In this episode, I chat with Anne about her research around experiences of chronically ill people in the workplace, especially around disclosure. We have a look at how COVID-19 has impacted reasonable adjustments, and some worries we have for the future of chronically ill and disabled people in the workplace post-COVID.
Some more resources from Anne (if it's paywalled, feel free to email me at: enabledinacademia@gmail.com and I'll send it through):
‘Controlled by food’– lived experiences of coeliac disease, Sverker G. Hensing C. Hallert- https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-277X.2005.00591.x
Quality of life in coeliac disease: qualitative interviews to develop candidate items for the Coeliac Disease Assessment Questionnaire, Helen Crocker, Crispin Jenkinson, and Michele Peters- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6038864/
In this episode, I chat with Anne about her research around experiences of chronically ill people in the workplace, especially around disclosure. We have a look at how COVID-19 has impacted reasonable adjustments, and some worries we have for the future of chronically ill and disabled people in the workplace post-COVID.
Some more resources from Anne (if it's paywalled, feel free to email me at: enabledinacademia@gmail.com and I'll send it through):
‘Controlled by food’– lived experiences of coeliac disease, Sverker G. Hensing C. Hallert- https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-277X.2005.00591.x
Quality of life in coeliac disease: qualitative interviews to develop candidate items for the Coeliac Disease Assessment Questionnaire, Helen Crocker, Crispin Jenkinson, and Michele Peters- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6038864/
Welcome to Enabled in Academia, my name is Lienkie Diedericks, your host creator, and hopefully not the only listener of this podcast about how to survive and thrive in academia as a disabled, chronically ill, and/or neurodiverse individual. Here with me today I have Anne Steinhoff, a PhD student researching the experiences of employees living with chronic illness in the workplace. Before starting her PhD, she studied at the LSE and worked in research finance at universities for several years, navigating the challenges of studying and working full time with a severe form of celiac disease, led and a focus on researching and sharing the lived experiences of employees who research concentrates on how performance management in the workplace impacts the lives of employees living with celiac disease. Anne, it's wonderful having you here today.
Anne Steinhoff:Hey, thank you so much for having me and giving me the opportunity to chat to you.
Lienkie Diedericks:I know I think it's fantastic. You've got such lovely insights, especially from your research and personal experience. I know when we spoke before, you noted how COVID has highlighted the complexities of accommodations in the workplace. And I was wondering if we could start there and get some of your insights?
Anne Steinhoff:Yes, of course, like I was saying my research is actually informed by my own experience. So I've seen a problem at hand. And then it was just like, okay, no, no, I want to research this. And the COVID crisis has been quite, I don't know, you can't really say welcoming, but it has opened the eyes of a lot of people to how changes are like exceptions, changes, there are four people in general, so that that is also the case for employees with chronic illness. And on the one hand, it's really great that we now have this opportunity to work from home, and that we're just able to try to find the pace to work that works for everyone, right? But it feels like now, it's like an excuse, oh, you know, you can work from home. So we don't really have to look after you and you longer, because if I can actually monitor your work performance on a computer? Why do I actually need to have you in so I'm a little bit, you know, scared in a way that, that we're not making any effort any longer once we have a way to return to normal life. And we're just saying, well, it worked to work from home. So no accessibility issues any longer. No reasonable adjustments needed any longer. There you go stay at home, work there.
Lienkie Diedericks:Absolutely. I think that's so so important to raise. And it's a real problem, I think that we might face in the future is this idea of out of sight, out of mind. So if you have a disabled employee, or a disabled PhD students in terms of academia, oh, it's alright, just have them work from home, that's okay. And they can just shield indefinitely or, you know, just work from home. And we don't have to make any adjustments in the office. I mean, that saves people a lot of money, and a lot of trouble. And that's a real problem, because it means that disabled people are likely or highly vulnerable to be even further socially isolated in the work experience.
Anne Steinhoff:Yeah,definitely. I don't know what it's like for you. But since March, we have not been able to return to those offices. Is there going to be this argument? Well, if it works for a year, then it's going to work for another year when there is no COVID crisis any longer. And yeah, like you're saying, What impact does that have on chronically ill and disabled employees?
