Conference Videos

Lindsay: Right. Good morning, everyone.

Lindsay O’Dell: Good morning everyone. I'm Lindsay O'Dell.

I'm a professor of Critical developmental psychology at the Open University and I'm also Director of the Graduate School here.

Welcome to the conference. We're really looking forward to an excellent day.

Before we start, I have some housekeeping. And I would really like to introduce the team.

So as I've said, I'm Lindsay O'Dell.

I'm a middle-aged white woman with glasses and dark hair. And I've got a dark, dark blue top on. I'll be introducing this morning with Katherine in a few minutes and then facilitating this afternoon's session and rounding off the day. So I'd like my colleagues to introduce themselves so the rest of the team, so we'll start Gráinne with you.

Grainne O’Connor: Thank you, Lindsay. Good morning everybody. My name is Gráinne O'Connor. I'm a research assistant in the faculty of Well-being, Education and Language Studies at the Open University. I'm a middle-aged white woman with short, greying brown hair. I'm wearing dark brown glasses and I'm wearing a light blue top today.  My personal pronouns are she and her.

Lindsay O’Dell: Thank you - Rachael

Rachael Luck: Good morning. I'm Rachel Luck. I'm a design researcher in the STEM faculty at The Open University, and I'm a middle-aged white woman with long hair and glasses. Today, I'm wearing a navy dress. Thank you.

Lindsay O’Dell: Sharron.

Sharron Jenkins: I'm Sharron Jenkins and I'm the project manager for the next generation project and I've been involved in organising this conference and supporting the team. I am a middle-aged black woman and today I'm wearing a very bright green top.

And I hope you enjoy the conference. Thank you.

Lindsay O’Dell: Thank you. And Katherine?

Katherine Deane: Hi, I'm Katherine Dean. I'm an Associate Professor in Healthcare Research at the University of East Anglia. I'm also the Access Ambassador and I'll talk about that more later in the day.

I'm a middle-aged white woman with short brown hair, blue tinted glasses and a teal-coloured dress, and I'm really looking forward to today.

Lindsay O’Dell: Excellent. So thank you so much everyone. We have tech help, if there are things that that aren't quite going according to plan. So if you have any problems then if you can type in the chat. One of us will help you. Before we get started today, I wanted to welcome you to our conference, Exploring Equitable Research Careers for Disabled Researchers.

I want to give you some information about the day.

You can turn captions on in Teams and you should have information about how to do that in a mail that has been sent to you with joining instructions. If you have any problems, then pop a message in the chat and we'll try and help you.

Colleagues, there's a question about speaker and signers. I don't know if somebody can pick that up.

We're a large group, so we're keeping audience cameras off.

And so conference team, if we keep our cameras off, unless we're speaking.

Presenters, facilitators and interpreters will be on screen when needed, and we have two interpreters with us today. Nijal and Michael, welcome to both of you. We're delighted that you're here.

If your preferred method of communication is sign language and you want to ask a question, please raise your hand in Teams.

And we will turn your camera on so you can sign your comments or your question.

Other audience members can ask questions by typing in the chat box.

We've scheduled breaks throughout the day to enable everyone to plan their day. We will be sticking to time.

Presenters, your facilitator will come back on camera 2 minutes before the end of your allocated time.

You're welcome to engage in the conference in whatever way suits you. The event is being recorded and will be available on the website in a couple of days’ time.

Sharron's also reminding me that we have a Twitter Account a hashtag, so please tweet during the day, OK? I'm going to start with some opening remarks before handing over to Katherine.

And really, just to frame the day and to welcome you.

From The Open University.

So to formally welcome you to this event hosted by The Open University, the OU was set up over 50 years ago with a strong social justice mission to be open to people, places, methods and ideas. And this mission continues to inform everything we do. Relating specifically to disability, we have more disabled students than an average university in the UK has students overall.

That we feel gives us a very particular set of expertise. We're not complacent about that, but we are very proud of that. We're proud that in terms of our researchers, we have a higher than national average number of researchers who identify as disabled or having long term health conditions. The social justice mission is also reflected in our research areas, which should be on our screens

So key areas of research, include critical autism and neurodiversity, inclusive design and disability and learning disability.  We also have new a research area which is looking at the experiences particularly of doctoral students with disabilities, long term health conditions and neurodivergencies.

The conference is part of the university's strategic research plan and within this there's an intention to equitably support researchers, with a particular focus on the next generation so early career researchers but also trajectories and pathways through research careers particularly for minoritized researchers.

Speaker 1: Lindsay, can you just give me a prompt when you want me to move your slides on? Sorry.

Lindsay O’Dell: Yes, please. Yeah, sorry about that. I thought I had control. Let me take control. It's easy, I think, OK. OK. So in terms of framing the conference, we're using disabilities with an asterisk as a shorthand for an inclusive definition of disabilities, long term health conditions and neurodivergences with foregrounding disability, but stress the importance of intersectionality that we have many aspects of our identities, including disability, but also gender, ethnicity, social class and others.

We recognise that language is not clear cut. There are different terms in different politics.

So you will encounter different approaches through the day. For example identity first or people first language.

We want to frame the conference around working from positive intent. We're all learning. I really feel that I'm learning and I've learnt a lot through this conference already, but we want to make sure that this feels like a comfortable and safe space to have conversations.

To illustrate very briefly.

The kind of scale of the challenge from a UK perspective, and I'm smiling because I'm going to be handing over to Katherine in a second, who will pick this up I'm sure. So a couple of slides to illustrate briefly the challenge that that faces us.

So on this first slide I have some information about an annual EDI data report that's produced by UK Research and Innovation so the the latest reports and the data's on the slide, which I'll I'll talk through in a second, was published at the end of 2022. So the this shows that researchers from minoritized groups, including disabled researchers, have lower success in gaining funding from this very prestigious source of funding in the UK.

However, significantly and also unsurprisingly, it's very difficult to understand the data because of the number of applicants who are not disclosing key information about themselves as part of the research process, research, submission process. So they're not disclosing information about disability and ethnicity in particular. And I think this is a pattern that we'll see through the conference. UKRI in their diversity data also note a very similar pattern for PhD student funding, so very low levels of minoritised, particularly Disabled and Black, Asian and minority ethnic students who are attracting funding but difficulty in understanding this data because of lack of disclosure for researchers.

A similar theme is also evident in HESA - Higher education statistics data.

Which demonstrates that there are far fewer disabled researchers than would be expected from the overall population of academics. All of this data reflects disabled researchers who've made it into academia despite the many hurdles and obstacles, there is a significant issue in access to participation in and progression through research careers for disabled researchers.

So briefly, a second framing of the conference.

There are multiple ways of engaging during and after the conference. We really want this to be the start of the conversation.

And there are various ways in which you can do this. The focus for us in this conference as I hand over to Katherine is really on action now. There's been lots of talk about an identification of the issues. However, it's very difficult to see.

action that that really is urgently required. What do we need to do now to address these urgent issues. Thank you. Handing over to Katherine to take control of the slide deck.

Speaker 1: No, Katherine's presentation is coming up separately.

Katherine Deane:  Wonderful.

So welcome to this conference. I'm so excited by it. I think it's a really important time to be looking at it. As we've stated, we as disabled researchers and disabled.

Rachael Luck: Katherine, are you muted?

Katherine Deane:  Nope, not on mine. Not my end. Can you hear me?

Speaker 1: Yeah, we can hear you.

Katherine Deane: OK, sorry. Right, sorry.

So disabled researchers, disabled students, disabled members of staff at universities. We are underrepresented underrecognised and over exploited. Our current practise and working practises are unsafe, not infrequently unlawful, definitely damaging and really costly, and not just in monetary terms, this is costly in terms of recruitment and retention at all levels of career and it results in poorer quality research that it has less relevancy and is less.
responsive to the real needs of the disabled community and of the community in general because there is this modelling of a perfect academic, perfect researcher, perfect patient even who really is not very disabled at all and it is very problematic and it causes us all sorts of problems.

We really do need to focus on the deeds, not the words. We have to be impatient. We've been waiting since 1995. People tend to talk about the Equality Act of 2010, but that's rather disingenuous as the Disability Discrimination Act was pretty much rolled into that almost unchanged. So basically we've been waiting over 28 years. We now need to hold people accountable to their mission statements. UKRI has a wonderful one. Research for everyone by everyone for everyone. The problem is, is that I do not believe as a disabled researcher myself, as a wheelchair user, as a person with an energy limiting condition as a person who really struggles, really struggles with disability on a daily basis that I am part of, that everyone.

I would really emphasise again the need for us to take action now and to emphasise that perfect is the enemy of done. We tell this to our PhD students any number of times, but actually it's really important in this context. I get people being very worried that they're going to do the wrong thing. Well, currently we are doing the wrong thing. Currently we are doing the damaging thing. Currently we are risking people's lives. Let us not underestimate the importance of this. Look at the stats for suicide in our doctoral population, and you should be shocked. So we need to take action now. We take our best guess. It should be informed by the evidence. It absolutely should be consulted with those that are impacted. We absolutely put in feedback loops. But for goodness sakes, we do not need randomised control trials for rap to tell us that a ramp is better for me as a wheelchair user to get in there. I'm really glad to say that the zeitgeist is changing, I think the pandemic has taught us a lot. I think. Me too. I think Black Lives Matter. I think all of those really, big social issues have raised up the importance of everybody being responsible for the society in which they live, and the grant hold grant funders have started to recognise this. There really are improved EDI grant opportunities. I've just gained £1m of the Welcome Trust to look at research culture. There is a recognition of the need to take action to improve access and again the Welcome Trust should be congratulated on the fact that they have introduced a new bullying policy. I highly recommend you read it because everybody that does goes, oh God, we might actually do something. It penalises you directly. You will not get funded by the Welcome Trust if you have been found guilty of bullying in your team and if the university refuses to investigate it, they'll investigate it separately.

And penalise the PI and the university. We may finally be getting somewhere on change. We really do need to recognise the benefits of equitable practise. It is far better quality work that we do if we emphasise equity and I would encourage you today to be brave, be bold, step up, speak out, share your expertise, share your experiences. Bring your integrity to this conversation. We absolutely are worth it. And in the tradition of our suffragette ancestors, I incite this meeting to a rebellion.

Lindsay O’Dell: Thank you, Katherine.

So setting a very clear statement for the day. So inciting to rebellion We'll pass over to Gráinne for the first session.

Grainne O’Connor: Thank you, Lindsay. Yeah, it's Gráinne again and my role this morning is to facilitate the first part of the meeting and I'll be introducing the first three speakers of the day. And without further ad I am going to introduce Professor Nicola Martin, Professor of Social justice and inclusive Education from London South Bank University.

So I invite you, Nicola, to take control and you can move your slides.

Nicki Martin: Great. Thank. Thanks very much. That's great. And you are you showing my slides for me? And then I'm gonna move them.

Grainne O’Connor: Yes. So your slides are.

Nicki Martin: Yeah.

Speaker 1: Nicki, you should have the button at the top of your screen to take control.

Nicki Martin: OK. Yeah, that's brilliant. Yes, I'm fine with that. Am I sharing my screen then? Oh, there. There it is. Got it. Yeah, that's all great. And can you see it?

Speaker 1: You OK with that? Cool.

Grainne O’Connor: Right.

OK.

Yep, all right.

OK, fine. Thanks. Right. I'm Nicola Martin. I'm professor of social justice and inclusive education at London South Bank University. And if I'm going to live to 128, I'm middle-aged white woman with short brown hair, wearing a rainbow lanyard and sitting in a rather untidy office. Actually, I've just noticed in my background.

I'm. I'm also somebody who does not mind sitting on the naughty step and is absolutely, completely committed to advocating for research to be conducted by stakeholders, and I don't mean participatory research where people get a biscuit for joining in. I mean, for example, in the research group which I lead, we have funded research around disability, autism and so on, very social model and it's always done by disabled autistic researchers, that's the principle on the first slide. There's some resources that you might want to click on to at some point in the future.

