Podcast – Exploring Equity, Diversity & Inclusion (EDI)

Voice Over:

The Dementia Researcher podcast, talking careers, research conference highlights, and so much more.

Dr Jodi Watt:

Hello and welcome to the Dementia Researcher podcast. Today we explore a crucial, yet often under-discussed aspect of research and related environments, navigating the world of EDI or equity, diversity, and inclusion.

Hello, I'm Dr Jodi Watt, a postdoc at the University of Glasgow. And in my day-to-day job, I currently look at drug repurposing for dementia. However, I'm also incredibly interested in equity, diversity, and inclusion in the research world, both from a professional and personal perspective as a queer and neurodiverse person. I wanted to speak with some other people who are just as interested as I am and discuss the current landscape. So, without further ado, I'm delighted to introduce two experts on the topic, Dr Hamied Haroon, and Dr Nikou Damestani. Hi, everyone.

Dr Nikou Damestani:

Hello.

Dr Hamied Haroon:

Hello.

Dr Jodi Watt:

Hello. Okay, so I don't think our listeners have met either of you before. Nikou, why don't you go first and introduce yourself?

Dr Nikou Damestani:

Sure. So, hi, I'm Nikou. I am formerly a postdoc and I currently just keep chugging along with all the different EDI work and initiatives that I got involved in through my academic career. I also worked in Ageing research when I was working in academia. So, I'm just so happy to be here and to also to see Jodi and Hamied because we've worked very closely together over the years in this space. So, I'm excited to dig into the topic.

Dr Jodi Watt:

Sweet. Yeah, it's great to see you both as well. Hamied, do you want to tell us a bit about yourself just now?

Dr Hamied Haroon:

Hello everyone. So yeah, I'm Hamied Haroon. I'm a research scientist at the University of Manchester. I also chair the National Association of Disabled Staff Networks. And yeah, we're doing some great work in the sector and hoping to change experiences. But yeah, it's such a privilege to work with Jodi and Nikou in the ISMRM and all the inclusion work we've been up to.

Dr Jodi Watt:

Thank you. Before we get started, I should acknowledge that we're all based in the UK, and we may not reflect the sort of global EDI situation in our discussions. However, a lot of the issues are fairly universal and hopefully some of the things we discuss will be more broadly applicable. I also want to note, before we really get into things, that the discussions that we have here are reflective of our own opinions and don't necessarily reflect the institutions or organisations for whom we currently work or have previously worked. So just to get that wee disclaimer out the way.

Okay. So, I have to confess that I haven't always been as knowledgeable as I am today. My initial interest in EDI was definitely self-motivated to better understand myself and why I didn't fit into a norm. But such a big topic that the more I learned, the more I wanted to know. I'm a bit of a hothead and the injustices that we often see in the treatment of minority individuals are something that I personally I can't ignore or keep quiet about. So, I just wondered, you've touched on it a little bit with the introduction, but if any of you wanted to share a bit more about your own personal journeys as to how you got involved in EDI, if you're comfortable to do so.

Dr Nikou Damestani:

So, I definitely resonate with what you said about not always being super impassioned or an expert on the topic. I think that's a very natural level of progression as we work through, especially the different privileges that we have and the different experiences in the world that we have. And I think definitely by the time I got to my PhD, I'd experienced enough of very different interactions, let's say, compared to what I was used to growing up. And I realised that maybe the problem wasn't me and actually the things that were happening around me and the kind of pervasive cultural expectations from academia in general. So yeah, my journey into it, again, same as you, were very personal. Very much to do with how I see my identity, identify as mixed race. I know in some places that's not appropriate terminology, but for me that's how I choose to identify.

And I have always assumed that because I'm white appearing that some of the experiences I've had have led to that being a benefit. However, when people have then learned about my actual identity, that then comes with different stigma too. So, it's been a really interesting journey for me personally as someone who has reached some of the benefits but equally experienced then stigmas in different spheres. And that's been definitely a journey for me in EDI and led me to being very passionate about understanding why it is that I've had certain benefits that others haven't, and equally what can I do with my voice to help change that essentially.

Dr Jodi Watt:

Hamied, anything you want to add to Nikou's very impassioned introduction?

Dr Nikou Damestani:

Sorry.

Dr Hamied Haroon:

Was amazing. That was fantastic. So, I've been a disabled person all my life. I don't know anything different, but I'm treated differently by "normal people" and expected to just fit in the way people do things and with places and equipment that are not accessible to me. So, when I was little, I had to go to a special school for my primary school years and there was no science. It was just like we had English and maths and we had lots of physiotherapy and medical appointments and wheelchair dancing and sports competitions, which were great. But science and the more academic type of things weren't there at the school I went to. So, I was really lucky actually that in Manchester when I got to high school years. Manchester at that time just started to integrate disabled children into mainstream school.

So, I got to go to a mainstream high school, probably one of the roughest in Manchester, but that's where I kind of got exposure to science, to labs, to and TV programmes at the time. You guys are way too young for this, but tomorrow's world, oh my God, and Star Trek and things like that, just they just blew my mind, what we could achieve if we opened our imaginations. And science has always played a part in my life in understanding the condition I have, which is a genetic condition. So, like I said, I've been disabled all my life and there is no cure for the condition I have. But you can't make me normal. And all through my childhood being disabled was a huge stigma, something that I felt really ashamed of, really bad about that I was disabled, and it was kind of used as a bit of a taunt against me.

