Tackling an ‘ableist’ culture in research

David Payne: 00:04

Hello, I’m David Payne, careers editor at Nature. And this is Working Scientist, a Nature Careers podcast. In this seven-part series, Science diversified, we’re exploring how the scientific enterprise truly benefits when you have a team of researchers from a broad range of backgrounds, disciplines and skillsets. In this last episode, we focus on disability and science. We meet two scientists with first-hand experience of what they describe as an ableist culture in academia, a system designed for fully fit and healthy people but has little to account for those who fall outside those parameters. What can be done about it?

Naheda Sahtout: 00:44

So this is something I was born with. I’m been born with a visual impairment, and it hasn’t been specifically diagnosed as to what it is. There’s tests that have been done, have indicated whereabouts it might be. And I can’t remember, like, whether it’s the macula or the cornea or whatever it is, but it’s something that lets my vision be quite low, so low enough for me to be considered legally blind in Canada.

There’s no surgery that I could do to fix it. There’s, there’s no medication, there’s no solution. As of now.

My name is Naheda. Last name Sahtout. And I’m currently working as a science analyst with the Canadian Food Inspection Agency. I currently live in Saskatoon, Saskatchewan, Canada.

Working on a computer is something that I’ve adapted too. I look close at the screen. So pretty much like, right in front of the screen, you’ll find my face. If I need to enlarge text, I know how to do that. I do get tired if I’m on the screen for long periods of time. But I do think everyone has computer vision now as well because of that.

In terms of work that I’ve done in the lab, I’m usually quite good at doing most of the stuff, I just look very closely at things. If I’m working with pipetting or anything like that I’m just very close. So it’s very difficult for me to work in biosafety cabinets, because most of the time your face is shielded by the door and you have your hands in there. And you can’t really put things closer to you. Using a microscope is difficult, especially with the kind of work that I was doing during my PhD.

Looking at very tiny things, and then trying to, like, pick them up was not something I could do. And so I did have a friend help me with that. And a friend, a colleague. And my supervisor was fine with someone else doing that part of the work for me. In terms of like, classrooms, when we were in lectures and stuff, there was no way I could see the board. That was just something that I could not see. And that was okay for me ‘cos I’ve developed good hearing, I guess, you know, your body compensates you for something by giving you something else and my hearing is quite good. So I was able to capture most of the stuff through hearing.

But most of the time in undergrad your classes are from a textbook. So it wasn’t too bad to just study on my own and do that stuff on my own.

Learned to present very well. Because I can’t see the computer screen that I’m looking at. Most of my presentations are very visual. And that just helps me narrate what I want to say.

Nicole Brown 04:05

Hello, my name is Nicole Brown. I’m a lecturer in education at the UCL Institute of Education. And I am editor of two books, Ableism in academia. And the second book is The lived experiences of ableism in academia. And it’s specifically focusing on strategies for inclusion. So I first got interested in how universities treat people with disabilities and chronic illnesses as part of my doctoral research.

The focus of my doctoral research was the experience of academic identity under the influence of fibromyalgia. And I came to that topic because I myself have been diagnosed with fibromyalgia.

Fibromyalgia is quite a contested condition. It’s an invisible condition, but it’s associated with, right spread persistent pain, cognitive dysfunction, sleep disorders, psychological disorders. And as it happens, in the meantime, that diagnosis was revised. And it’s no longer actually applicable. But basically what I was particularly interested in at the time was, how do people make sense of their academic identity, when they are expected to be functioning at all levels all of the time and be highly scholarly and highly cerebral in their work?

And perhaps sometimes, some conditions, but also some medication, make you a little bit loopy, and you suddenly can’t concentrate as well. So how would you actually reconcile that effectiveness and productivity with a failing body?

And that was really the starting point. So that’s when I started looking at what is it that we can physically and practically do?

What we’re looking at when we’re talking about ableism is just the understanding that we have got an expectation of what is the norm, and we are measuring everything against that norm.