So for the critical autism and disability studies research group that I lead all our little pots of funded research, we make absolutely certain go to properly employed, properly supported. Usually it's autistic researchers because our research is mainly around autism and barriers autistic people experience to full participation in society, and there's the nothing about us without us image on that screen and then a picture of some of my absolutely amazing and wonderful collaborators and researchers.

Influenced by a whole range of disability activists, and I've got images here of various people, particularly or I'll pick out Doctor Damien Milton who set up the participatory autism research collective when he worked with me at South Bank University with absolutely no funding whatsoever. It's still unfunded, but it is a vehicle for autistic researchers who are very often unemployed or underemployed despite having wonderful doctorates and are very often giving their labour for free, but PARC is really trying to just create some noise around the inequitable working conditions that many people experience. And on my slide next to Damien is Doctor Nick Chow that I've worked with for ages. I still work with him now. My only complaint about Nick is that he's just works me too hard because he is so on it and so fantastic.

So I think in terms of our research agenda, we're trying to keep a really close eye on what is going on that we can find funding, which will enable us to find funding for research and at the moment, the national strategy for autistic and children, young people and adults, which has priorities around health, education, employment, social care, criminal justice and community, that's what we're really looking at in terms of trying to get hold of bits of funding.

And where we're successful is we find funders who will give us small pots of money and repeat fund us for small scale initiatives, but that is never, ever ideal because it means the working conditions of our researchers are dependent on a pot of money which runs out. So in terms of sustainability of employment, it's absolutely rubbish. But, you know, this is what we're doing. I'm just being very practical. We also have now the Buckland Review, which is looking at employment of autistic people. And I'm involved in that in some kind of minor way. But the big criticism I have is that employment will mean a job.

Not necessarily a job commensurate with the fact that you have a PhD and you have absolutely every skill to work in academia. You know it's it's if you're working in B&Q stacking shelves, to me that doesn't count in terms of that being commensurate with your PhD unless that's obviously a choice. So we have various collaborators who are really important. There's an image here, an image of a woman who's Doctor Mary Docherty who set up something called Autistic Doctors International and you know, and my colleague that I just mentioned, Nick Chow, has just set up something called Autistic Researchers International that you you may be interested in. There's a picture there of Barry Sheerman who set up the Westminster Autism Commission. But you know, they do understand this agenda of autistic people breaking into research with incredible difficulty in a massively inequitable situation. And then there's a group there called Autism Voice.

And it's a group of people who are from BAME backgrounds affected by autism and it's a charity focusing on everything to do with autism and barriers to participation. But employment is one of it. And we collaborate really closely with them. There's an image there of ARC with Damien there and at the end, there are various resources you can look up which will signpost you to them. So we talk about emancipatory research and we talk about allyship. But I have really strong views about this because I think nobody can claim to be an ally themselves, I think you have to be identified as an ally by the people that you purport to have allieship with, and I would never claim that the research that happens in our research centre is emancipatory. It's a bit more than participatory, but in emancipatory research it would be the autistic researchers who've had real control over the process as the principal investigators and controlling the resources, the outputs, the way it's disseminated, etcetera, etcetera, etcetera.

We're not quite there because of the nature the short-term contracts our autistic researchers are very often not the principle investigator on paper. It's very often me because of my privileges being a professor, but they are the principal investigator in practise and I'm not claiming that's fair at all because it isn't. So participatory research. There's obviously ladders of participation and that the lowest end, it's incredibly tokenistic, which is something we completely want to avoid.

So we do not have focus groups where we bring people in, waste their time and give them a biscuit because that's morally indefensible as far as I'm concerned, we're looking at participation at the higher end, which particularly includes the employment of autistic researchers. So what we're doing in our research centre at the moment is a whole range of interdisciplinary collaborative research around education, employment, health, social care, older age mentoring. And research all framed in very much within a social model social justice framework really very influenced by the work of Bell Hooks, who talks about the idea of community and what we're really trying to do is build this community of research and everybody on this call is ever so welcome to join in on anything we do. There are no boundaries. We just basically meet once a month without an agenda and have a chat. So you know, join in if you feel like it. And I know I'm focusing on autism here, but it's not exclusive around autism.

Very congruent with the with the concept of intersectionality. So the massive strength my colleagues bring to the party are their in depth interests sometimes referred to as monotropism, but the ability to focus, apply themselves, be productive, be reliable. Is just. They're just. I have staggeringly brilliant researchers that I don't have the power to employ properly, which really, really upsets me. Challenges that that are in the way the research contracts absolutely terrible, but if you go back stages and stages, many autistic people have had disrupted education, they've had disrupted access to diagnostic labels sometimes often needed for the support, which is which, you know, could and should follow, but doesn't necessarily periods of educational exclusion, stereotyping the tyranny of low expectations and having to navigate a treacle of bureaucracy. In order to get anything done and access to work, funding for example, could be brilliant, but it's really problematic if the interface between the university and access to work is so wobbly that it means confidentiality is breached and support doesn't happen when it's in a timely manner. So access to work needs fixing. I think at the interface with the with the institution. And the reasonable adjustments, if you think about universal design, are completely simple to implement very often you ask somebody what they need, you put it in place within the context of an infrastructure which doesn't assume we're all the same, doesn't assume we can all work on campus in noisy open plan offices etcetera, etcetera. And it's just really about respect, isn't it? So we developed this framework about provision. This works for research and anything else in your life, really being the acronym being real, and we talk about reliable, empathic, anticipatory, and logical. So systems and people are reliable. They look through the eyes of a broad range of diverse people in the institution.

And they anticipate things which are potentially problematic before their problems and then fix them in advance. And communications are logical. Universities don't currently work like that, but if they did, it would actually be really nice, wouldn't it? So it works all the way through the journey through.  Doctoral study, PhD Viva and the whole employment journey around interviews and everything else. The horrible contracts, the whole thing. So that real acronym applies to every aspect of the journey. And it's also the same as universal design, isn't it really? Just operationalize it and there's just some examples and I think I'm probably running out of time. Sorry, I haven't checked some examples of the sort of research that we've been involved in with the Westminster Autism Commission, which is very much been focused on looking at obstacles to diagnosis. Employment, education, etcetera, you can look at, look up the Westminster Autism Commission at your leisure. So way forward I think is it would be really quite a good idea if joined up autism research sort of happened at the funding level because there are tiny little pots of money all over the place for people doing exactly the same thing. Real participation of autistic people. Stable employment contracts and support for organisations such as the participatory Autism Research Collective, which basically operates on the goodwill of a lot of autistic people without any funding, and that to me is also morally problematic because then people are giving off their expertise for nothing. So that's what. That's what I'd sort of call a wicked problem. And we've applied repeatedly for funding just to make park work.

But we haven't been successful with that. So, if anybody's got any ideas, you know well up for it really. And that's me. I've, I've got through my slides and there's various resources there that you can look at at your leisure if they're any use to you, Open Access resources and then references to stuff that I've talked about. So that was just a quick gallop through and I hope that was useful. Thank you.

Grainne O’Connor: Thank you very much, Nicki. That was brilliant. That's lovely. Hopefully we're gonna speak to you again when we get to our panel discussion. Yeah, and just a reminder to the delegates that they can pop a question for Nikki into the chat for our discussion later and hopefully we'll catch up again then. So we're going to move on now and I would love to introduce Doctor Emma Shepherd, who's a lecturer in sociology.

Nicki Martin: OK.

OK.

Yeah, I'll be back.

Grainne O’Connor: At the School of the School of Geography and Earth Sciences at Aberystwyth University, University in Wales. And if you're happy and ready to go. Emma, we'd love to hear from you.

Emma Sheppard: Hiya, yes, I am attempting to find the take control button.

On my.

Speaker 1: It should be the top of your window, Emma.

Emma Sheppard: Should be the top of the window.

Speaker 1: Yeah, it will say take control.

Emma Sheppard: Unfortunately I am not seeing it.

Speaker 1: OK. Well, if you just give us a prompt, then we can move your slides on, OK.

Emma Sheppard: Yeah.

Fabulous. Will do. OK, so hi. My name is Emma Sheppard. I am, as has just been said, I am a lecturer in sociology at Aberystwyth University. And if you're looking at me on the screen, I am a late 30s white woman with short pink hair, glasses and very red lipstick today. So if I can have the next slide, please. So some of my ideas are building on from I think actually what some of what Nicky's just said, particularly around ideas around universal design. But I'm also bringing in some ideas around disability justice, which is a concept and idea developed primarily in the US from disability rights organisation, such as Sins Invalid there. But is thinking about. Equitable approaches to disabled people's lives that acknowledges that that disability is not a fixed identity or embodied experience. It's something that shifts depending hugely on time and place. So what I'm thinking what to think through with my presentation today is what it means to apply these ideas of disability, justice, and universal design alongside a concept called radical kindness in academia. And so I'm building off through kind of a few papers and I will have put citations in the slides right at the end. So if you do want to go follow these up, you're very welcome to. But the first of all is Fritsch's statement that there is an ableist failure of imagination. Even when we are thinking about disability society fails to think about disability as a wanted category as not just as a positive identity but as an identity that people enjoy having that is important to them, that they would not choose to be non-disabled. So disability justice starts to think about what it means to actually want to be disabled, that disability is a pop should be a positive and desirable way of being and then academic kindness is incorporating self-care and responsibility as well as care for others. So it's thinking about care as a radical practise, but also thinking about how that integrates with our responsibility towards the other people that we share our working lives with, whether those are research participants, students, colleagues across the university.

And then thinking of as well, particularly I've been influenced quite heavily by Sarah Burton's work here in thinking about the terms and paradigms of kindness, which recognise structural inequality but also operates with an awareness of academics as being the structure in question. So thinking in in quite self-reflective and self-critical ways around what do we actually mean by being kind? OK, next slide. So I want to think a bit more about this idea of kindness, because when we think about kindness, the initial thought and quite a lot of the initial writing around kindness in the Academy was thinking about what we might think of as kind of gestures of kindness, buying a cup of coffee for an insecurely employed colleague doing a little bit of light mentoring, that kind of gestures of kindness. That may be that can't often work on a very surface level. And Burton and others have identified this as a form of cruel optimism, of kind of promising that it will get better. That never is ever ever going to be fulfilled, that it is, it is forever out of reach. But we are shaped into thinking that it could get better, that it will get better if we're just a bit nicer to each other. And Garcia Martin actually points out that kindness here in this respect is quite often combined with pity and with the removal of agency.

As they put out focusing on the recipient need by relating kindness to the domain of caregiving, implying passivity on the side of the recipient. For this reason, when the word kindness is used in the context of disability, it often requires troubling connotations. So kindness is a pitying act, and when it's combined with the cruel optimism of kindness in the Academy, it kind of it's it's that pity and oh, we should be nice to the poor disabled researcher kind of thing or we should be nice to the poor disabled PhD student. Look at them. They're trying so hard. It's. It's not kind at all. It's it's actually making our lives as disabled people much, much worse. Because not only are we having to deal with being pitied, we're also then still dealing with the structural inequalities.

So instead, when we think about academic kindness, we should be thinking about the ways in which we can push back against and undo some of the toxic individualism of neoliberalism. So thinking about how identifying problems is not about individual's lack of resilience and grit and determination and saying, well, actually this person can be as resilient as they like and as they are but without structural change they are never going to be able to succeed in the same way.  There is forever a kind of delayed success because of these structural inequalitites.

OK, next slide please.

So, as De Welde says, kindness eases this thing, but it's not a substitute for equity, fairness, or justice. So pointing to alternative and subversive approaches and Burton and Turbine have pointed to potentials of radical kindness as opposed to politeness, so politeness is buying a cup of coffee. Radical kindness is pushing back and putting strategies and working approaches in place that are designed to shape how disabled people are part of the Academy differently. OK, next slide.