But then when I found out about the social model of disability and that actually were not the problem, the problem are the barriers in society, those attitudes and those stereotypes in society that actually are the barriers. They make us disabled. But in that way, I definitely identify with being a disabled person rather than a person with disabilities. And being in Manchester is amazing. Then I learn about the history of the whole for the disability rights movement. Manchester was one of the hotbeds for that in the good old days. So yeah, I'm very proud to be in Mancunian and be disabled and to be a Pakistani heritage as well. The curries are just great, especially in Manchester.

Dr Jodi Watt:

Thank you both for sharing such insightful introductions to yourself. That was very nice to hear. Although obviously circumstantially not the greatest, but I think that's something that we should definitely explore a bit further and discuss a bit further later on, particularly within the context of academia. But I wondered before we did that, because obviously I'm using the word equity rather than equality, and that might be something that our listeners really notice as a difference compared to what they might have heard before. So, I just wondered, Nikou, if you could give us an introduction as to the concept of equality, sorry, equity, diversity, and inclusion and why we're seeing equity instead of seeing equality people might be expecting us to.

Dr Nikou Damestani:

Absolutely. Yeah. It's a very subtle but very important difference. And the analogy I've always seen, and I wish I had the citation for the person who first put it out there, but I think I've seen it so much now that I don't know that I could trace it down. But if I do find it, I will share it as a resource. Is that you see three people trying to reach for an apple from the tree and they're of different heights. So, someone who's taller naturally is able to reach the apple more easily. So, equality would be giving everyone the same booster step so that everyone has a better chance of reaching that apple on the tree, whereas equity is adjusting the size of that step so that everyone has an equal chance at actually reaching it in the first place. So, it's acknowledging people's initial circumstances and accepting that some people naturally have a leg up in life, so other people in order to make that goal achievable for other people, some people need additional provisions.

It's not just that you can give everyone the same thing and say, well, everyone had a chance at it. It's no, some people naturally start further back or lower down away from the tree. And that's a product of societies that differs in different societies as well, which is very important to acknowledge at a global scale. We're coming from a UK mindset, so there's definitely institutional factors, systemic factors that are specific to the UK. But in other places it might be, it could be anything from ethnicity, sexuality, ability, it can be anything that is the reason you are set back, and some things will be advantages in other places compared to here. So that's my understanding of equity versus equality. And I always like that visual of the apple because it makes it so clear that it's about getting that chance and really getting that opportunity.

Dr Jodi Watt:

I think that's a great explanation and I think it's also important to realise that particularly a lot of our listeners are going to be from an academic perspective and academia particularly for me at least, is where the difference is really key. And obviously within the UK we're covered and supposed to be protected by the Equality Act and there is nuance to that that falls more in line with equity than it does equality when it comes to actually acting on the act and following along with the guidance given. So, in that sort of regard, I just wondered what you both think EDI looks like in academia right now. Do you think it's doing good, bad, could do better? Do you think it's improved over the past few years, maybe like five years or so?

Dr Hamied Haroon:

Sure. Yeah. So also, just going back to the last bit on equity. I feel like equity also has that connotation of justice about it as well. So, you're trying to be just about the inclusion of people in society. And I love that. So, when it comes to EDI, equity, equality, diversity, inclusion, something for me that goes on in that area within academia and research more generally is that there's much around gender equality. And now race equality is also quite a big thing with the chart marks that are out there as well in the sector. But disability is something that kind of goes under the radar a lot of the time and feels like the poor cousin compared to other aspects of the EDI a lot of the time. And so much of the work that we're doing on the national level is trying to raise that voice and make sure disabled people are included in academia too.

In terms of change, I think there's been a lot of talk and a lot of maybe data collecting and studies going on over the last 10, 20 years, but I feel like we're still at the same point we were all that time ago. There are still issues people face on a day-to-day basis. Institutions are getting awards, they're given accolades. When it comes to EDI, being the cynic I am, why then are people still struggling? Why are people still feeling those injustices and feeling the kind of barriers and discrimination we still do in the workplace. Still around gender, still around race, individual people are not experiencing a great time. So, I believe academia still has a way to go.

And there's this whole notion of what you have to be to be a perfect academic, like you got to be on the go 24 hours, you can't eat, you can't go to the toilet, you can't have caring responsibilities. So, I think there's a lot of work to do to break that down. I'm sorry, I'm going on.

Dr Jodi Watt:

Yeah, I mean we're still seeing situations, aren't we? Where more men called, I think John than any women have Nobel prizes. That's wild. And also, I think that paints a really intense picture for although there has been improvement, and I definitely agree with what you're saying about disability being like a poorer cousin of the situation, which is in so many ways, so awful and terrible. And I think that it's such a difficult thing to navigate, isn't it? And that's not an excuse, but it's like for every move that we seem to make to bring things forwards, there seems to be another area that's rejected or has a lower improvement in it. Even for me, as someone who has a lot of privilege in a lot of ways, as someone who doesn't conform to gender but uses, they and she as pronouns, a lot of people take she because it's the path of least resistance, even though that's not my personal preference.

So, in certain circumstances I feel like I have to use they even if I wouldn't want to, so that my decision and my identity is respected. And that's something so simple. So then when we start getting into the massively complex things, it just becomes so much more. I feel often told; it becomes so much more difficult. I don't think it is a naturality a lot of the time, but it's just, yeah, I feel sometimes very dejected by the fact that people can't even get pronouns right. And that's a word, it's not even an action, it's not a physical change in an environment, it's nothing like that. And everything should be equal in that regard. My pronouns should be just as important as someone getting a specialist bit of equipment and vice versa. But just to me, in my cynical brain, doesn't feel like that's the way that things have gone thus far. So yeah, I don't know if you want to share anything or.