And that is where ableism then comes in, because some people cannot hit that norm. So that is that kind of expectation, that is quite an ableist expectation, because only the people, under certain circumstances with able bodied, able minds will be able to meet that expectation.

In reality, there are many reasons why people can’t meet those expectations. And obviously, chronic illnesses, disabilities and neuro-divergence is one of those issues, you know why people may not be able to do that. And we just have to think about, you know, something simple. And I’m not saying easy, I’m saying a simple thought process here. If somebody is diagnosed with the flu nobody would expect that person to do the 160 hours that they are expected to do under normal circumstances when they have got the flu. They can take time off to rest within that time. Somebody with chronic conditions has got that kind of flu experience all of the time. So suddenly, you’re still expecting people to work 160 hours, but actually, their bodies don’t allow them to do that. And that is how ableism is experienced, because people just feel they constantly have to push themselves to meet some criteria, they will never be able to meet

Naheda Sahtout: 07:40

As a PhD student, and then candidate, I actually never went to sign up for the disability services. And I think it’s called Access and Equity Services. And the reason being is that I didn’t, I don’t know, there’s always a stigma about you know, if you sign up with these, then you might be like, perceived as having inabilities.

And that was something that I was constantly worried about. I didn’t even sign up for the government disability tax credit for the longest time because I always thought, you know, that that would prohibit me from getting a job or, you know, being even interviewed for jobs.

And I realize now that that’s a stupid logic. But that was what was going on in my head. When I first started my PhD, I didn’t want to register. And I wanted to keep it as much on the down low as possible, just so that I wouldn’t be perceived as anybody different.

My supervisor, I did tell him at the very beginning, “You know what, I do have a visual impairment and I am going to be looking at things closer. So don’t be surprised.”

I was quite honest with that. And he didn’t care. He’s the kind of person that doesn’t, you know, “As long as you do your work I don’t really care if you need to sleep in the lab. I don’t. Yeah.”

So he was pretty cool about that. And, and when it came time for me to use a microscope, and I had lots of difficulties. And I had a really good colleague who assisted me through that. And when I went to my professor, and I’m like, “Can I pay my colleague to do this part of the work for me?” He’s like, “Sure, it’s your money. It’s your project. You make it however you want to make it.”

So I didn’t feel I needed to register with access and equity services. I didn’t feel I needed other people to know that I was, I guess, struggling in this
aspect of my project. And since my colleague was willing to assist me, I managed to you know, get the research I needed to get so that I can get a PhD.

Nicole Brown 09:58

So in my mind, the biggest issue regarding ableism in academia is actually disclosure. And that is for several reasons, because we know that there are many people in academia who are brilliant scholars who do not feel comfortable to say, “I have got whatever condition/disability or neurodivergence it is.”

Same is true for mental health issues, especially bipolar conditions. So you can’t (or schizophrenia), those are kinds of conditions where it’s even more difficult to say, “I have got schizophrenia” because of the stigma that’s related to it. So the disclosure part is a real issue in academia.

There are consequences of people not disclosing. So first consequence is that other people who are coming after them don’t really have a role model. So any student who’s got schizophrenia will say to themselves, ”Well, I can’t be a scientist, because no scientist has got schizophrenia.”

So you are missing that role model. That’s one of the issues that we find within any kind of research that has been done on that topic.

And the next thing is, if people don’t disclose, we can’t really help them. So how shall we develop an environment of inclusiveness If we don’t actually know who we need to include and what kind of help we need to get people so that we can develop that inclusivity? That’s something that came out very clearly in the conversations with people. When you ask them about, you know, “Well, why don’t you ask for this? Or that? or Why don’t you say that you have got fibromyalgia, for example?”.

And it was very obvious that, you know, many of them are saying, “Well, what’s the point?” Or, you know, “How does it help me that people know, I’ve got fibromyalgia because it doesn’t actually help me at all”.

So that’s when I realized that what people are physically doing, and they may not do it consciously, but they are literally weighing up. “Well, what do I get out of this by putting myself into that position of being vulnerable? And making people know that that I’ve got brain fog, that I don’t function very well, all of the time? What do I get out of it?