So if we take a disability justice framework that which understands, and I really like this, this quote, I think it encapsulates the disability justice approach really nicely. It understands that all bodies are unique and essential that all bodies have strength and needs that must be met whether and I'm kind of adding in here when I say that this is whether or not those body, body minds are disabled or not, we know that we are powerful. Not despite the complexities of our bodies, but because of them disability. Justice holds a vision borne out of collective struggle. So within this view access becomes an act of joyful collective responsibility. We are all responsible for access. It's not what the individual puts in place with their access to work or their disabled students allowance grants.

It's down to the people who are already in that space to build that space from the very beginning as a space in which disabled people are welcome. So as Price points out, when when she's talking about care, it emerges between subjects considered to be equally valuable, and it must be participatory in nature. So it is in confrontation with individualism. We cannot take an individualistic approach which academia is very much dependent on.

As when we're still talking about access and we're talking about access, we have to think collectively and we have to think in forms of care, OK. And next slide again. So and when we're thinking about academic kindness as a form of access. It's about through making it possible to make real decisions about how and when to claim.

Having just changed jobs going through access to work is exhausting. It takes hours. It takes so many forms and discussions and explaining yourself again and again and again to different people. I can fully understand why people don't want to claim.

So it's… Imagine if we were going into a space where we didn't have to because this there was already systems in place. They were already starting to think about the built environment, for example, of the university, which was adaptive. If the built environment of the lab was already starting to think about things like flexible working or captions in meetings without a disabled person having to come in and ask for them. So I'm thinking about enabling the possibility to make real decisions about how and when to claim support, if at all, and when and how to engage with these adaptive ideas. And in particular thinking about how so many accommodations and adaptations are temporary, they're not. As Nicki actually points out, this idea, you know, the funding kind of only lasts for so long. What about if they were built? Otherwise, what about if we were.

Rather than having to go through a process of applying for reasonable adjustments and they're always unreasonable, what if those adjustments were in place already without asking? So when, for those of us who are in positions of power, how can we build in structures even if it's small structures around, for example, captions in meetings?

Or different types of chairs available in working space without asking and without having to go through and engaging with these complicated and bureaucratic systems. OK, next slide.

So I'm gonna finish there. How can we? So what I I kind of want to end with is this challenge to start to think about how we can bring these systems into place, how we could all take collective responsibility as researchers as academics at every level, but particularly those in senior levels to start building this stuff in. We know what the problems are. We just need to start actually putting the effort into fixing them. Thank you very much. I'll finish that.

Grainne O’Connor: Thank you so much, Emma. That was really great. Yeah, lots of lots of rounds of applause coming, coming up there. I can see.

OK, so we are now moving on and we will see Emma in the panel discussion shortly. But we're now going to move on to doctor Jennifer Leigh who is going to be speaking to us about ableism in academia?

Jennifer Leigh: Thank you. So I am a woman who has always been told looks younger Than I actually am. So we'll go with middle-aged, shall we? I have mostly dark hair with white streaks, and I'm wearing a kind of burgundy maroon dress with V front and I am in front of an office and there are some lovely sciencey public engagement arts behind me and are quite a long way away, so you can't see any details. So I'm going to be talking about ableism in academia. And in the context of this conference, which is all around equity, I think I want to also to think about what is equity and also what is not equitable. And just to reiterate the words that have been already said, I am using this ocean model of disability here. So this idea that we are impaired by our environment and by society as opposed to the individuals us being having a deficit in ourselves or that we are impaired or we're in any way less than human. I did spot yesterday that I've got a spelling mistake on this slide, so please do excuse that. Sometimes it can be really much easier to think about what is not equitable rather than what is equitable, and so looking at some figures that came from the TUC trade union in 2020, they said that the employment rate  of disabled people was 51.8% compared to 81.6% for non disabled people. And that seems pretty non equitable to me and it also leads to this discourse around that we've kind of heard about that if you are disabled then you should just feel grateful for having a job at all. So you know we shouldn't have the temerity to ask for any adjustments whether they're reasonable or not, because do you know what we should just be very, very grateful to have any kind of a job, particularly in this ageing context.

With cost of living crisis and everything going to ****.

Sorry, I'm not sure what swear words you have. What what, how you interpret swear words. That's probably going to be quite a lot. As you can see on this slide. And we've already talked about disability activism and Lindsay and Katherine mentioned this earlier and I wanted to kind of think about Stella Young's idea of how disability is often used as inspiration porn, which is not the same as disability porn. And you know people who are disabled are very often held up for the rest of us and then used almost as a stick to beat ourselves or other people with because, you know, if you're disabled and you can do all these things and you're super human, you're superhuman, then why aren't you doing any better?

And Stella said that disability doesn't make you exceptional, but questioning what you know about it does. And she said that the quote, the only disability in life is a bad attitude is bullshit, because no amount of smiling at a flight of stairs has ever made it turn into a ramp, and no amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all of those books into Braille. And like Katherine, she was really advocating for us all to be more activist. We have to do things we have to make a change.

So again, how many people are disabled? I just took the most recent statistics from the Office for National Statistics in the UK and they say that around 35% of the population aged 16 to 64, the working population have a long term health condition with 22% classed disabled. And this is really interesting that they've used this term classed because quite often we talk about declaring or disclosing a disability like it's something that we have to hide like a criminal record or something that is shameful.

And what is really interesting about these figures is how much they've gone up since COVID first came in 2020. It used to be around 25%, and now it's up to 35%. And this is probably due to the impact of mental health, but also long COVID and the fact that if because so many people didn't have as much access to healthcare that their conditions that were already existing got worse. In higher education, and this has already been alluded to, there are much, much fewer. So in 2018 there were 4% of academic staff who disclosed (there's that a disability or chronic illness. More recently, it may be pushing 5%, but it's really not increased that much. And when we look at applications for research funding,  it's really shocking. So again in 2018, it was less than 1% of all applications not funding, but applications went to people who were disabled from the UKRI and look for more recent figures doesn't seem to have improved and TigerINSTEMM say that only 25% of disabled researchers even apply for funding. And that's across all disciplines. And the average success rate and award amount are consistently lower for disabled researchers than non disabled researchers. Again, that does not seem equitable to me.

UCU also talk about the pay gap. There is a disability pay gap just as there is a gender pay gap in a race pay gap and disability is something just like gender, just like race that we have to look at intersectionally because you if you are a black or brown marginalised ethnic academic you are disabled and you're from a minority gender you're truly screwed.

It's not the same across all the disciplines, so in 2021, the all party parliamentary group on diversity and inclusion in STEM said that the STEM workforce is less diverse in the wider workforce. So if we're already kind of establishing that we're not really that diverse in higher education particularly, we know that in STEM and science it's a lot worse and we know that fewer STEM staff disclosed than non STEM staff and there is a correlation between how the the gender balance that you have in a discipline and the rate of disclosure, so disciplines where there is a  better gender balance. You're more likely to disclose or declare a disability than in those that aren't. So, on the slide, it says agriculture have 2.3% disclosure rates and 5.3% in medicine nearly twice as much. And there's also a difference depending on career stage and gender. So women are more likely to disclose and you're more likely to find disabled people at the most precarious points of their career. And the most senior points, and less so for those early career or mid career researchers.  In science in particular, it's a really inaccessible culture, so the Royal Society did a report in 2020 and they quoted one early career chemist saying "I simply cannot work the long hours that I did before I was unwell. This makes it extremely challenging to be as productive as I used to be, and I'm certain that this will affect my ability to publish and keep up with my contemporaries, and so I suspect that this will affect how I'm compared to others on applying for a permanent academic role and grants," which chimes with what TigerandSTEMM found that disabled researchers just not applying for grants because they don't think they'll get anywhere.

And this is this is the same as findings that I had in a study that was funded by the Royal Society of Chemistry, which is looking at accessible labs, and have focus groups with researchers from all across the UK and in New Zealand and America and Australia. And staff reported being stigmatised, challenged and questioned and some were even told not even to pursue a career in academia because they would just fail because of their disability.  One PhD student told me Ivory Tower, ableism is not accepting. It's not accepting of illnesses and there's a culture of not taking holidays or sick leave.

A postdoctoral researcher said that they stayed at the same university because of the support they knew they could get, but that there would be consequences for that and the senior clinical scientist said that they would really struggle to stay studying in a lab. Now things have changed and got so much worse. And this kind of ties into the idea of the ideal academic, and this slide draws on work from Kate Sang on disability and academic careers, where there's an ideal academic is portrayed as some hyper productive.

BSL Interpreter - (Njal) (Guest): I'm sorry, my apologies. You're speaking so, so fast and really struggling to keep up. What he said. I'm trying, but I am really struggling. Could you just slow down just a little bit, please? Thank you.

Jennifer Leigh: I'm so sorry. I do. I just talk really quickly. I will try and slow down. And the ideal academic from Kate Sang, who talks about they would ideally not have a body at all. They can work independently, they have no caring responsibilities. God forbid we should have a life outside academia.  And they attract research funding, and they're basically just perfect, but have no needs.

So you might think that the probability of getting equity for disabled researchers is about as likely as seeing a pig fly over a Unicorn!

However, I wanted to very quickly see I've got to talk quickly. I've got a lot to get through. I'm thinking about what we can do. Three things. One is to make disability ordinary. So this is a paper that came out of the study that was funded by the RSC.

Looking about how we need to embed inclusivity into the future of teaching and learning, we need to use inclusive research approaches. This is my shameless self promotion slide talking about the research approach that I use which is around embodied inquiry.

And this the last one is the book that is coming out later this year, which talks about how when we use creative methods, we have to be really careful because particularly when we're working with groups who might be more vulnerable that they can border on to different processes like therapy and education, most likely therapy where you can cause harm inadvertently. And we need to build networks and communities. So as part of the focus groups, I ask people, what would you say to to yourself in in that situation, if you could talk to yourself much earlier. And they all said find your people, a lot of them did that through Twitter, which is not really so great anymore. But the National Association for Disabled Staff Networks is an incredible support to lots of people I know. Hamid Haroon is speaking later.

And the women in Supremolecular Chemistry Network is an example of a community led area specific network that embeds EDI and we have published within the chemistry community setting out our ethos of calling in support as opposed to calling out bad behaviour.

We have publications around experiences through COVID-19. And we're also trying to raise awareness and get people talking about these issues. So for example, there was a whole comment, a series of comment pieces on family life that was in Nature Reviews Chemistry and those received over 3,000,000 views on Twitter. And a lot of this work is brought together in this book, which is available on Open Access Women in Supramolecular Chemistry, Collectively Crafting the Rhythms of our work and lives instead. And a lot of the way that we did this work because of the embodied inquiry, we wanted to highlight lived experiences and invoke an emotional response to the stories.  That people were telling so rather than sharing participants' words and risking the dangers of whistle blowing and harming their careers. We created fictional vignettes that brought together findings from a research project that included a survey, collaborative auto ethnography, and work with research groups, and I want to end by reading you one of those vignettes that you'll find in the book, which is of Paula, who is an early career researcher.

Until two months ago, I was the only woman in my department.  There doesn't ever seem to have been more than one woman here at a time. I'm not entirely sure why. I'd like to think that it isn't because they just want to have a token, but it does sometimes feel like that. You know, one woman, one person of colour. Actually, I wish there was one person of colour. It's not great optics that our students are diverse, but the faculty looks all white. I get asked to sit on a lot of committees, hiring committees, ones where the department needs to be represented. And I never like to say no because I know that the department will have to decide in the next couple of years whether they're going to make me permanent and promote me. I need to have good relationships with them so that they ask me to collaborate on projects with them, and if I say no then they might say I haven't given enough service to the department or I haven't been collegial enough and I might miss out on those opportunities. But now that I think about it, there haven't been that many opportunities coming my way from the department. Most of the collaborative work I do has been as a result of my own networks outside the university. I do worry, though, that it takes me all away from my research.  I don't see how the work of this kind is getting recognition when it comes to grant applications or promotions.