Dr Nikou Damestani:

I guess I think you've both covered definitely the question, but I have to because it's important to stress the most beautiful word in EDI, which is intersectionality devised by Kimberly Crenshaw. So, you've both kind of touched on it where there is this sort of prioritisation system that takes place in academia where you have to have one ambassador of one particular topic that then pushes the initiative forward. And in reality, we all have so many different identities within ourselves. How can we expect to just push forward one thing to promote one group? And even within that group, people are struggling in different ways. And I think academia though I'm no longer working in academia, I was working in it for what? Eight years, I think. And in some ways EDI is and isn't the reason I decided to take a different path.

I did see changes in my case studies, my day-to-day, but I think a lot of it was I was seeing changes not in terms of actually improvements, but more just vocal advocates. I was starting to see those people, for example, meeting you two, if I hadn't met you two, I think I would've felt incredibly isolated still within the community. And I think that says a lot is that okay, the actual physical, systemic, systematic changes are not necessarily happening yet, but we're talking about them. And in a way that is a change and that is something, I don't think a podcast like this would've necessarily happened five to 10 years ago because there would've been so much fear about, but what could we say and are we allowed to talk about this topic and so on.

So, I think the change is low level, is grassroots, but I feel it coming. I feel the tiptoeing is there. It's just a case of is it ever going to go from rain to a thunderstorm? That's what I'm hoping to see anyway.

Dr Jodi Watt:

It's maybe also important at this juncture to mention tokenism and how academia often does tokenism because I think that's kind of a rock in a hard place situation for academia sometimes. So, for people who don't know, a simplistic explanation of tokenism is where you essentially have a vocal person, say for example me with regards to gender and your diversity, who is willing to speak on the topic, who then ends up speaking on the topic all the time because they are vocal about their identity. And it's great that the representation is happening, but if you are the person or the token, it is exhausting. And I think what you're saying is definitely right. We're definitely in a grassroots scenario, but I'm excited for the rain when I'm not the only person who's talking about non-gender conforming identities.

Dr Nikou Damestani:

Yeah, I think a lot of people don't realise because I've been that person too and I still am. And I think a lot of it comes from the fact that that I am relatively confident at public speaking. I would not say I'm very comfortable with being as vulnerable as I have had to be with myself and my experiences in public. I hate that process, frankly. But I, again, it's one of those things where it's I want to see the people who are rallying behind me and wanting me and to support me as well in that process. And I think we've been able to do it for each other here in this group. And I'm sure we're going to talk about the organisation that we work in a bit later on in the podcast. But without that, it's incredibly isolating being the token, incredibly isolating and incredibly hard and very emotional. I don't think a lot of people really appreciate how hard it is to be the one who speaks.

Dr Jodi Watt:

Yeah, for sure. I mean even with bringing it back to Dementia Researcher briefly, even with my blog posts there, I think I've maybe written 10 now and every time I'm like, oh boy. Like I'm releasing this. And this has parts of me in it that some other people who focus quite rightly more on methods or whatever, don't quite have the same parts of them in those posts. And yeah, it's my choice, but I do it because I'm stubborn. I don't do it because I like it. I do it because I want to make it better for the people that follow behind us, as I'm sure is a component of it for both of you as well. But my gosh, is it tiring?

Dr Nikou Damestani:

Yeah, it really is.

Dr Hamied Haroon:

I think one thing that helps with this tokenism or kind of acts against that, that tokenism is to be part of a network, to be part of a group of people who you share your identities with. So, for example, at the university, having a disabled staff network, being able to sit with people who you can be open with, who understand you and you understand them kind of thing. And you can share that identity around being disabled or being Black or being trans or whatever it is but having that kind of community and that backing. And sometimes when I'm invited to do whole load of talks, I don't know why, but when I kind of feel like I'm representing my colleagues in that way and speaking out, making sure that we kind of make sure people know that we're there. But that thing of allyship is so really important as well.

Getting allies on board who maybe don't identify with us, but they want to learn. They want to learn about our lived experience and what it's like for us on a day-to-day basis. We want to go into situations where we're not there and nobody really cares that we're not there and shout about it and say, why are these people not being represented here? Why are these people not being invited into the party? Because that's what kind of EDI is about as well, is that you are being invited to a party by you being asked to dance on the floor. So that kind of thing. And I think allies can play a great role in that.

Dr Jodi Watt:

Yeah. Just to follow up on what you've touched on a little bit there, Hamied, you've skipped ahead a little in line.

Dr Hamied Haroon:

Oh, I'm sorry.

Dr Jodi Watt:

You're fine. But I think this is a good juncture to talk about it. So Hamied, you launched the National Association of Disabled Staff Networks. Do you want to tell us a little bit about that, because I think that's quite a big deal.

Dr Hamied Haroon:

Well, thank you for letting me talk about it. So yeah, back in 2007 when I was early on in being a member of staff at the university, I'd finished my PhD and got my research post. As a student the university was brilliant at supporting me as a disabled student, I could go to the disability services and I could ask for advice and support, but as soon as I became a member of staff, all of that disappeared. There was nothing available to disabled staff at the university, even though I was still disabled. Still needed the same support, the same access. But yeah, there was nothing at the university in that way. So, the university had to actually publish, I think a disability equality scheme or something, and members of staff who had disclosed, I hate that word, but who had disclosed that they were disabled, they were invited to come together as a group and help the university put the scheme together.