Lienkie Diedericks:Absolutely. At Kings, I know, they've been quite open and transparent about options to go back into the office, I certainly don't feel any pressure to do so which is nice. I guess it's more worrisome for colleagues of mine who are teaching because they still insist on the blended approach, you know, face to face and online teaching. And thank goodness, I'm not teaching. So that's not an issue for me, be very interesting to see in the future, how this will play out. And whether or not you know, it could go either way, whether the old pressures return, that you have to be there all the time. Or there's this expectation of you having to come in, or as you say, you know, something swinging completely to the other end. But we can only hope and encourage our institutions to keep a disabled and chronically ill employees and researchers in conversation and in dialogue and that's why it's important that our voices are heard, so that we are included in future policies.
Anne Steinhoff:I absolutely agree with you. It's crucial to have us sitting at the table making decisions with everyone else involved rather than just having others making decisions about us and not really considering the actual impact because living and experiencing something is completely different to just hearing or assuming what you might need.
Lienkie Diedericks:Absolutely. And and I think if I remember correctly, this is really what brought you to your research as well as your own experience and the need to work off your own experience to actually study that in more detail.
Anne Steinhoff:Yeah, no, absolutely. So I have been one of those cases with celiac disease, which is not very straightforward. So celiac disease is a chronic inflammatory disorder that is mainly affecting the digestive system. And there are people who get, I would say lucky and can live a sort of normal life, or would even say that it is normal. But then that leaves out all of those people who are not able to live in that way. And in the media, it's a lot of this portraying, it's more like a fad diet, because you can't eat gluten, and it's just reduced to Okay, if you don't eat it, you find, which then technically, for those people who have a lot of damage is not very true. So for me in the workplace, when I work finance, I had all these deadlines, and the adjustments that were made that I could take a day off, and all of my line managers were super supportive. But there's only so much that you can do within the system, it was just always this kind of struggle of what works for the organization and what works for the employee. And when I had this one day off, it would always fall within some sort of a deadline worth hundreds of 1000s of pounds. So I could mainly sit at home on the unpaid day off, stay being worried what would happen the next day, if I didn't have managed to get the work done that I wanted to get done in the days beforehand. So it only felt like last time, that was also unpaid. And to me that just felt like that wasn't right, that doesn't seem like it makes any sense. You don't support the employee. And it's also not good for the organization. So that's why I came in and started thinking about why not research this?
Lienkie Diedericks:Yeah, I mean, that's fantastic. And what have some of your initial findings been, if you like to talk about that a bit.
Anne Steinhoff:So at the moment, I'm just at the recruitment stage. But what I can say is that there have been medical journals who look into the general quality of life of patients with celiac disease in the workplace, has been one of those places. I mean, we spend so much time in the workplace, which is something that I find is often neglected, they are usually 40 hours a week, sometimes even more. And it's not really considered part of, you know, a patient's everyday life. So just as part of the studies that two of those researchers did, was that some people or one person said that because of brain fog, she couldn't really focus a lot on the task at hand. So she would sit there and try to put things off, which leads into delays. But if you can't really concentrate, and I mean, everyone probably knows that with a headache, you just end up sitting there and you think, Oh, I already need this much energy. Maybe I should just wait a little bit longer, and it is not getting better. And then the other example was someone with his digestive system issues, being worried to leave the house while still having to go to the bathroom, basically, and having a super stressful commute every single day, just to get into the office. During that, can I make it to a bathroom, whereas a public restroom? And if not, how do I get back home? And I feel like these are things that we're not really talking about it, it takes a lot of courage and effort to get into work like that. And then you're just being seen as an employee was 30 minutes late, so clearly can't perform, even though this is all going on in the background. And that's what I think is that not actually being more productive and more motivating than someone who can't be asked to come into work and just rolls out of bed 15 minutes before being at work, you know, it's like do I think we should have these these more critical questions and not see everything just through the lens that we have always seen it?