It doesn't seem to matter as much as papers and funding. Some of my friends told me that I should just say no more often and put myself first, but instead I've been getting up at 5:00 AM just so I have a couple of hours to write and haven't really published as much as I'd like to. Yet I'm only beginning in my career in developing my group. I don't want to become known as that woman if I keep banging on about it being unfair. I saw that happen to a friend of mine when I was a PhD student. He was in a wheelchair and had to fight for everything. He wasn't even lab based, so you'd think it would be easy enough to get a computer with the right keyboard and for him to be able to get into the postgraduate office.

But still he became a bit of an advocate for disability rights, and I think that's one reason why he couldn't get a postdoc position. He left science in the end, and I don't know what he's up to now. I find that a lot of our women students want to work with me or talk to me. They haven't met many other women in the field, and they want my input or advice. They see me as a role model, which is lovely, but it also takes away time from my own research. Still, at least I haven't experienced any direct discrimination. Some of the things I've heard, particularly at conferences. Conferences are good when there are other women about, it can feel a bit intimidating when you're on your own.

These days I have a little group of others that I tend to stick with. Some of the things they've told me - senior professors asking them what underwear they have on, being told that they shouldn't be in the lab because their hands are too small to hold solvent bottles, or their wombs will sink because women aren't meant to stand up at a fume hood. It didn't seem to occur to that Prof that women also have to stand up all day in the kitchen. I don't think they're trying to be sexist, they just don't realise that we face a barrage of little comments and innuendos all the time and it gets tiring.

And this is an example of the kind of work that I do.

So we're looking together with the National Stem Action Group to do the same around disability to really highlight lived experiences and the impact of having adjustments or things being made accessible or kind. That's as Emma Shepherd said just before me. So thank you so much. It's been an absolute pleasure.

Grainne O’Connor: Oh, thank you so much, Jennifer. That was wonderful.

As you say, there's an awful lot to talk about and to try and get it in there on the time and hopefully we're going to have a little bit more time now to to discuss that as part of a panel. So what I'm going to do is I'm going to ask our three speakers to come back if they can.

And I'm going to remind people we're very happy to take any questions in the chat for anybody who uses BSL. If they'd like to raise their hand in the chat, then we will turn their cameras back on. Thank you for interpreters for keeping up so brilliantly. OK, so I'm just going to kick off the discussion with the question. Obviously, what we've heard from all of you this morning is yes, academia is essentially ableist, but really because today is all about tangible, constructive ways forward. I'm wondering what the panel's thoughts are on how we can radically and productively and pragmatically, challenge ableism and academia.

Mm hmm.

Who do you want to kick off?

Why do we come to you, Nicki? Because you've had a bit of a rest and.

Nicki Martin: OK.

Oh yeah. OK.

Grainne O’Connor: Then we'll work our way round.

Nicki Martin: Right. Well, I would say academics respond to research. Therefore, research about ableism in academia is of fundamental importance.

But we have to ensure that our senior leadership understand what ableism in academia is, what their responsibilities are in relation to the Equality Act what universal design for learning is, and systemically across the sector embed, proper processes and proper systems which actually in a way that they should be addressing all the other protected characteristics, intersectionality and everything else. But we have very limited role models of disabled academics in employment particularly in senior employment. And it's not without risk of I'm very out about my disability and my experience, and I'm a professor, I claim my privilege. I don't know how I got here.

But my confidentiality has been compromised all over the institution millions of times, and that's common across the sector. People will not talk about their disability or their requirements or anything else. If it looks like none of the services are going to be any use to them and it's going to be detrimental. I mean, I feel that I have to be out and proud, but I just find it massively frustrating because I am sure that I have not got particular jobs because I've talked about impairment effects and reasonable adjustments I need an interview and not been appointed because they thought all that sounds like she's going to be completely incompetent, which clearly I'm not. So I think we have to be quite sort of brave and also supportive of each other as a community, but it's almost like today we're in our little bubble, aren't we? There are people in the wider community with very, very discriminatory, ables it attitudes and unconscious biases that they don't even recognise. So I don't know if I'm ... Sorry. I've just banged on a bit there, but that's what I think.

Grainne O’Connor: Oh, no. Brilliant. Thank you. Nicki. I I was wondering actually, if I could come to Jennifer because you've certainly talked there Nicky about the unconscious bias, and I was wondering if Jennifer might have a comment looking at, I know you've done some work on with colleagues on recruitment of academics with with disabilities and on a sort of a checklist, and I was wondering if you had any comments to make following on from what Nicki has said.

Jennifer Leigh: I mean, I think that one of the one of the biggest things is to raise awareness. So often in higher education, disability is seen as something that that students have. So you know, it's the students that are disabled and we don't think that actually the staff might be disabled as well. So it's almost kind of this unconscious thing that if you're disabled then then of course, you're not an academic. You know - you wouldn't be. And that can be like indicated in occupational health questionnaires, for example, or even you know the assumptions that people make about us and how we're employed. I think one of the biggest things that we need to do to radically challenge ableism is to draw attention to why it's important and actually to say, well, hang on, it's not just about students.

Conversely, in the lab paper we said (which was about students), we said that if we want students to feel as though they belong, we need to have staff feel as though they belong too, so that students can see disabled people, teaching them and being part of that ecosystem. So it's not just about getting through an undergraduate degree, it's about having a career.  Having a way to progress and to feel as though you can thrive rather than just survive. So I think it's about how we can connect with people rather than alienate them. So it's not about always telling them what they're doing wrong, it's about how they can. The small things they can do that can make a huge difference. You know, for example, rather than saying, let's meet in a cafe, but where would you like to meet? Because you might have hearing issues. You might have sensory processing issues which would make being in a cafe kind of more difficult, more difficult. So it's about those little everyday things that you can do to make people feel more comfortable and more able to basically to be part of academia without having to disclose I'm, you know, I don't think anyone should ever have to disclose unless they want to. And I generally don't disclose anything at this kind of event.

Because it's not anyone's business kind of thing. So it's like this thing. We need role models. But on the other hand, no one should feel that they have to act to be a role model for people. So it's a double edged sword, I think. But a lot of it is about how we connect with people and how we can really show.

Nicki Martin: Yes.

Jennifer Leigh: Why this is important and get them to emotionally respond so that they will make change.

Nicki Martin: Mm hmm.

Grainne O’Connor: Absolutely. Thank you. And what you've have said there, Jennifer, about disclosing and not disclosing obviously for people with physical impairments.

They're out and proud or not. It's it's visible to everybody else, but perhaps Emma, you might maybe want to come in and talk a little bit about maybe the invisible disabilities and how we can we can make life better in academia for people with invisible impairments.

Emma Sheppard: Yeah, I wanted to jump off what Jennifer was saying about raising awareness, because I do agree that awareness is great. We should. We should be raising it. But I also think we need to think about what's next. Once we're aware? Cool. Then what do we do? So it's for me, I I kind of tend to think about in terms of putting concrete things in place, one of the things that I would and this is kind of again a very general what I would love to see is the normalising of discussions around access needs that don't assume that those are only for out without disabled people. So for example, when a new employee comes into the space, we can provide X&Y. Do you have any other access needs that you think we could meet?

Before disclosure occurs so that (a) it's thinking about, you know, everyone has access needs. It might be about childcare or elder care. It might just be around a temporary and passing mental health issue. It might just be that they do have a disability, but they're very unsure of how to handle it. We can open up these conversations and make them Culpable. It's not a very good word, but again thinking and as well what Nicki was saying for people within the Academy, we can have a degree of privilege. We can be in privileged positions, but also so can non disabled. People need to take responsibility for some of this stuff as well, it shouldn't be. It's. It's not up to disabled people to do all the work. It really has to be about in the same way as you know, gender equity has to be about people who have male masculine privilege doing, you know, doing the work as well. Non disabled people have to do the work for disability equity. Yeah, we can have systemic change, making it possible to talk about invisible disability and kind of yeah, it's. I love seeing signs on bathrooms everywhere. That says don't assume that every disability is visible. These can be really small changes. But also trying not to think in terms of visible and invisible disabilities, because so often invisible disabilities are just not disabilities that you are expecting to see. They don't fit the normative frame that we have around what disability looks like.

I almost kind of want to put that in the bin and say we just talked about disability.

And go from there. But yeah, I think it's for me. It's very much about thinking about that collective responsibility.

Grainne O’Connor: Alright, thank you. I was wondering, we've been talking a little bit about people working in the Academy, I was wondering if we bring Nicki back in just to talk a little bit about some of your work in terms of going earlier on in the process and actually looking at adjustments in terms of the Viva in terms the part, the pipeline and actually.

Nicki Martin: Yeah.

Grainne O’Connor: Setting the standard and modelling for students who who have not yet even got into the Academy that they are welcome and that they will be.

Nicki Martin: Yeah, absolutely. When I disappear from this call, actually, I've got one of my students, an autistic doctoral student. Her Viva is today and the lights are quite low in my office because when she comes to the campus and she doesn't know what time she's going to arrive, she's coming into this office and then I'm going to go then because it's just a completely ordinary, reasonable adjustment. She doesn't want to be hanging about somewhere where people are going to bother her because she's nervous. It's really simple.

So the panel are aware that the candidate is autistic, it's completely obvious all through the thesis because it's about being an autistic mother of autistic children. But they're aware the chair is aware the arrangements have been made in advance. She knows what's going to happen. All those adjustments to the Viva, completely breathtakingly simple, and would benefit any doctoral candidate because you know how horrendous it is any of you who have had a Viva will know how nerve racking it is. So those arrangements benefit everybody. So the principle really of universal design is really important throughout the whole student journey from pre entry to post exit, but it doesn't just apply to students or disabled students. It applies to the whole of the university community and the university community includes people who haven't even got to first base would like to be in that community but maybe didn't get GCSE English and maths and can't even go on an access course because the fact that they were not particularly literate at 16 still disadvantages them at 36, even though they're managing some kind of restaurant or something. So I think universal design for learning from pre entry to post exit everybody's responsibility and understanding of intersectionality role models at senior levels. Senior leadership buy in all that sort of thing, but not making things into a three act drama because the message that academics like to hear is: if you do this, it benefits you, it makes your job easier and it because it benefits all the students. So embedded reasonable adjustment, not not reasonable adjustments embedded inclusive practice around things like captioning information in advance, in accessible formats, etc, etc - I've completely forgotten what you asked me now. So would you like to ask me the question again or tell me to stop rambling on? Either way, it's fine.

Grainne O’Connor: You're definitely not rambling. Yeah, I just think you're thinking about certainly the work you've done in the past on those adjustments for Vivas.

Nicki Martin: Yeah.

Grainne O’Connor: Making those normal so that people understand that they are welcome. They're welcome in the.

Nicki Martin: Yeah.

Nicki Martin: And the paper that I wrote with Nick Chown about Vivas, it's the most downloaded and most cited paper that either of us have ever had because nobody seems to have written much about it. There've been a few since. It's a little bit old, but it's just ordinary. You don't have to be a certain way in the Viva. You don't have to make eye contact with all the examiners and all the examiners don't have to assume you won't make eye contact because you're autistic, because that's not necessarily a thing either. So in either direction. So I think training people who are going to examine doctorates is incredibly important, that they have a wider understanding of how people might relate to the doctoral Viva and the doctoral Viva doesn't just have to be like it, like it's been for many of us already. It can be. You don't have to pile in the stress. And another thing with doctoral Viva, there's so much ridiculous bureaucracy around them which actually many students stumble over before they get to the Viva because they have to upload this in this portal. Put this somewhere else, you know, jump through several hoops, many of which are on fire when they're already stressed. So those sort of let's help you navigate through this ridiculous nonsense. And while we're doing it, let's examine this ridiculous nonsense and make it make sense through a checklist so you can tick off what you've done. And it's even things like, can I look at the room in advance?