So, from that, we established our Disabled Staff Network. One of the first things we did was to get the university to provide support to disabled staff alongside what was already there for disabled students. Just made sense. And for it not to be in occupational health, oh my god, or in HR or anywhere else, but to have a dedicated support service for disabled staff. And that was the first thing we did. I had to have a one-to-one meeting with the Vice Chancellor of the university at that time. I was breaking it, completely breaking it, but it was brilliant. The outcome was we got those services in place. So that was a great achievement, and we went on to do other brilliant things. But then disabled staff networks were starting to emerge in other universities and NHS trusts. And so, everyone wanted to know what we were doing, how we were doing it, how we were moving forward with things.

So, we decided let's do a national conference and bring disabled staff together. And we had a hundred people come from all of the country on the only sunny day in Manchester that year in 2014 was. And it was great. We had sessions all about invisible disabilities and hidden impairments like ADHD and HIV and mental health conditions and stuff like that. It was just brilliant. And that's where we launched the National Association of Disabled Staff Networks. So that's been going for the last 10 years. This year is our 10th birthday. So yeah, we are really proud of being a really strong community of impassioned disabled people, but we're doing it for ourselves where we're leading ourselves and we are a community of disabled people. So again, it's such a beautiful space where we can just be ourselves, be so open about the good things we experience are also those barriers that we all face on a similar level across the whole sector.

It's not just one university where disabled staff are struggling, it's all across the board. But to be able to come like that on a national level and share that is a great thing. And then we've got projects and things going on as well where we're trying to change things, hopefully, for the better, talking to the research councils and Wellcome Trust and others to make some change. But we've had interest from Canada and Norway as well. So, we're kind of branching out, and I'm going for global domination, global domination, definitely. We're going to have one of those kind of Star Trek style global. We're going to have one of those Star Trek style federation type things.

Dr Jodi Watt:

I think that's amazing and I'm very excited for your global domination. As Nikou said, I think you're the exact right person for the role. Nikou, you were also pivotal in the setup of a very important EDI thing, entity, the inclusion working group within the International Society for Magnetic, Resonance and Medicine or ISMRM. Do you want to tell us a bit about that?

Dr Nikou Damestani:

Yeah, absolutely. So, I've been part of the ISMRM community since the beginning. I want to say towards the end of my master's beginning my PhD. And I, how do I phrase this? I loved the sense of community I had from within my institution. I had fantastic PhD colleagues and a wonderful supervisor, two wonderful supervisors I should say. But when I went to my first conference, I was terrified. Terrified. And I felt that a lot of the interactions I had, be it things like people not being comfortable shaking my hand for whatever reason, maybe I don't know why that was. Honestly, in hindsight, I cannot for the life of me figure out why that happened. Whether it was standing with someone at my poster and the man next to me being asked the questions and not me. I couldn't have been the one who did the work, things like that.

I wanted to talk to someone about it, basically. I just really wanted to find someone who I could talk to and feel safe doing so because when you're in the beginning of your PhD, you're not really that confident in the sense that you for some reason, are convinced that someone could kick you off the programme or not let you get the qualification. It is scary because it feels like employment. It feels like you're employed when actually you are working on a training degree. You are fully entitled to be there. At least that's how it feels in the UK. And not feeling like I had a sense of community beyond the people that I worked with was really, really tough on an international scale.

And essentially, I started pushing for some EDI related initiatives at ISMRM basically to empower trainees. That was my whole thing. Was if you identify as someone who is a trainee, and the word trainee is really broadly used in that organisation where you could be an undergraduate or you could be a 10-year postdoc essentially. It's a very strange phrasing. I thought maybe it's post five years; I can't remember something like that. It's a very broad range. And the more trainees I started to meet or fellow trainees I started to meet, the more I realised I wasn't alone in how I was feeling. And that not only that, but meeting people on a global scale, you then realise. For me, I'm a British citizen, I'm born and raised in London, I feel very entitled and empowered to be from my country, living in my country, doing my PhD in my country.

You start talking to people who are doing PhDs abroad, visas can then be used as a method of getting them to do things that they don't necessarily want to do, holding onto them as PhD students for longer than they need to be because they're free, well, cheap labour. You start realising that actually there's so many things happening globally that no one is talking about.

And then you meet people at conferences who are just burnt out, exhausted, emotional, having terrible interactions regularly for seven days at least if normal. And I wanted to provide a space for people to find people who think like them and share those experiences and then find ways to come up with initiatives that can be a regular mainstay of the conference, and also in the wider community in general. So, I ran for trainee representative for one of, they're, they're called study groups, so like a smaller group that's focused on a particular field of MRI research. I got that position I think in my third year. I was a student representative in our local chapter, so our local group, so the British and Irish group. And then I suppose I just started talking to more and more people who I realised had aligned values and started, they do these sort of mini sessions that they open up to members to pitch ideas.

