great sign.”

But of course, many people with disabilities or chronic illnesses don’t have any visible signs that they’re different or disabled, or chronically ill, or whatever term you choose.

So I tend to look for things like DEI statements on live websites, or an institutional website, statements that go beyond the legal minimum.

So for example, if you look at a job ad, and it just says, in the US, “Equal Opportunity Employer.” I’ve seen job ads that literally just say those words with slashes in between them.

And then I’ve seen other job ads that have a paragraph that describes the institution or the lab’s commitment to diversity, equity and inclusion. And it really makes a really big difference. It’s a signal.

Adam Levy: 23:28

What can PIs and lab heads do, then, to really try to ensure that their lab and perhaps their wider institution, do go above and beyond to provide a safe and welcoming environment for people with disabilities?

Kelsey Byers: 23:43

It’s hard. And I think the biggest thing that people can do is communicate. For example, we are going to the field, actually, tomorrow.

And one of the things that I do is I have a wellness sheet that everybody in the lab fills out, including me, and we share with each other, the results of our wellness sheet.

And I asked everybody, “Do you have any physical health conditions that might affect your field work? Do you have any mental health conditions that might affect your field work?”

Because you’ve got to ask everybody. If you just ask the person who’s visibly disabled, first of all, you’re telling that individual that they’re lesserm because you have to ask them. Also, you’re not making sure that it’s open and clear to other people that they’re welcome to contribute as well.

Adam Levy: 24:00

Now, of course, disability is just one of, I suppose many metrics through which people face discrimination and inequality within academic institutions. But on a personal level, how has being asexual as well as being a gender affected at all, how you’ve searched for labs to move to?

Kelsey Byers: 23:10

I don’t think it’s affected how I’ve searched for labs to move to but it has affected some of my experiences once I’ve got there. So while I was at Cambridge, for example, there was a really active LGBTQ plus staff group.

And that was really helpful as a resource to feel included. I also was working with an intern when I was down in Panama.

And this person made some really disparaging comments. Told me that I must be a psychopath because he couldn’t understand that not experiencing sexual attraction is actually a normal part of the human experience. And that that’s a normal human variation.

And it was really painful to be told by somebody that I must not be mentally healthy or emotionally or morally healthy, just because he didn’t understand that my sexuality was different from his.

Adam Levy: 25:33

Do you have any thoughts then on how LGBTQ researchers can find labs that they will feel safe and embrace, to be a part of?

Kelsey Byers: 25:42

Safety is the big thing, right? Because you can’t be out and proud and happy until you’re safe, and in a safe context.

Again, I start to look for things like, “Does the lab have a diversity statement? Does the lab lead have Twitter, and if they have Twitter do they talk about issues around DEI, in general diversity, equity and inclusion in general?

“Do they have a statement on the department website or the university website, that’s more than just everyone should have the right to be happy?” Does it actually cover “we understand that communities have experienced oppression and marginalization in science, and we want to encourage those communities to thrive in science as much as possible” Things like that.

So when I was interviewing at my current role, they actually had me meet with the Stonewall representative, which is the representative of LGBTQ plus inclusion efforts at our, at our workplace.

And that was really, that sends a really strong signal to me that my identity was going to be safe, and I was going to be valued at my current institution. And that’s continued, as I’ve worked there.

Adam Levy: 26:41

Are there any other dimensions to moving labs as a disabled scientist that have complicated your experience, or maybe presented compounding challenges?

Kelsey Byers: 26:51

So I’ve moved internationally a lot. And with disabilities, moving internationally is a bigger hurdle, I think, than a lot of people think it is. It is almost an intersectionality, to be an immigrant and to be disabled.

When you’re disabled you are familiar with the laws of your home country, in terms of what your rights are, and what kind of health care treatment you can get, and so on and so forth.

But when you’re moving overseas with health conditions or disabilities, it can be very scary not to know what your legal rights are, not to know the procedures for how to request accommodation of the workplace, or the cultural norms of whether or not you can discuss things like disability.

So in Switzerland, for example, it was very much not a thing that was discussed. And that was difficult for me. It’s really important for people to be aware that moving is a barrier for people with disabilities, and moving overseas is an even bigger one.

Adam Levy: 27:46

That was Kelsey Byers. And that’s it for the fifth episode of this moving labs mini series. But there’s an elephant in the room that we’ve scarcely mentioned that has affected the careers of all researchers these past two- and-a-half-years, in one way or another. I’m talking of course about the coronavirus pandemic.

And in our sixth and final episode we’ll discuss how the pandemic has complicated the career paths and lab moves of researchers. Until then, this has been Working Scientist, a Nature Careers podcast. Thanks for listening. I’m Adam Levy.