So you don't have to ask that question because we say, would you like to look at the room in advance? You know we sort of it's anticipatory, isn't it? It just goes back to the real thing reliable, empathic, anticipatory, and logical. So all the systems are reliable. So your thesis isn't too big to upload or something like that. Empathic as in we all know you're going to be hideously stressed out by this. So how can we make it easier? Anticipatory anticipate that the technology might not work and this person might want to show a present presentation.

So go and check and logical communication and one of the bits of logical communication is we always say with our doctoral students, the Viva is the penultimate stage. Everybody gets things to do after the Viva. That's usual because very often people will feel they've failed, particularly if they get major modifications. So we say that's usual. You will definitely get modifications and if they don't on the rare occasions we don't say well that was unusual.

But you know, just preparing people so they don't walk out feeling they've failed when they've done really well and also limiting time, the Vivas can't go on all day, they have to stop after a period of time for either a break or they just have to stop, you know. And I think examiners need to leave their ego at the front door, frankly, doesn't matter what they did in their thesis. So what you're not, we're not. It's not about you love. You know. It's that, isn't it? So I think to just come in come in with an open mind doesn't have to be perfect doctoral thesis - it's not the Nobel Prize for literature. It's got to be good enough and this is where autistic people often really struggle with good enough. So it's like wrestling this brilliant thesis off somebody because they always think it could be better. That's it.

Grainne O’Connor: Oh, thank you.

Nicki Martin: Oh, I'm also I'm looking at this comment in the chat. I think that's absolutely appalling. I'm really sorry to hear that, Nicola.

Grainne O’Connor: And do you want to just read out that comment just for everybody in case they haven't seen it?

Nicki Martin: Yeah, sure.

Yeah.  Barbara Sandland has produced a paper with Nick Chan, which is absolutely great, by the way. That's in the chat. But the comment just above about somebody who's examiner knew they were autistic. But we're absolutely horrible. And the result was that the doctoral candidate spent two days in bed recovering afterwards because it was such a vile experience. And that should not have happened. And I also think that we should give feedback on the Viva experience. We've just had a Viva, actually it was a bit horrible and as supervisors we gave feedback to our doctoral Academy and the fact that Viva was pretty horrible. So yeah, I think I think there should be a system systemic feedback loop about the Viva experience actually.

Grainne O’Connor: Very useful. Thank you so much for that. And I was wondering if the rest of the panel had any thoughts. We know that disclosure particularly when people are in the Academy declines with seniority and part of the arguments are that there is a lack of leadership in terms of modelling disability for senior leaders etcetera. And I was wondering if anybody wanted to give some thoughts on that.

Or not at the moment.

Nicki Martin: I don't mind, I just don't want to jump in if Emma or Jennifer want to say something. Well, (a) disclosure is an absolutely revolting word because it implies you've got a dirty secret. It should be share, inform, tell. Nobody is going to give away their information if they don't know what's going to be done with it. And confidentiality can be breached a lot. And this is this is my favourite quote in relation to my own confidentiality. I hope you don't mind but I just told.

Grainne O’Connor: Go ahead.

Nicki Martin: I've just told XY and Z so or I've just like pinged this e-mail into this HR help desk generic e-mail. You know, that sort of thing. People need to know (a) what's going to happen with the information and (b) see that there are visible reasons for sharing that information because they will translate into something useful happening which is useful to you and senior leaders. I know quite a lot of disabled senior leaders who probably have not shared that information beyond the closed communities that we have set up ourselves like, you know, the disabled, staff networks and so on because they feel it carries an ontological risk and they are correct, it does because of ablest attitudes of people thinking. "It's amazing they've got that far with that disability". You know there's people have got, there's lots of prejudice about and we have to address the prejudice to get the people feeling confident to share their information.

It applies to other protected characteristics as well, like people will not let on that they've got to go home because they've got caring responsibilities, for example, because there's this culture of presenteeism, you know, not taking your holidays all that silly nonsense. So there's a systemic culture of the worker as the sort of worker robot who has no personal life whatsoever, which you know, the thing about work life balance is what needs to be addressed, and academia is pretty toxic at the moment in terms of work, life balance.

So I we're on strike, isn't it?

Jennifer Leigh: If I can add in there, I think there's also the fear of how a disclosure is going to be used against you in future. So for example, you might disclose you, you have ADHD and then get told Oh well you maybe you just need to spend more time reading emails and make sure you don't make silly mistakes.

It's, it's that kind of, you know, but people can use this can weaponize things against you. So I do think there needs to be more awareness and more openness, but I don't think anyone should feel pressured into disclosing anything, partly because it can be a real journey to accept that you are disabled. I mean, I always talk about. Nicki - I use exactly the same kind of thing around disclosure and declaration because it is as though it's something shameful, but it can also be a journey to accept that you're disabled or you're chronically ill, for example, because you don't start off being chronically ill you just start off being ill. So there's, you know, you can't disclose or share or inform anything until you've accepted it yourself so.

I mean the other point of that is in terms of line management in academia, there are often issues. People are promoted often because of their research rather than because of their ability to manage people and not necessarily trained how to manage people. So the awareness that people have.

Kenny in the chat has put that my boss totally switched off very shortly after my ADHD disclosure. I would say I'd be wary of saying that again, but I have no filter when it comes to myself. Prolific over sharing. Well, that's classic ADHD. But, but I think we have to be really aware of the issues around management and people management that there are in academia, which can be really intensified when you're disabled.

Grainne O’Connor: Lovely. Thank you.

Nicki Martin: I think.

Can I just say occupational health needs to be part of this mix and they need to be doing their job differently very often.

Grainne O’Connor: Oh, thank you. Thank you. Nicki, I'm gonna come to Sharron. Sharron has got some questions from the chat.

Sharron Jenkins: Hi.  Got a question for Emma. And it's from Marion and Marion said she really enjoyed your talk. I'm a French researcher in sociology and I'm partially blind and my work is on how blind and partially blind and or deaf and partially deaf researchers’ experiences teach us about work, academia and institutions.

Here's the question, do you have any concrete example when access is beneficial to non disabled people? Or not yet disabled.

It's for you, Emma.

Emma Sheppard: Yeah, I think that's a really good question. And there are lots of examples. I'm the ones I'm immediately thinking of are not necessarily in academic spaces, although they could be one of the kind of classic ones is curb cuts, where pay usually at the corner of pavements when people need to cross the road. The kind of lowered edge that is really makes it wheelchair accessible. We would otherwise limited mobility because they're not having to make a big step up. It's also great for people who are using prams or shopping trolleys or people with small children. That's a kind of almost a classic one that's been around for a longer one of the ones I like to talk about when I'm thinking about teaching is captioning.

There is, I can't remember the exact statistics. You're very welcome to e-mail me and I will chase it down. But young people, people under the age of about 18-25 are using captions, even though they are not deaf or hard of hearing or hearing impaired, at a massive rate compared to people of an older generations.

It's an adaptive tool. It's an adaptive technology, but they find it useful in a whole range of ways, and their reasons are not necessarily fully thought out by themselves, but evidently captions are hugely beneficial to a range of people and it may or may not be for disability reasons. In terms of when Nicki was talking about questions in advance. That's usually useful for everybody. Whether that's a Viva or an interview, I do it in teaching when I've got a seminar coming up, I tell my students what the initial questions are going to be because again, it reduces that anxiety. And even if they're not anxious or autistic or they don't have any, you know, it just helps a little bit of focus. So there's huge numbers of examples. These examples, a lot of them are quite small. They're not necessarily like these big sweeping changes. They're just little everyday things that are just really useful for lots of different people, for lots of different reasons.

Grainne O’Connor: Oh.

Sharron Jenkins: Thanks Emma.

Grainne O’Connor: Do we have more questions, Sharron?

Sharron Jenkins: Yes, we do. We've got a question from an anonymous guest today, and this one's for Nicki. And the guest says you're on point. As always, the only reason to be out and proud in academia is to help colleagues. And it makes it very hard when then to not be reduced to a protected characteristic. Do you have any practical ideas as to what training for leaders looks like?

Nicki Martin: Oh yeah. Now that's really interesting. I think that training for leaders needs to focus on identity, unconscious bias and translating any sort of well, they call it equality training. It should be equity training, but it's not, is it, you know, translating any of that into right "what are you going to do now in practical terms and training," should be revisited a few months later with. "Well. Well, did you do that then? And how did that work out for you?" So it almost translates into some kind of action research cycle. So I also feel very strongly training must be delivered by people with the lived experience which is relevant to that training and this whole concept of intersectionality is absolutely key.   You can't boil anybody's identity down to one word anyway, and I think people involved in training where they can relate it right back to themselves, you know, they might think oh, actually, you know, I actually do experience chronic pain or. Yeah, it's really difficult for me because I'm looking after my dad, you know, and I have to rush away in the evening and all that sort of thing. So it has to be relatable. But it also has to be practical and embedding it into some sort of strategy and I think.

Equality impact assessment needs to get off the page and into real life. I think that's really good. You can you can talk about anything and then say let's look at the equality impacts of this scenario and this scenario and embed that into the culture of the institution.I don't know if that helps?

Sharron Jenkins: Thank you.

Jennifer Leigh: If I can add to that, I think training also needs to include the opportunity to ask questions so that they can, you know, in a way that they won't be penalised for going. But why isn't it OK when I do this? So there need to be an environment where you can have open conversations and coming back to my point about academics as line managers, I think it needs to be research informed because if you give academics a whole load of woolly rubbish, they won't pay attention.

Nicki Martin: Yeah, please.

Definitely.

Yeah.

Yeah.

Jennifer Leigh: So it needs to be based. It needs to be evidence based exactly as Nikki says. It needs to be. People with lived experience, but we also need to be aware that lived experience of one disability doesn't mean that you can speak for all disabled people. And there was a comment in the chat about there was a thread in the chat about captions and how helpful some people find them, but also how overwhelming other people find them. So it's we can't say one thing fits everybody, but I think training for managers needs to embed this and so often it seems to be outsourced to Oh well, you can do a Moodle module on it and it's an online thing.

Rather than actually putting people in a room where they can hear and discuss and and question OK, what can I do and how does this fit the way that I operate with my line managers? You know it because we all have different styles and you have to find a way that works for you but also is enablist.

Nicki Martin: Totally agree.

And academics certainly respond to research, and if research is conducted by people with, with the identity that is the focus of the training, then it has more resonance. It makes more sense, doesn't it? Yeah, definitely. And I agree about the point about language as well, because sometimes people feel very constrained, for example, around use of pronouns, things like that. People feel really worried, don't they, that they might get it wrong.

Or disabled people versus people with disabilities. And if you pick people up all the time in a way that makes them feel they can't ask questions, then you close down the conversation, don't you?

Sharron Jenkins: Thank you both for that. We do have another question from an anonymous guest and the question is what part can disabled staff networks play in this, the one at my institution is fairly new and still figuring out its role, but there seems to be a tension between being in a safe place and supportive network to meet other disabled people and the kind of advocacy for disabled people within the institution that would be necessary to make change. Plus the fact that everyone in the disabled network is disabled makes sustained activity difficult due to fatigue etcetera. So I think they're asking how the networks can help.

Nicki Martin: Yeah.

Jennifer Leigh: I'm happy to start this one off, - I'm the Co chair of our staff disability network and I think there are lots of things, lots of ways that they can help. I would advocate anyone, if you've got a staff disability network that's just starting out, do get in touch with NADSN, the National Association for Disabled Staff Networks, they have regular meetings. And they're really supportive. Part of it can be finding your community and a way that works for you. I think ideally you have a staff disability network that feeds into policies and gets to review practices, feeds into a equality impact assessments which was mentioned earlier in the chat thread. I think one of the big issues around starting disability networks is how they're resourced. So for example at Kent ours when I first joined just used to be a place where people would moan and then as a result of a restructure there was we had an access to feed into high level university level committees. However, we aren't given any time allocation to do that. So for the last few months, we've actually stepped back from all university level committees and saying do you know what, we cannot sit on the People Committee and the well-being committee and the Mental Health Committee and the the, you know, all of the EDI Strategy group and the EDI Committee because they're all two or three hour meetings plus prep. And it's not in our workload, not all of us are full time, not all of us are academics, some of professional services.