And I pitched a few on inclusivity and they got selected. So, I started to meet more people through that and eventually I basically garnered this network of individuals who I knew I could rely on. And then eventually just got the confidence to talk to leadership and said, "Look, I'm going to set up this initiative called the Inclusion Working Group and did it with Jodi and Hamied." And we very much were, this is what we want to achieve. We want a place where everyone can get together and virtually obviously because global and just share how they feel about the conference, share ideas, feel like they're actually being heard, especially the trainees. But everyone is welcome to join of course. And really just let people know that someone is listening, and someone wants to do something about it for you. And okay, it might not happen next year, but it will definitely be on their agenda at least for that year, for the following year, for the following year. And that was pretty much where it came from.

I've been EDI rep in my department in my PhD. I just very much put myself out there, which I know is not very easy for a lot of people to do. But with the kind of things that I was seeing and experiencing, I know I'm being very vague about some of the things, but for my own sake, vulnerability is hard. It was so worth it. The first few times I had people come up to me and say, I'm so glad this exists, or I'm so glad we had the opportunity to talk about this with the president of the conference, or I'm so glad that you are doing this work. I don't have the courage to do it myself, but I know I can always come to you. And I somehow became a point of call for a lot of people when they wanted to talk about these things.

And I don't know, I think it just came from openness, it came from interest, it came from passion, and it came from honestly just being really tired of seeing a lot of bad things happen to people who frankly were so incredibly talented and so under-appreciated that it just was upsetting. So, the inclusion working group is essentially just a community that I wanted to build. And off the back of that, I am now an EDI representative of ISMRM for the trainees as well. So Hamied actually nominated me, so thank you for that Hamied.

And yeah, now I get to sit with the presidents and chair and board and stuff, and I actually get to pass on all those amazing thoughts and feelings and ideas that the community have, and I get to try and make those changes. And I'm really happy that a lot of them are happening this year. We have a fantastic chair of the committee, and he is just absolutely so empowered and in passion to make the changes that everyone wants to see at the conferences. So, it's just been a really lovely space to be in. So, to be able to have my foot in both has been fantastic. Yeah, and obviously none of it could have been possible without Jodi and Hamied both of your support because as founders brainstorming and trying to figure out how we want this thing to look has been amazing. And I know you both had to take a step back eventually, but it couldn't have happened without either of you.

So, I can't take all the credit for it really. But yeah, I'm obviously happy to keep pushing it with your support. Sorry, that was long.

Dr Jodi Watt:

That's all good.

Dr Hamied Haroon:

That was amazing, Nikou.

Dr Jodi Watt:

I think it's really important because it highlights, yes, we've talked about the exhaustion that comes from being othered the world of academia, but I think it's also really important as well to highlight what you can do within that space if you put your mind to it. I mean you both know, but for the intention, for the purpose of the audience knowing, my two massive passion projects within ISMRM were get rainbow pride ribbons, get people who are senior to use their pronouns. And I've done both of those things. And comparatively they are small, but I am so proud of myself. Because I think as well with the pronoun’s thing, just to not flock a dead horse as it were with you guys having listened to me vent about this often. But I think it's so important, even if you don't use unusual or unexpected pronouns, it's amazing as someone who does to see those on people's email footers.

And it was incredible at one ISMRM to have a lot of senior people contact me afterwards and be like, "Oh, it hadn't crossed my mind, but I'm doing it now." It's amazing. And it's little changes like that I think that build up and when they keep building up, they end up being what you guys have both created in your respective scenarios. So yeah, I think one thing I do want to hit on just briefly as well is, I mean if they were listening, I'm not sure they will be anymore, but if we have any sceptics listening to this, they might not fall under any of these sort of protected characteristics as it were in the UK. And they might wonder, what's this got to do with science? They're two different things. I mean this affects, and I'm sure the same is true for both of you, this affects every day of my scientific life. But I just wondered if you wanted to comment on that.

Dr Nikou Damestani:

Yeah. Do you mind go first?

Dr Jodi Watt:

The sceptic.

Dr Nikou Damestani:

Do you mind if I go first on that one?

Dr Jodi Watt:

Yeah, sure.

Dr Nikou Damestani:

Because I have an anecdote on that, which is, so we have the suggestions box at the conference this year so that people could write anonymously what they wanted to see at the conference. And it was actually fantastic. I had over 200 to go through and I was just carrying them in my suitcase, reading through these suggestions and compiling them. But one of them was, I don't see the point in this. EDI has nothing to do with science. Someone had not only the courage to believe it, but also to write it down and put it in a box that was for EDI. So, I think that was a real moment for me at least to go, if that one person exists, that one person who happen to walk past the booth and did that, then more do and more are feeling it internally and maybe not expressing it. That's all it takes is just one person.

And that was really disheartening. But at the same time, very much a wake-up call that not everyone sees it the way we do. And a lot of that comes from privilege. A huge amount of that comes from privilege. Because I don't know that someone like that would necessarily know how it feels to have, for example, your supervisors or your lab group sit in an office or building or meeting with you and listen to everyone else's thoughts but not listen to yours or systematically target you for bullying, harassment because that is what is happening to minority groups in academia. So, to say that they're not tied is naive, is ignorant, frankly. And the outcome of that is people being less productive, less happy achieving less doing studies worse. Even if you want to take it away from the emotional perspective, if you are mistreating your employees, they will not perform as well. Simple.

And there's hundreds of studies that have shown this that have shown that so many talented people are not performing at their best because of their circumstances or the environment they're in. So, for sceptics who are like science in this, don't relate, they do because then you are not going to get the best individuals in your lab, you're not going to build the best lab, you're not going to have good work, there's way more likelihood of issues with scientific integrity and so on. If someone is believing in your vision and not believing, you'll support.