Lienkie Diedericks:Absolutely. And I think this question of what you as you were saying all the things going on in the background, I guess that links into a conversation about asking for accommodations and trying to communicate clearly to one's employer. And in our case, to the Academy, exactly what your needs are. And you know, that can link into all sorts of issues about one what warrants an actual, you know, condition or disability that can get accommodation and be, you know, can, can they actually accommodate you?
Anne Steinhoff:Absolutely. I think what you're saying is really vital here, this idea of disclosure, should I really disclose this? Do I have any negative repercussions about disclosing, which is something that I also feel is not very often openly discussed? I mean, we have the Equality Act 2010. And it says that if you face discrimination, because of disclosure, you can take your employer or future employer to court. And that that's basically all that it says. So what do you draw the line feeling comfortable about sharing this information? If you have such an impact on your daily life that it like it affects you and everyone sees it, then? Is there even a question of not disclosing it? And I find that very difficult and traveling in itself? And then like he's saying, what, then when you even know what your accommodation needs are? Because let's let's be honest, a lot of times that is also not very clear for us, especially if you are newly diagnosed? What is it actually, that you need? It's, it's this question of what can be offered, I know that with such individualized diseases like celiac disease, there is no one fits all approach. One person might say, I don't even need anything. And then someone else has very specific needs, like like I had, and, or have. And it's, it's very difficult to then like, like, do you say, I wanted a desk closer to the restaurant? Or like, like, is that even something that your employer could do? Based on, you know, that the building is constructed in a certain way? Or where do you draw the line of how many days do you need unpaid leave medical leave in general. And it's always the struggle with the organization, because if you look into the 2010 equalities act itself, it actually says that it needs to be reasonable, but so that the organization is not overburdened. And that it is practically manageable. And for me that that then becomes a sort of, well, if you have a multinational organization, what is affordable for the organization, clearly, it must be a lot of money in general, based on the profits that they're making. But that's not really what the regulator had in mind. So you're, you're always in this constant struggle in this tension building up with too high really disclose, what is it then that I need? And then having the organization being like, Well, according to the law, I only need to offer the minimum? And how can I get out of that, you know, like, just providing the minimum? And I don't really have an answer for that. I feel it's like, on every single occasion, even if you have the same disease, which changes a lot of times within the experience as well, changing employers. It's, it's always a constant changing environment, isn't it?
Lienkie Diedericks:Absolutely. And I think she brings up a lot of different issues. I think the first thing is that one wonders where the disabled and chronically ill voices are in this legislation. And if they could not be more dynamic processes that can be formalized. So I'm thinking just off the hat here that employees are legally bound to, for instance, assess adjustments every three months, and then, you know, have to provide very good evidence for why those adjustments cannot be put in place. Because, you know, one would feel that this type of social welfare system we have with the NHS and in the UK should be able to provide the social support that disabled employees really need. And so when one does then with the equalities act, if it's so General, how many disabled people were consulted, there must have been consultations, but one can wonder, yeah, it's all about translating that policy into actual practice. And then I think the second thing is is what this policy does is it leaves it open to the discretion of you know, you're left off either random goodwill or careless cruelty of an individual or an organization. There's no standard, isn't it? So, and I think that's something that's quite terrifying to me, is unless there is that one angel that comes across my path and is really understanding, that could actually mean the success or the failure of my career at that point. And I don't think any disabled person should have the balance of their life in the goodwill, the random goodwill of one or two people,
Anne Steinhoff:I totally agree with you. And I am not quite sure how many of us have experienced this. But everyone that I have talked to so far, in my private life, there's always this story of like, you're saying, I had this one good angel in this or that situation, someone who gives you this boost of confidence, that confidence that you should ask for these adjustments, that this is not something in your head, and that you clearly deserve it, or that it's not even a weakness, like it's often portrayed, but that you need to have this in place. Or then when it comes to the organizational level, that one person fighting it out with HR, or managers higher up, who just don't see the necessity in it. And for me, like you're saying that that shouldn't be the case. If if it's considered to to be your rights, as we're saying it's a human right to have these adjustments in place. And why do you have to wait for this one person to speak up for you or clearly to to do something about it. Because at the end of the day, it's not necessarily just anyone, it's usually someone who has more power than you are. So someone who is higher up in the hierarchy, which then means you have to not only build an understanding network, but you always need to have in mind, who can vouch for me if I need to have this? And I just don't I don't see how we got here in the first place. Because that's clearly not what the Equality Act 2010 laid out in any way. It Yeah. And the question is, how do you move on from this? And how do you change that, because I don't really see, unless we have a mentality change in society as a whole, we are always dependent on this one person higher up in the hierarchy.