And that does mean that we then don't have a voice at that table, but I think it's a bit like going on strike if you want us to be represented, you have to allow us to be there and and give us the time to do it. And it's a bit like many EDI grants I spoke earlier about the Royal Society chemistry, who do an awful lot of work in this space.

But they don't allow you to have buyout for your time. So everything that you do is over and above. And I think a lot of grants work like that. So yes, it's an EDI grant, but it's often the people who are marginalised who are doing the work and then they're expected to do it over and above their day job.

Whilst still meeting all of those hyper productive ideal academic ideals, if you want to progress, I can see Emma and Nicki nodding. This is obviously something that is hitting home, so it's kind of how much work do you want to load on to the same people. So I think use it as you need to use it and how it's resourced for your university, you can't expect everything from people without any resource.

Grainne O’Connor: Oh, thank you very much. I'd just like to come in there and ask for Catherine. Catherine Pestano. Catherine, do you have your hand up? We're just wondering if you would like to sign your question or pop it in the chat.

Catherine Pestano: Oh yeah, thanks. I can't come on to the camera. Doesn't seem to be enabled, just to say.

I've been like, it feels like when people say they're going to invite, OH in, it doesn't feel like a friendly gesture. It feels like - my past perception of them as a senior manager and as a trade unionist is that they gun for the employers. So is there advice on how to handle things like that? It's my first time having that over me so I don't know if people have tips or like, don't tell them anything, or I don't know what to say really, but I'm slightly concerned. Yeah.

Nicki Martin: Emma?

Emma Sheppard: Sorry, I had to find that mute button. Yeah, I my tips always involves.(a) write down what you want. Like write down what you want the outcome to be.

Don't like go in with your absolute dream list, but have in mind like the stuff that you kind of ant . But yeah, what do you want out of occupational health? And don't be afraid to. So occupational health produces report usually, and you have to approve it before it goes further onwards. Don't be afraid to push back on it.  Occupational health isn't necessarily trained in disability, and yes, as Nicki said, take take a trusted person with you.

It doesn't have to be a union Rep Union reps. Reps can be great on their stuff. They can be not so great on their stuff. So Yeah, taking a trusted colleague with you is really, really useful. I like writing it down because it helps how my brain works, and when I get stressed, I forget stuff.  I tend to view them as a necessary evil, but yes, I I don't go in trusting them and I wouldn't advise anyone to go in expecting great things. But some occupational health people can be brilliant. Yeah, there's  a huge range of things, but yeah, go in thinking about the practical stuff that you want to happen. That's always the best one. But anyway, Nicki.

Nicki Martin: Oh, I haven't really got anything to add. I absolutely think that. But I also think any of these sort of discussions translating into some kind of arrangements need to be revisited, you know, to see if they're actually working. And for example, I returned to work having had cancer and there was all this. Oh, yeah, all these arrangements, none of them actually happened at all whatsoever. But had there been a follow up, perhaps it would have been easier to say to, you know, to advocate for myself a bit more and say, actually, I'm not supposed to be doing that. So like build it in strategically, don't leave it to chance because it'll never. It'll might. It'll only work if you if you sort of go on and on and on about it, and then you're positioned as the awkward person, which is difficult in itself.

Catherine Pestano: Thank you, my only experience of it so far was being blocked from getting a job because I had a historical industrial injury and I had to threaten to sue them and at that point they backed down. It was like you haven't even met me and haven't even asked for any reasonable adjustments. What's your problem?

Nicki Martin: Yeah.

Yeah.

Yeah, yeah, yeah.

Catherine Pestano: So yeah, and so now I'm like, I've been telling you exactly what I need for the last year, if you need. If you were of a mind to help me, you could have done it. You don't need occupational health guidance. I know more than they do. So that's my anxiety. But thank you so much for your solidarity and feedback. Thanks.

Grainne O’Connor: OK. We are just about coming up to wrapping up time. We're going to be having a break in little bit under five minutes. Is there any final parting comments that any of the panel would like to make?

Nicki Martin: I just like to say solidarity, really and any if anybody wants to join in on anything that we do at South Bank, our critical autism and disability studies Research Group no longer a research group, but we just still meet in anyway and we just meet once a month on teams with no agenda. We just have a chat and a lot of it is very, very related to what we've been talking about here. So don't expect anything apart from turn up and meet people, but you're all really welcome. Just e-mail me, I'll put my e-mail in the chat.

Jennifer Leigh: I'd I think I'd like to echo Hamid words that he's written in the chats "nothing about us without us." You know, we have to. We're stronger when we speak together. I think so much work around disabilities of. "Let's see how the scale of the problem." But actually, do you know what we know? It's a big problem. Can we just do something and can we do it differently? Because we need to do things differently because it's not been working how it is and I'll probably give a shoutout to not only Nelson but also the Nelson STEM Action Group which meet monthly NADSN meet weekly. But I'm sure Hamid will talk about that later.

Nicki Martin: Yeah.

Grainne O’Connor: Well, thank you to everybody on the panel and for all the brilliant questions that people put in the chat as well. What we're going to do from 10:45 to 11:15, we're going to have a comfort break. So we can all.

Grainne O’Connor: Relax and decompress a little bit and stretch our legs and we're gonna meet back for the next part of the conference. I'm sure what we'll find is that a lot of what you've spoken about this morning as a panel will be reiterated throughout the day. And you're right, solidarity is definitely the buzzword for the day and the fact that we're going to try and have some tangible outcomes from all of our discussions today.

Grainne O’Connor: Thank you everybody.

Nicki Martin: Thank you.

Rachael Luck: Yeah.

Welcome to the second session of this conference. I'm Rachael Luck, the facilitator for this session and the theme of this section of the conference is Challenges in Doing Practical Research. So whether these are structural issues in terms of access to labs building and campuses.

Also, sort of we all know that environments electronic, digital environments are part of what affects our accessibility and other issues as well. I'm delighted to introduce three speakers for this session, so the first speaker will be Katherine Deane who we've already met who is an associate professor at The University of East Anglia and also has been an Access Advisor to The Houses of Parliament? And many other places. Our second speaker will be Nicole Brown, who is an associate professor at University College London with several books, which I hope will speak about. And then our third presenter will be Hamid Haroon, who is a researcher in physics in MRI. And also most notably chair of NADSN and he will be able to talk about this. So, Katherine, I'd like to invite you to take control of the slide deck and then to present.

Katherine Deane: Thank you so much and it is wonderful to be here today talking about the challenges of doing practical research. Now I addressed this recently by doing a survey looking at how accessible labs work and the quick summary was that we went out, we asked people who had an interest in this area to take part. We got 152 people responding, 55% had disabilities themselves.

Most had experience of working in labs, those that didn't were people like equipment manufacturers and most of them were UK based.

It was very biology and biomedical sciences dominated and most of the labs were based with either within universities or within NHS settings. Although there were a few pharmaceutical companies, industrial labs, etcetera within there as well.

Those that had disabilities, the most common were invisible ones. Fatigue, pain, brain, fog, neurodiversity, that sort of thing. Unfortunately, the summary of the survey was my lab broke me. I hope others are better, which came from one of our respondents we found that structural accessibility was poor, equipment accessibility was poor. That how people behaved and how people were accommodated was poor. We found that actually it got to the point of even being unsafe. We asked those that needed a personal emergency evacuation plan and that was 38. Respondents said yeah, I need that in the event of fire, you know I won't. I won't be able to get out without assistance or without a special plan in place.

Well, only eight of those 38 people had a PEEP in place. So four out of five people their employer is quite happy to allow them to burn. Let's just put this in in very clear terms. This is actively dangerous to people now. Those are very visible disabilities. They'll have significant abilities, significant hearing loss, significant visual loss to to need a PEEP. And we… Oh, sorry. I'm gonna. Oh, there we go. That's better. Can see you can see a larger screen.

So we created a suite of access guidelines out of this survey, and we also brought together guidelines that were out there already in the literature. So there was very, very little original in the suite of guidelines, but we wanted to cover the entire work ecosystem of working within a lab. So we covered structures, equipment, protocols.

We covered working practises, so HR stuff and we covered dissemination because of course the work that's done in the lab does have to get out to the wider world.  But I would have very much emphasised that these guidances are generalisable to the vast majority of workplaces anyway, so whilst we were financed to do it in labs, actually a lot of these rules are common in anywhere else and then people come to me and say So what should we do first?

And I kind of go all of it now. Well, yesterday, please. Like I say, I'm very impatient.

Then people kind of go but... And so I go, OK, let me break it down for you a bit.

Immediate targets around behaviour change are immediate in need and should be put. All of this should be put in place within five years. We need to track audits on things like PEEPS on loan working practises. We need to have training in place, we need to make sure that it's enforced, that everybody has to have some basic training around disability access so that we can get better quality work.

Being done better, quality research being done, and so that ethics are consistent in asking where are the access accommodations in this project?

We need to look at how we get this changed, so we need to do bystander intervention, allyship intervention training. We need to make sure that people are confident about what they are doing and I really apologise. But the slides are immensely small for me to read. So I'm kind of going from memory rather than being prompted by them. Structural stuff - now people get worried by structural stuff because they go, it's terribly expensive. And I go, some of it is, but most of it really isn't. And this this immediate list really isn't expensive.
It's putting cards on all of your red cords in all of your toilets that say please don't tie me up. I'm needed to be hanged down.

So if I somebody fell in here, they can actually reach the blasted thing. It's things like having different colours on the walls behind your toilets and your sinks so that they're not a white box. So if you have a visual impairment, you can go in and find the blasted toilet.  It's things like saying actually we really need to start looking at this entire infrastructure and going what don't we meet currently. Have that long list. So audit our environments really stringently against any standards, against gold standards, against the best aspiration and really try to get that to work.

Then we need to look at structural equipment in the five year term. And then here's some of the more expensive things. So we need to give notice on this, but I really want the funders to say to the universities in five years time we're going to start expecting to see this. So it's going to be radically.

Things like do you have an accessible toilet in the building you're working in and the reason that I'm asking for that is about 1/3 of my labs didn't have an accessible toilet in the same building as them, which I think you would agree is really atrocious.

Do you have a way to get everybody out? Do you have the evacuation chairs? Do you have fire safe lifts? Do you have audible and visual fire alarms?

How are you working with the access needs that you have? I apologise. I'm going to switch my slide cycle. Remind myself what I was talking about.

We need to look at basic ergonomics, the seating, the lighting, the acoustic environment. We need to make sure that the key roots through a building are all with light. Doors are step free, that we have levers and D handles and that we have changing places. That's a 12 metre squared toilet with a hoist and a bench and a bench so that everybody can actually can actually have access to a toilet they can use, and let's say within a 20 minute roll for five years, and then at 10 years a 10 minute roll. That doesn't seem too unreasonable at ask. And at 10 years we're going to want to have higher standards. We're going to say it's not the minimum access standard. We want a maximum access standard. We want you to look at some buildings and say, you know what, we just cannot make that building accessible. Let's disinvest from it. Let's sell it off to somebody else who can use it. Let's repurpose it. Let's not use it for our business

Let's put in those fire safe lifts that do cost a lot to do. Let's put in step free exits on all fire routes. Let's make most routes have light doors and step free access. And then let's look at some of the more complicated areas such as field work, boats, planes, cars, automobiles, etcetera. Let's look at where we're really doing the research and then we need to talk to the funders.