So, I'm very tired of the EDI doesn't count in science argument. Because I've seen it in my day to day. I have seen people come out of meetings with their boss and go, oh, I can't think straight and I don't know how to do my job and I'm anxious and I feel like I can't perform well and I'm an idiot and people with the most amazing backgrounds and the highest amount of talent, and they're sitting there saying, I'm not good at my job and I'm making mistakes. And it manifests so obviously when you see it and then when you realise that a lot of that is tied to their identity. It's frustrating when sceptics still exist. So that's my message for sceptics, is that it exists and just like that, please.

Dr Jodi Watt:

Wholeheartedly as well. I think you're bang on there personally because I think as you said, if you must, you can take the emotion out of it and you can see that there is a wealth of evidence that suggests what you absolutely do not want in science is an echo chamber of the stereotypical white male scientists talking to a bunch of other white male scientists. That's not where we break boundaries, that's not where we make progress. And I think as well, I think this is a great point to mention as well, we care about our patients irrespective of what we look like as scientists and how we get on or don't get on or all the related politics with each other. We ultimately care about our patients. We're trying to work to better their lives. But also, EDI affects our patients. We see constantly that we're doing research in predominantly white populations.

There are certain contexts where people recruit non-white populations and then take those populations out of a final analysis because there aren't enough people that fulfil that criteria. But they will still, and again my opinion, but they will still pat themselves on the back for their diverse recruitment. And the two things don't hold together. You might have recruited diversely, but you haven't then followed it by doing the science diversely. And I think our common area together is MRI. And I think a fantastic example of how we let down our patients is I think the paper came out in 2004. It's quite old, but it was like a 15-year-old boy who had twists in his hair, which are stereotypically not a white hairstyle. And they had an artefact that people hadn't really seen before and they were like, what is happening? And it was because the way that his hair was twisted was using black beeswax.

Now black beeswax contains iron oxide and iron, and MRI is a chaotic time if you don't control for it, or you don't know that it's going to happen. So, I think something like that is just really important. That person was a patient, that person needed an MRI scan, but have we thought fully about that person's identity when they're going into a scanner? I don't personally think we have. I think as well with MRI, we have a lot of brain templates, but all of these brain templates are based on white populations. I mean there's even in CT who's a man called Colin, who's been scanned 27 times, which is mind blowing to think about. But it's still used in CT even though the templates that we use in MRI are more like, oh, we scanned 152 people. They're still okay. But the research is showing that they don't stand on Asian populations, they don't stand on African American populations. They don't stand on essentially any non-white population.

So, we also owe it to our patients as well to think more diversely about our research that we're doing and how we actually approach our research because you can also have the greatest piece of research in the world, but how good is it for your patient if your patient is not white, cis, able-bodied? It might not be good.

Dr Nikou Damestani:

I mean, even to this day, people exclude if left-handed versus right-handed. So, it's, yeah, it's outrageous. And the thing is, I get it to an extent in the sense that we want to be able to make generalisations so people go, let's find the most homogenous group so we can make a generalisation about that homogenous group. But then whereas the clinical utility in that, whereas the day-to-day general population utility in that it there just isn’t any is the answer to that question that nothing that you are doing is useful if it is not representative. Simple. And then you can't make generalisations to help people in the long run. Sorry, Hamied, go ahead.

Dr Hamied Haroon:

It's okay. Yeah, so just very quickly back to that point on EDI in science, what came in my head is what right do white male, rich, cisgender, straight men, what right do they have to own Science? Science is part of humanity and on the global scale, the white male is a very small population compared to the rest of the world and the populations out there. And where science has come from. Science has come from distant places like China and India and the Arab world and over in South America even and Australian places. Science come from so many backgrounds. We wouldn't have the science we have today if it didn't come from those heritages if it didn't come from that diversity. The European white man has only been doing science for the last, I don't know, was it a couple of hundred years or something? Science has been going but so much longer before that.

So, what do white men have to own it? And as well, we have so many problems globally in the world. We have so many, what call it health issues? We have so many natural phenomenon going on the climate and stuff like that, that science needs diversity in order to look at those problems in different perspectives in different ways. Exactly as you said before, Jodi, about that echo chamber. And that's not going to get us anywhere. If you just have these white men in a room talking to each other. Things will stagnate. We won't make the discoveries we need to make and push things forward. Only when you have that diversity and that richness of perspectives and understandings of the world and of humanity will we be able to make those great discoveries and get forward. And it shows when EDI is taken seriously in science, how much things can move forward.

So yeah, that's my little rant on that. Then about having EDI amongst the participants in our studies. This is so important right now in the UK we have the UK Biobank study going on and we've got MRI scanners all over the UK right now. And people just go to those centres and volunteer to be scanned and we've got thousands of images from the population. But most of the people who are going to those centres are white people who are being scanned there. So again, we're missing that diversity, that richness in our population. And again, those findings will only, if it carries on the way it's going, then it's only going to be applicable to the white people who are taking part in the study.

So, more needs to be done consciously, more needs to be done to diversify those participants. I was talking to a colleague earlier today and they were talking about how people with learning disabilities, for example, are well, any kind of disabilities actually, and many conditions are excluded from participating in research studies to begin with. So, they're not even part of the research going on. They're never invited in, they're always in the exclusion criteria. These people can't take part. So out you go, and again, that raises so many issues, so many concerns about the applicability of that research.