Well, if the only benefit, if you like, the only consequence I’m getting out of it is to become stigmatized to become sidelined, then clearly it doesn’t pay.

Naheda Sahtout: 12:30

Universities are moving towards this EDI. How do we make academia more equity, diversity inclusive. All of this, but the thing is, it’s more, it’s not about how do we make it. It’s about how do we support the students who need it? And I think that’s where we’re lacking. I was fortunate. My family’s supportive. When I grew up in Malaysia I did go to a private school and the teachers were able to, you know, focus on “How do we how do we make Naheda succeed in school?”

And that’s the kind of thing that we need. We don’t need to have policies, general policies around how do we make academia generally, you know, inclusive. But it’s more about well, each student is different. How do we support each student to succeed?

And when I see a professor treat a student as if they’re a danger in the lab, because they’re looking at something closely, or because they have a visual impairment, they clearly don’t know how to mix two chemicals together. That’s a stigma that needs to be completely erased.

If we provide the supports for students, they will succeed, regardless of what ability they have, right?

But if we don’t do that, or if we continue to have that stigma in our head that you know, “You’re visually impaired, you’re colourblind, you’re whatever you shouldn’t be succeeding. “ Then that’s where we fail as an institution I guess.

Nicole Brown 14:05

I’m often asked us to walk universities can physically do to actually improve the situation for anyone who’s got disabilities, chronic illnesses, neuro divergences, and I do appreciate that there is no quick fix, and there will never be a quick fix. Also, there’s never, we’re never going to be able to fix all of the problems all of the time for all of the people because conflicting needs are a series issue.

So for example, if we’re thinking about any kind of online Zoom course, for example, there are people who need to have cameras on so that they can lip read what other people are saying because they are hard of hearing, for example, and they will use the visual clues to help them through that conversation.

At the same time, people with neuro divergences or some specific conditions struggle with sensory overload so they will want to have all of the cameras off because any kind of camera is distracting, any moving image is actually causing them issues, problems, pain.

So as you can see here already, there is a conflicting need between having the cameras on and having them off at the same time. We can’t physically do that. But that doesn’t mean that we don’t try. It means that we are realistic about what we need to do. And we need to basically try to be as accessible and inclusive as possible. So in terms of the architecture, having a ramp in the front of the building next to the staircase is a starting point.

Because why should it be that the person with the wheelchair has to use the elevator for, you know, like dustbin, that is usually being transported in that elevator? Or they have to use the back entrance? Or they have to go around the building to use the delivery slot? It’s not fair, it’s not it, you know. This is not something that’s, that’s fair on those people, because obviously, that’s quite degrading as well. So we are treating those people differently. And at the moment, that’s the problem.

Naheda Sahtout 16:10

For me, it’s also about raising awareness and educating others, especially in terms of trying to remove the stigma around disabilities, having disabilities, and higher education.

We’re sadly not, not to where we should be. We’re, I think we’re quite behind in this. Because when I see that there’s still a stigma of someone in a wheelchair, or someone who’s visually impaired, or someone who’s hard of hearing and there’s no supports in place to immediately provide, then I think we are still a long way to go in terms of that.

So you know, raising awareness, educating others about this. Advocacy is great, but I’m more of a believer of advocacy that leads to change, as opposed to just advocacy that just leads to words being said.

Nicole Brown: 17:14

I feel I have been entrusted with something and it needs to be taken further. I mean, there are so many stories that I have heard and people get in touch with me regularly telling me about how they feel excluded, discriminated, how they feel lonely, and isolated.

There are so many issues around the lived experience of being chronically ill, disabled, neurodivergent. So it’s really important to kind of get that out. And I mean, yeah, that’s why I have spent quite a lot of time on activist work as well because I can see what difference it is making. And I’m lucky that I’m at an institute where I’ve had the opportunity that tell people about my work, and not only have they listened, they have incorporated pretty much everything I’ve asked for.

So that is really exciting to see the changes that have happened at my own institution. And, you know, I can see that it works. So that’s nice.