And say to them you have such big, big levers of power here, we really need you to take hold of them and give them a good yank. We want flexible deadlines or sensible deadlines. So before the major holidays, please not after them. We need the holidays to recover. We don't want the deadlines after the holiday. Let's talk about flexibility of duration full time part time extensions, particularly for studentships, but not exclusively for them.

Let's make flexible working normal. Let's make flexible roles normal, shared principal investigators. It's absolutely critical. I have to be a Co principal investigator. I am not reliable enough to take on that level of legal responsibility, particularly in clinical trials. Let's think about having a separate fund that you can quickly apply for, that you to get reasonable accommodations in place at speed to the standard that you need. Let's have also a rapid response research access fund. Because it is financially inadvisable to putting the costs of a BSL translator into every single grant. If you can provide instead a quick and easy online two weeks and you'll get the money form to get money for a BSL interpreter. Just in case you get a deaf participant in your study that you need to interview. So it's that sort of thing. Let's fund accessible practise for events to conferences and things like this.

Let's have a few prizes. Prizes. Always good fun.

And then let's have a look at research design. Again. Most of this can be done now. Most of this does not have substantial input costs. It takes a bit more time. It can take a bit more organising, but it's not usually very expensive for first and foremost, let us expect to have disabled participants in our research. Let's make sure that our patient engagement, PPI, patient and public involvement is of the highest quality. and that we've really listened.

Let's audit the EDI characteristics of researchers and participants. Let's have a common scale for these demographics. Hence why I put the Daisy link in the in the chat. Let's have our written information about the study being simple, clear, large text, large fonts available. Make sure that the electronic documents can be screen read. Let's make sure that you've provided a video with a BSL interpreter.

Let's have a section that says how have we made this project accessible? Let's have a section that says. Here's the map. Here's a video of the route from the usual bus stop or the car park to our research place. Here's a video of what we're going to be doing to you. The assessments, the masks that we're going to use, the route that you're going to use. All of that. Let's make it easy for people to take part and in and engage in the research and understand what they're going to have to do.

Let's train our principle investigators and ethics committees in particular, but actually everybody needs this training, and yes, we will need to put start putting in budgets, but let's put them into our bits. Let's put in budgets for accessible venues, for BSL, for easy read, for carers, expenses for travel expenses, for food expenses. It is all needed and will make a massive difference on the accessibility of our research. There's a bundle of references. This is a very short talk. So longer talks are here. And huge thanks to all the people that funded me and all the people that worked with me and the link to the access guidelines are there and I'm always very welcome to have anybody come and visit UEA and have a wander around my highly accessible singular building on the campus of 200. I've got one building I'll boast about that is highly accessible and you're very welcome to come and look at it. It has labs in it. Thank you very much.

Rachael Luck: Katherine, that's wonderful. I think a site visit or a visit to UEA to visit that building would be wonderful. If we can arrange that at some point in time.

Many points in that presentation which we can return to when we come back to the panel session.

Just a reminder to anyone if they want to write any questions within the panel session please add them in the chat and we come back to that and then Nicole, thank you for taking control, let you carry on with your presentation.

Nicole Brown: Thank you very much. First of all for thank you very, very much for having me. I'm Nicole Brown. I'm a curly haired woman with blue eyes sitting in a black top in front of a blue photographic background. And the slide that's the first slide. I know that you can download the slide deck. So for those of you who can't see that there is going to be an opportunity for you to use your screen reader. The first slide is literally just giving you the title of the talk and my contact details. And like Katherine, I'm equally happy to receive any communications you know that you would like to follow up on later on. Today I'm going to be talking to you about bodies and buildings. The lived experience of disability, chronic illness and neurodivergence in academia. And what I've got prepared for you in the next 15 minutes is a very brief context and background to this particular research project that I'm talking about today. And then I'm going to be explaining a little bit about embodied inquiry, which was the approach that I took for this research before presenting some of the data and findings and recommendations for practice.

So to start off with, I had done some work already on ableism and academia. For the sake of completeness, I'm putting a few links in the chat box to the books that Rachael mentioned earlier as well, and basically in that previous ableism in academia work there was this kind of idea around, you know, what managing disability means that you're managing other people's emotions and that there aren't enough role models. So it's really difficult to kind of be a disabled academic.

And then also the statistics tell us that disabled academics are really highly under represented. And we also found that drop off point a different position and transition sections. So for example, from undergraduate to postgraduate taught to postgraduate research into higher education as a staff member. So basically I then framed this as essentially a cost benefit analysis and that was the starting point.

So disclosure is really a cost benefit analysis between you know, what do I get out of an offer disclosure and what do I you know what what's the stigma and the consequences that I have to fear. So that was the starting point for this particular research which looked into the disclosure experience of doctoral researchers. So this was specifically about doctoral researchers. And I specifically called them doctoral researchers rather than PhD students because I do think that, you know a lot people are in that space between no longer being students but not really being staff which makes the whole journey even more difficult. Now let me go to how I did the research and to do that I need to digress lightly. Embodied inquiry is a an approach to research that basically looks at focusing on the bodily and embodied experiences. There are different kind of categories of what it is that you can, you know, look at and how you encourage the use of the body in in the research.

But essentially, the theoretical foundations lie in phenomenology and hermeneutics, and also build on the cornerstones of human understanding and communication. And that is that on the one hand, human understanding is intrinsically embodied, and we just have to think as to how children grow up and how they learn about the world. We cuddle and hold and sway the babies, and then also they put things into their mouths. So it's an intrinsically embodied way of learning about the world. The other element is that language is often insufficient and inexact. I often give the example of thinking you know with a headache what kind of words would you use to describe a headache? But then what about the headache that you get as you come down with a migraine? Or as you come down with a fever, or as you have hangover, they're all headaches, but they feel different. So how can we express that in language? And often we find that language doesn't really help here.

So because the human understanding is embodied, and because language is insufficient as human beings, we're automatically drawn to metaphorical representations, and that's something, then, that embodied inquiry taps into. So when you look at how we generate data in embodied inquiry, we're looking at things like visual representations of experiences. Yes, we do have conversations as well, but it is really about, you know, trying to find different ways of communicating our experiences.

Because we recognise that we need to tap into metaphors and we recognise that language doesn't help sometimes, and because our knowledge is very much embodied and produced and relational in that particular context that we live and work with. So for this research, therefore, I basically asked participants to send me photographs of their handbags, and I'll show you a couple of those in a minute. The participants were recruited by a social media.

And people were basically just opting in. I'm just telling me, yes, I'm interested. I'm in. And it was 12 participants with 10 identifying as women and two as men. One person dropped out at some point.

But across those 12 participants and there was a huge range of disabilities represented. So we had, for example, one wheelchair user, one participant using a white cane, three with one or several neurodiversities. How they've defined them, whether we agree with the terminology or not, is a different matter and I don't want to get into that here. But these were the self identifications from participants. So the neuro diversities were mentioned were autism, Asperger syndrome, dyslexia, dyspraxia, attention deficit and hyperactivity disorder.

Several participants had a diagnosis related to mental health issues such as depression and bipolar disorder, and either they had it on their own or in conjunction with psychosomatic conditions such as fibromyalgia, other conditions and disabilities were also mentioned, such as narcolepsy, asthma, chronic migraine, cystitis, irritable bowel syndrome, and I hope I get this out because I never I never do. I always stumble over those words. Postural tachycardia syndrome (pots) and traumatic brain injury following an accident. And in addition to that, people also mentioned fatigue, sensory overload, headaches and nausea. Now you could argue that some of these symptoms, you know are issues in themselves, as in are conditions in themselves. But you could also argue that some of these are related. I mean, it's difficult to know, for example, whether depression is a response to being neurodivergent or or, you know, being diagnosed with pain condition or whether that's in itself something else.

So as I said, the the kind of conditions that are mentioned here are exactly how the participants categorised them for me and in their self identification. But it's quite important to say that you know they separated out particular things like the fatigue and the sensory overload. But that's really important in view of the findings later. So let me show you what I've got in terms of data. Here is an example of what a participant sent me. This is a photograph showing like a little purse with objects strewn around it and it has got like a pack of tissues. And sorry, a contact lenses box, a Tylenol stick? Earplugs. What are these? These are cough sweets. And there is one that's like a little aromatherapy oil. There are some tablets visible. So this is obviously an example of how people represent their experiences, but also how they manage their conditions. So here is another example with two purses being turned out, so that is there's a smaller one on a slightly bigger one and we see we can see cold packs, sunglasses, we can see tubs of medication. There is a couple of in while they're lipsticks and nose inhaler things, there's also some orange juice and some protein bar as well as a water bottle, which is empty on this occasion, but which would usually be filled. And the last example I'd like to share again because it's quite important, is a screen reader, so this is somebody with a visual impairment who's basically carrying around the screen reader. Quite a big, quite a big sort of chunky machine to carry around.

For the sake of completeness, the analysis was done as a thematic analysis in the iterative, inductive, semantic, reflexive form according to Braun and Clarke. But there was also this kind of exploratory a creative analysis which is in line with embodied inquiry, but I'm not going to be talking about that today. I'm just going to jump straight into the findings. So a lot of people were talking about managing the buildings, and they were saying things like, you know, it's really difficult because buildings are actually fluid. They don't stand still there. There is nowhere to sit and nowhere to rest, nowhere to rest.

But that is because there are other people using that resting space, which obviously makes it very difficult for anyone with disabilities. The other thing that they were saying is that sense and smells are sometimes really hard to take, and that's not necessarily about people's lunches because that's the first thing that everybody thinks about or somebody must have had some offensive lunch. But actually this is not about that. This is about perfumes and cleaning fluids. So there was one particular person who was saying that they were triggered by the cleaning fluids. And there's a particular kind of spray that the cleaners are that causes you know sort of fits that are similar to epilepsy. So it's quite triggering and really quite disabling as an experience and yet obviously that's something that you can't really avoid. And then obviously Katherine's already mentioned the issues with Lifts. So staircases was another thing that were mentioned in my research, how difficult staircases are to manage.

The other thing that people were saying is that actually it's a lot more you know, than a consideration about career. It's not just helpful to have adjustments. Yes, adjustments are important, but adjustments aren't the thing because it still makes you stick out. And that goes back to the person with the big chunky visual help reader, visual screen reader.

You know, it's not really helpful to have that adjustment there because you stick out like a sore thumb when you come, you know, lugging this big thing and you kind of just have to disclose how bad your eyesight even if you don't want to. You know you've got no way of actually escaping that. So in terms of, especially because this is doctor researchers, they're obviously thinking about where will they fit in higher education at this stage, a lot of them don't necessarily want to disclose, but feel they can't really escape it. And that then leads to that social and emotional loneliness that they experience. They already experience some kind of loneliness because they obviously have to deal with a lot more than just doing the research and just going and doing the hard work they have to deal with the emotions and managing the symptoms and all the rest of it. But things like you know, where do I fit? Do I belong? How can I actually manage in everyday life, make that loneliness even more pronounced. So to go back to the so cost benefit analysis is even more relevant for doctor researchers. So what can we do?

Well, the things that we're kind of considered or the recommendations that coming out of this particular research is that as supervisors or academics, we have to challenge our own assumptions. We can't just assume that because somebody's got an adjustment or because we've made the building accessible, that actually everything is truly accessible. Again just consider as to how many people dumped their bags on the floor and then a person with with visual impairment or a person using the wheelchair may not be able to go through the corridor because of umpteen bags on the floor. So it's, you know, it's it's just trying to kind of think about.

About that kind of behaviour that all of us are displaying and I include myself. I tend to put bags on the floor 'cause I don't want to hold it for too long. But you know what? What does that mean on the other end, on the receiving end of that, the other thing is really important is to involve individuals in processes and decisions. There are a lot of situations where people were asked to hot desk and were then moved, asked to move tables or or the situation was changed and they had, you know, restructure a building restructure and suddenly the desks were in a different position.