Dr Nikou Damestani:

I mean to bring it to dementia research as well, given the relevance to this podcast, we know that dementia manifests differently in different races, for example. Now race is a social construct. It's not biological as we know, at least I hope we all know that by now. But it just goes to show how much of that social impact that deprivation, that certain groups experience ultimately has an impact on health. So, if you are then not engaging with those communities for something like dementia, we saw it with COVID as well that it manifested differently in different groups. So, if we're not willing to make changes to our science to better understand what it is exactly that's going on now because it's not biological, it's got to be something else, then we're really not doing the right kind of science to be honest. That can actually help. Then it becomes about something other than helping. It becomes about ease and science is not supposed to be easy.

Dr Jodi Watt:

I mean, we even see that sort of thing in maternal mortality. So that's how-

Dr Nikou Damestani:

It's everywhere. It's everywhere.

Dr Jodi Watt:

... simplistic this can be sometimes. Like birthing children is a workhorse of society, and yet if you are Black, your risk of dying doing it's so much higher than if you're white. So, it is even just these wee things. And then they also, I mean it's not a wee thing, but it should be a simple thing. It's something that happens day in, day out, right? It's a common thing I guess is more accurate. But the impact of that is also a distrust as well. So, we have to a distrust in healthcare, and we are obligated alongside entities like the NHS and stuff. I personally feel that we're obligated to try and make that better and try and heal that distrust, but it is a sort of systemic change that needs to be made. We're focusing with a lens on academia, but actually there's quite a lot of responsibility for society as a whole to try and sort of address these inequalities that we see on such a granular scale. When it comes down to it, we don't know why that is other than that, seemingly, it's just race.

A similar thing as well, just to bring it more locally to me, not to make this about me, but the Glasgow effect as it were. People in Glasgow die far younger, and if you control for all of the obvious things, it's still a thing that happens, and we don't know why. So are we going to find out or are we going to leave it because Glasgow is considered to be more of a poor city or an unsafe city.

People are entitled to have answers to this and not just go, that's an interesting thing and then never investigate it again. And I'm not saying people aren't investigating it, but I think there's a lot of-

Dr Nikou Damestani:

But a lot of people are as well. That's the problem. I mean, I worked in menopause research, and I remember looking up, I was lucky to work with some absolute powerhouses in the field, but now I see studies going out where they're talking about ageing and dementia, not a single word about menopause or the impacts that it can have. This massive change that happens in women's lives and in anyone who has the necessary biology even, I don't even want to say women, but anyone who has the biology that then experiences the menopause will experience it. It's inevitable. And yet no one's studying it. We're talking about,

Dr Jodi Watt:

Yeah, we're talking about essentially half the global population.

Dr Nikou Damestani:

Basically.

Dr Jodi Watt:

It's like that big invisible women. Where they were like, I don't know why seatbelts aren't saving as much as many women as they are men. Oh wait, we didn't test seatbelts on any women, and we forgot about breast. But some of it is you not a laugh or you cry.

Dr Nikou Damestani:

Yeah, truly.

Dr Hamied Haroon:

During the COVID pandemic as well, disabled people and black people were disproportionately so many more Black people and disabled people lost their lives during the pandemic because of COVID. My sister was amongst those who lost their lives as well. So yeah, there's big questions that need to be answered with the science we have around these issues. They are real issues, and they need to be taken very seriously. I mean, are we ready for the next pandemic?

Dr Nikou Damestani:

That's a big question. I don't want to dig into that one.

Dr Jodi Watt:

A very valid point, and again, I don't want to just put all the pressure on academia here because it is a societal thing that needs to happen, but academia has its role in society, so we can't ignore that. So yeah, just to sort of move slightly on a wee tangent now. Nikou, you've had some experience of working in academia on both the UK and the US. Have you noticed any particular differences between the countries?

Dr Nikou Damestani:

I have, yes. In general, I have to say I'm more comfortable talking about the UK because I was born and raised here, and the US my experience living there was in Boston, it was an east coast city. It was only for two years. So, I didn't get to explore the whole range of EDI opportunities there. I was very fortunate to be part of a group of individuals at my institution called Women in Science, and they tackled a lot of intersectional topics and we very much felt empowered to do so in the environment that we were in.

But there was still, at least from my experience, again, completely personal, there was still a lot of resistance to have the conversation, sometimes. Maybe some of that was because I was a newcomer coming into the group and coming into the institution and maybe my approach was a little different than what's expected in the US in terms of talking about EDI. I'm a lot more direct blunt, let's get to the point, let's make some changes. And I think that was a lot for some people. Generally, though, the legislation is different for sure. The approach is different. I think the intention is the same. I think at least from my experience, there was definitely vocal discussions and such, but bear in mind my location. It may not be the same everywhere in the US to compare that would be comparing us to Europe, like the size-wise and population-wise, I think they're roughly equivalent.

So different areas have very different approaches, and you have to be very mindful of that in the US. In the UK, maybe some of that is because I'm empowered, being British, I'm like, okay, I can talk about this because this is my belief and my country. And although there's in both countries, I feel a lot more empowered to talk about it here. But that was the general vibe I got. People are a little bit more reserved with the approach, but the intention is still there, at least where I was. But yeah, it's just more mindful, I guess.