Lienkie Diedericks:And unless there are robust policies, that actually translates into change in workplaces, that really force employers and, frankly, your colleagues to understand this point of view, you know, it's like you're saying it's a radical mind shift, that then can be shifted into practice. But until we get to that point, where we actually, you know, have it enforced, so to speak, you know, we are absolutely left at the mercy of individuals. I have one example of a simple accommodation, I asked for an open plan office, the standard desk chairs they have, they are incredibly uncomfortable. And I wanted a chair that had more lumbar support and more support around my legs, because of the arthritis in my spine. And I was told that a standing desk would be better, because more people can use it when I'm not in the office. And so it will benefit everyone. Now, that is the example a good example of ablest thinking in the workplace, that's my accommodation should actually accommodate able bodied people as well. And I think that's the thought of the fundamental issue is our accommodations will necessarily mean sometimes that money extra money needs to be spent and accommodations will have to be made that will be uncomfortable for the financially for the institution, or for colleagues, perhaps, you know, it might seem like differential treatment, but actually that is what equality looks like. And that's what accessibility looks like. And it's really challenging those assumptions in our colleagues, but I think only through due process and legislation. Can we really get there?
Anne Steinhoff:Yes, I it's a it's horrendous, like, your example is that that's what it's always about, isn't it this, at the end of the day, it becomes about cost. Because it's cheaper if someone else can then use this as well. So the legislation, when you even have a look into what the law says it's also about these, this saving aspect is not really about having those priority in mind, who would really need these adjustments? And I think it comes back to, you know, in general, when we talk about politics, it's that we want democracy and that we live in democratic countries, but our workplaces, they just get ruled by. Well, actually. It's quite it's quite unclear who is actually ruling the workplace, but we're not really making a fuss about that it should be democratic as well, so that it should be the employees and then clearly, employees with chronic illness and disability would have a say in that as well. So I feel if we would start thought policies in the workplace would be reflecting and we would be fighting for a democratic workplace, then that could be a starting point
Lienkie Diedericks:And a starting point of saying, look, we have value, you know, and our policies are to reflect that we are valued members of society, and we have a lot to offer, and that your business or workplace or Academy will be much richer and better for having us there, you know, the arguments that women had to make during the suffragette movement and saying, well, we will make a better workforce, if you allow us to come and work, it's the same argument that people of color have to make that people from the LGBTQ plus communities have to make, and, you know, being recognized, and it's time to recognize that for disabled and chronically ill people as well.
Anne Steinhoff:I totally agree with you, when I started doing my research, it's, I wasn't quite sure where to start in terms of legislation. And when I figured out that the chronic illness or the chronic chronic illness and disabled person act, but it's the 1970s Act, was the only or the first time that the regulator actually decided that it was time for the government, or in general beroperasi to make adjustments for disabled and chronically ill persons. And before that, the idea basically was if you cannot come into an office, because there is no adjustment, then that is kind of your problem. It was the first time that this idea shifted that society in itself, and as a whole should make an effort to accommodate those who cannot live according to the status quo that we have lived by for such a long time. And when I figured that out, I would I was shocked, because I couldn't believe that that took until 1970 to actually be put in law.
Lienkie Diedericks:Yeah, it's incredible. And then, you know, we are surprised by people still haven't really able to internalize ablest notions, you know that you are essentially a cost you as a person or a cost benefit analysis for the institution, then it's no, it's no surprise that the mentality hasn't changed if we see how far we are still for women's rights. For instance, despite all the legislative changes, it's no surprise that disability and chronically ill rights are lagging behind and the awareness of that a true awareness of inclusivity. And I think one of the cases that really highlights that is when people kind of expect you to be very grateful for the accommodations that they've done. I don't know if you've had that experience.
Anne Steinhoff:I do have had that experience. But you know, something, actually, from my research very recently that happened when I discussed my work is that someone told me that what I was actually doing with my work. So if I'm just going quickly into a little bit more detail, because it's experiences like you discussed in the beginning of employees with celiac disease and how they see the workplace from a performance perspective. So do they feel pressured? Do they feel fine, in terms of accommodating their disease and being productive and work performing according to what their employer expects of them. And in the discussion that I had, someone said that with my research, and the way of arguing about these reasonable adjustments, I was actually just justifying and hiding poor performance. And that that fits quite neatly in with what you're saying. Because that that is exactly the point as a charitable act, you're hiding your poor performance through adjustments, because you're not capable to work in the way I'm saying this now in a very aggressive way. You're not able to do the same work. So you're basically just covering it up. And I was very, like, I was speechless. And I did not know how to come back to that. Because I thought, How can someone is so driven in a way that, that they don't even see that? You know, trying your best is apparently in our society not good enough? And the question is, how do you how do you even accurate with that? Because clearly, it's not? I mean, if you want to see it in a very new liberal way, yes, then you would say it's poor performance, but in any other way. It's just the person doing their best based on how their life has turned out, because any healthy person could and I feel that is something that a lot of healthy. People don't really understand. It could change from one second to the other for them as well. They could be on our side and then I do think that they would not say these things any longer. Where is this then coming from? And how, how do we actually change his way of thinking?
Lienkie Diedericks:Absolutely. And I think that brings us full circle back to COVID. Because I think that's what COVID, at least in the initial months of the outbreak really brought home to a lot of healthy people was like, oh, my goodness, at any point, I could be sick, I could die, I could be disabled. And look at the incredible policy response emergency responses that we've not seen since the world wars, you know, to protect people's lives. Because when Healthy People are threatened with illness and disability, action happens, but when disabled people just offer reasonable accommodations, which really aren't that big. We are denied that. And the COVID situation highlights that beautifully. And we have to hold on to that political will and the political sort of insights we've gotten from this pandemic, because it shows us that if you are as an able bodied person, actually at risk of something like that, then suddenly changes are possible. So we know that are possible. It's just it comes down to people valuing us as less. That's really what it comes down to. Because like you're saying, If productivity is the measure by which you have worth as a person, then yeah, I guess I'm I'm not that I'm not that worth with well. And like on a last last point, I know you said that, for instance, Sr can play is very focused on biomedical research. And they're the big, you know, nonprofits. And I think your discussion here has really highlighted to us the importance of social research into diseases, because while of course, we would obviously love and welcome biomedical interventions that can relieve our symptoms. Until that happens, we are stuck with the social and political reality of our working lives. Just want to say thank you so much for your research. And I really, really hope that more funding will be available for Social Research, because in the end, that's where the changes, material changes in our lives will be highlighted and occur.
Anne Steinhoff:Thank you like this ending is perfect, actually, because I completely agree with you. It's the medical side is important. But as you're saying, as long as we're stuck living in this way, we just need to look into the lives of the people with disabilities and chronic illness a lot more and like you're saying we can only do that through funding becoming available.
Lienkie Diedericks:And so thank you so much for your time today. I think this was a fabulous and exciting discussion. And I look forward to hearing what our listeners think of this and all the best with your research.
Anne Steinhoff:Well,thank you. Thank you for having me.
Lienkie Diedericks:Thanks for listening to today's episode of enabled in academia. Please do like, share and support this podcast on Twitter by following us at enabled an echo. If you have any questions, suggestions or impressions, please tweet at us or send me an email at enabledinacademia@gmail.com. The music for this podcast, a room for two. It's composed by Dan Loeb a bit and it's available on the YouTube Audio music library. As always, access isn't optional for us to be enabled in academia. Yep, I'm making that a thing.