And it's just a very different cultural approach and it was something I struggled with frankly. There were some moments where I was thinking, I want to make these big waves because I'm only here for two years and I just want to, or just under two years, and I want to make my impact and keep doing the EDI and bring it to the states. But it wasn't necessarily as easy as it was for me here. But why? I don't know. But yes, the biggest thing is the legislation is different in general talking about identity and so on. And that then trickles into a lot of other aspects of academia and research. Yeah, sorry for the long answer, but it's a very big and very tough question because so many elements to it. But yeah, overall, my experience was positive in having the support, but I wish I had been able to do more.

Dr Jodi Watt:

Okay, so I think that's us coming up to the close of the podcast. I would say we've been chatting a wee while and I think we've had a really valuable discussion and I hope the listeners have found it valuable as well. I just wondered if either of you, if both of you had any sort of comments on what you think the most important takeaways from the discussion are today. I think if both of you want to contribute, that would be really helpful. Obviously, you're coming from different perspectives. So, I don't know, Hamied, if you want to take the wheel first.

Dr Hamied Haroon:

Yeah, I guess, giving support, being there for each other really. I guess what I am trying to get at here. In your institution trying to find those networks, those groups, those communities that you can belong to within your network and beyond as well that you can belong to and share those identities with and can be open and yourself in as well. Safe spaces where you can talk about the things you're going through and share them with others and know that you're not alone is such a big thing, especially if you're from a minoritised background and identity. Then having that space, that community gives you a lot of power, a lot of strength behind you. And if you do not identify with any of those kind of minoritised groups, then come forward and be an ally. Try and understand some of the issues that others are going through.

Empathy is such a powerful thing. If you can understand the stories of others and the lived experience is so, so important. Don't assume things about people. Don't assume when you see somebody that they are disabled or not disabled or what their background is or what their race is or what their heritage is, or if they're gay or they're straight or whatever. Don't assume these things about people and help to make the environment more open, more fitting for everybody that we don't have to fit into this mould of being this stupid idea of an ideal academic. We can all be ourselves and bring what we have, our talents and our experiences to the table.

Dr Jodi Watt:

I mean that was very insightful, so thank you for that. I think you also touch or sort of went nearby a comment that I want to say as well. I think with regards to allyship as well, I think it's important to not, although we all are exhausted when we are sort of doing our respective aspects of intersectionality day in, day out, I think it's also important to remember that even if we are not, we do not fall under a certain aspect of the umbrella of EDI. We can also be allies to other groups. And I think as well for me, I often have historically got upset or got a bit in the weeds about my own identity because I mean, sorry if you exist, but whereas my gender nonconforming, queer, neurodiverse role model who's 10, 15 years ahead of me in academia and also works very specifically in drug repurposing. I can get quite lost in the weeds of where is my exact counterpart.

And I think that sometimes that isn't helpful. I think it's important to remember that even though we all represent slightly different aspects of EDI, we have a commonality with each other. And I think that commonality can be really valuable even if you can't find a direct match to your identity as well, which is something I wish I'd realised earlier on in my academic journey for sure.

So, Nikou, did you have anything you wanted to add?

Dr Nikou Damestani:

I think you've both said it really beautifully to be honest, but what I will say is if there's anything you could aspire to be, especially if you made it to the end of this podcast, in which case I'm assuming you're already, very much on your way there. If there's anything, just be a kind scientist, be an empathetic one, be there for your community however that manifests us. I just don't think there's enough pressure put on people to be kind, to be honest. We're so obsessed as academics, to be critical and to question everything all the time and to be the right one that actually, if you just approach your science approach, your community approach, your patients’ participants with just an ounce more kindness than you would regularly. You're way more likely to just surround yourself with the right people and really see great things both in and outside your lab. So yeah, that's my two cents.

Dr Hamied Haroon:

I couldn't agree with you more, Nikou. That was beautifully put. I think kindness is so important. It's so vital in what we do. Absolutely.

Dr Jodi Watt:

Yeah. Yeah. I would love it if not to add to perfection and ruin a little bit, but I would love it if we focused a little less on things like concepts that are quite brutal, like publish and perish, publish, or perish and that sort of thing. And a little bit more on, actually, could we maybe have some kindness here? Because science as a whole is humans investigating humans or investigating human behaviour, or investigating the world which surrounds humans. We are all humans. We are not robots. We deserve compassion and we deserve kindness and every single day of what we do, even if you don't understand their identities, you don't know much about them, we're still people ultimately, and yeah, every scientist, even the stereotypical scientists, deserve all of our kindness.

Dr Nikou Damestani:

Yeah, life's hard, life's too hard to not be kind.

Dr Jodi Watt:

And science is a hard thing to do. It's a hard world under a lot of pressure. So yeah, I think, yeah, 100%. Just a little bit more kindness and science I think would be a very different environment. Totally. Yeah, totally. But yeah, I really want to thank you both for the discussion today. It's been great and really insightful. And I feel like I learned a lot and I'm the person chairing the discussion. So, yeah, thank you so much.

Okay, I'm afraid that's all we have time for today. If you just can't get enough of this topic, visit the Dementia Researcher online where you'll find a fill transcript linked to the resources we mentioned and the biographies of our guests. If you have any questions for our panel or reflections you'd like to share, please post them in the comment section below the show. I would like to thank our incredible guests, Dr Hamied Haroon, and Dr Nikou Damestani. I am Dr Jodi Watt, and you've been listening to the Dementia Researcher podcast. Bye.

Dr Nikou Damestani:

Bye.

Voice Over:

The Dementia Researcher Podcast was brought to you by University College London, with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, leave us a review, and register on our online for full access to all our great resources, dementiaresearcher.nihr.ac.uk.