That's really that's really difficult because a lot of the people that are disabled choose a particular space for accessibility issues, for the reason that they can have the light behind them or that they are away from the sunlight, or that they are by the sunlight, or that they are by away from the flickering light. So there are a lot of different reasons why people you know sort of decide on the spaces they use and by just saying, OK, I'm moving you to this other table now, you could potentially trigger some serious again some serious epileptic fits or, you know, narcolepsy incidents.

So there is a lot that's happening around those kinds of decisions that are often taken away from people. And the final thing is to share our own struggles and you know, this is doctoral researchers were saying they should do that, but then they were looking to examples and good role models. So it's again, it's really important to kind of hear from other people that they are struggling too and that some certain things are difficult to manage.

I'm gonna stop here. It's exactly 45. So I've done my 15 minute again for the sake of completeness, I just share with you my contact details and I just show you the two books covers and that's it. Thank you very much.

Rachael Luck: Thank you, Nicole. That's wonderful. And for sharing those slides with the links through to the through to the books as well. So if we move now on to speaker three, so Hamid, would you like to take control of the slide deck, please?

Hamied, I can see you. Yeah. OK. Coming through. Yeah. Wonderful. Thanks.

Hamied Haroon: Hey guys. Hello.

Good, good. It's still morning, isn't it? Good morning everybody.

Thank you so much, especially to Professor O’Dell for inviting me to give a talk on this panel. It's a real pleasure and privilege to be here.

So the speakers before me are esteemed academics. I'm just a lowly researcher, so I'm Hamied Haroon. I work at the University of Manchester.

So I'm a brown man with a very shiny bald head and a nice Santa Claus style white beard sat in my wheelchair in my office right now at the university. So I'm a research fellow in constitutive biomedical, MRI Emission. And yeah, I'm going to talk to you about why disabled lives really do matter.

Oh, let me see if they can. What else?

Here we go. Here we go. So, yeah. When I was in Primary school years I should start by saying that I've been disabled all my life. So in Manchester at the time it was impossible to go to a mainstream primary school site so went to a special school, which was full of disabled children, there's me with my friends. We used to do all sorts of crazy things like wheelchair dancing, sports competitions against other disabled children's special schools and we had a whale of time and they taught us like the most important lessons about how to get on in life being disabled, but it's like you're all disabled. So none of you are princesses so get on with it. And make the best of life that was great. But the academic kind of stimulus wasn't there being in a special school.

So I was very lucky to be in the right place at the right time, you could say.

To be chosen as one of a few disabled kids at the time to go to your mainstream high school, and it was probably the roughest high school in Manchester, but it opened my eyes especially to science. And watch these kind of programmes, like tomorrow's world.

Sorry everyone. Can you see my slides? OK.

Is this working all right?

Speaker 1: Yeah, we can see them.

Katherine Deane: Yeah, we can see them.

Rachael Luck: Yes.

Hamied Haroon: And so yeah. TV programmes. I don't know if you remember programmes like tomorrow's World and Star Trek. They were just like they fuelled my passion for science. Of course we have no science labs at the special school I went to. But in high school, of course, you get exposure to science labs and to all sorts of subjects, all sorts of knowledge and things that other the kids, we're doing that I didn't get to do. So it was such a it was such an exciting time. And it was Doctor McCoy on Star Trek. He had this little probe and he used to wave it over somebody and find out what was wrong with them. Give them a pill and they used to be cured just like that. And so I wanted to be a doctor just like Doctor McCoy.

However, when it came to careers advice, I was told that there's no way you could. You could become a doctor because you're disabled. And how are you going to get into a career like that?

So my mum said oh, never mind. You can become a lawyer instead. There's no way I was going for that. So I decided to carry on with my passion for science and  I got the best GCSEs of my year in my school, and then I went on to college and did physics, maths and biology absolutely loved it. And just by chance I saw this book on my A level teacher's bookshelf that was called Medical Physics. And I thought, what's that all about? So I took the book, gave it a read and found out that it would be possible to get into medicine as a physicist. So that's what I did. I carried on with my studies in physics and I read physics at what was then the University of Manchester Institute of Science and Technology in this lovely building, the Sackville St Building, which was probably built back in 1824!

It was a very old style building and I had to negotiate horrible lecture theatres that have just fixed benches and tables. And even steps, you know, those tiered kind of lecture theatres, they were worst. And laboratories that were not accessible to me as a wheelchair user and buildings and all sorts of spaces that I couldn't couldn't really get into even the library just getting books off the shelf. was so difficult. But what really annoyed me was when I was elected to their students union as the Disabled Access Secretary, and there the the Students Union building was like 3 floors up and it was up on the top floor where the Students Union Council, that's where all the important kind of decisions were being made, where all the discussions and activities and all sorts of things were happening. But there was no way to get up there because there was no lift to use to get to the top floor. So other students literally used to have to carry me up the steps to get to meetings at the top.

It was a horrible experience. It's so scary to be lifted up staircases. And you might be wondering why there's this big white area here. So the student union somehow convinced me that I should do a bungee jump to actually protest against the lack of access, particularly in this Students Union building. And so that's what I did. And this featured in the Times Higher Education Supplement and other media outlets as well grabbed pictures of this. This was on the side Oxford Road, which is at the main road. The university campus side of the road, and a bus had stopped to see what this crazy guy was doing in a wheelchair doing a bungee jump. My mother and father could not, you know, they they just screamed the whole way through.

They did not realise what I was up to. I got into a lot of trouble with lots of people.

But the university still didn't really react on finding money to get the building sorted.

So anyway, I continued with my studies and I wanted to do an MSE in medical physics because that was the area I wanted to get into and it was the Snowdon trust. I don't know if you guys have heard of that?

The Snowdon Charity supports physically disabled students into universities and higher education. So the picture I'm showing here is of the medical school at the University of Manchester of Manchester, which is exactly where I wanted to go. And that's where the MSE was based. So I made it into medical school, even if not as a prior, you know, to do medicine as such. And I stayed on and did a PhD, did my PhD in Medical MRI imaging and have worked there since then in the same field. So I became a doctor, just not the kind he can save your life.

So there we go. Do I enjoy working as a research scientist right now? I absolutely do. I love it. Ilove collaborating with all sorts of clever and inspirational people across the globe. That's that's kind of reach reach of science gets people work with people from all over the place eating and engaging with bright young people who always have longer hair than I ever did. Well, I don't have any hair left. Being creative, facing new challenges every day, which is kind of sometimes makes you wake up in the middle of the night and presenting an international scientific conferences. The best ones have been in Hawaii and the South of France and Canada.

Absolutely amazing to be able to visit those places for work and science, of course.

But what's really important has been access to work and the funding to be able to actually get into work and do what I do. So as a disabled student, I had the Disabled Students Allowance that funded the support I needed. But as soon as I became a member of staff, all of that disappeared, of course. And finding out about access to work was just by chance.

Somebody from HR in fact suggested that there might be a scheme available that the government do. So let's find out about it. And yeah, The Access to Work Scheme is still not very well known about. It's almost like the government don't want us to take advantage of that scheme. Funny, isn't it? But yeah, it's there. And so very important. And I think for every pound that's spent through the Access to Work Scheme on disabled staff, I think they make back £1.40 something like that - it's definitely worth the investment enough.

So from those experiences of the lack of support and at the university at the time, there was nothing for supporting disabled staff at the university, students were well supported, but not staff. So at the University of Manchester we formed our disabled staff network and then we found out about others in other higher education institutions & NHS Trusts, who are all going through the same kind of initiative to set up their disabled staff networks. So we were hearing from each other and then this idea came that why don't we hold a conference which is what we did at the University of Manchester and brought together over 100 people from across the country representing disabled staff networks or disabled staff groups, universities, colleges, NHS trusts, all sorts of different organisations, even the BBC came along. And we launched the National Association of Disabled Staff back in June 2014.

So we'll be 10 years old next year.

We are a super network with the mission to connect and represent disabled staff networks.  We do focus on tertiary education sector and the public sector. So NHS trusts etcetera. But we welcome any individual and organisation from any sector who are committed to promoting the equity, diversity, inclusion and access of disabled staff. We act as a collective platform to share experiences and good practice.

And examine those challenges and opportunities we face. All together we are a non governmental thank God, independent, self determining and dynamic community led by and made-up of impassioned disabled people. I fear I'm going to go over time Rachael, so please tell me off if I do.

Some of our aims, let me see. Let me just focus on this one here. So we are challenging the stereotypes by endorsing the social model of disability, promoting a positive image of disabled people and eliminating that deficit medical model and that that really doesn't help us at all.

So the social model of disability, as I know colleagues, have talked about this morning, so just reiterating that the social model of disability identifies systemic negative attitudes and exclusion by society, whether that's on purpose or inadvertently. I mean, it's society, which is the main contributory factor in disabling us as people. This includes prejudice, ignorance, stigma, negative attitudes, inaccessible places, of course. Transport conversations and information.  Like the government's briefings around COVID the UK government anyway, had no BSL interpreters. So how was that information supposed to be accessible to everybody? It wasn't, and much of the time information is presented in a way that is inaccessible to learning disabled people too. But there are new models.

Two minutes. Sorry Rachel.

They had new model coming out as we kind of evolve our understanding of disability as disabled people, which also include chronic illness and neurodiversity, as the affirmative model of disability and other such, the Scope website has this brilliant video kind of explaining how this well, what the social model of disability means to us as disabled people.

And I'm going to skip over this because it's don't have much time.

Rachael Luck: Perfect. Thank you. I'm just going to say we went to try and leave some time to ask question or two if we can, yeah.

Hamied Haroon: Absolutely. So yeah, there's this kind of ideal academic about having no caring responsibilities, being able to work 24/7 like Kate Sang and colleagues identified in a study back in 2017. So a model that we're supposed to be able to fit to, to be an like an ideal academic or scientist. And of course we, we, you know, none of us fit this model. So you know, the model usually breaks us and we leave academia.

But why can't we break this model down and change research culture?

Hamied Haroon: So we have a brilliant group within NASDSN and that's the STEMM Action Group which Jennifer mentioned earlier this morning and we we've put together a problem statement around how disability is excluded in STEMM subjects. I won't go through this figure right now, but the slides are available and there's a link.

Rachael Luck: If you wrap it up, that would be wonderful. Just to give people the. Yeah, I yeah.

Hamied Haroon: I'm just so sorry. Yeah, and just to mention that we're starting up this disability map, this project. From this month and NADSN is taking a key role in that. Thank you, Rachael. Thank you.

Rachael Luck: That's wonderful, Hamied, and important to mention that significant research project at the end. So I'd like to invite all of the speakers to come back on camera. And I know yesterday when we were coordinating this, you were really keen to give everyone in the audience the opportunity to speak first. So I'm just going to ask Sharron if we have any questions in the chat and there are many, many comments in the chat, but are there any particular?

Questions in the chat that people want to start this conversation on.

Sharron Jenkins: Not yet, Rachael.

Rachael Luck: That that.

Nicole Brown: For to kind of just starting to think of questions now, so if you've got a question that you haven't put in the chat, feel free to raise it. Now, raise your hand virtually or really and come join us. Join the conversation.

Rachael Luck: Yes.

And then while we're waiting for that, should we just go on to a sort of a basic question?

Nicole Brown: There's already a raised hand, Rachael.

Rachael Luck: Who's there? Let's have a look. What? I can't see a name against that. Who's ready?

Nicole Brown: OK, so it says here Catherine. Catherine.

Rachael Luck: Catherine, would you like to speak? Open your. I don't know whether you can open your microphone and speak. Or type out in the chat.

CP: Yes, I I can now, it's alright the I think the hosts have to do it. So yes, I just had a question about the Access to Work Scheme in terms of the routes for it because I only know the GP route and the GP is saying oh, it takes two years and that there's a gatekeeper within the health trust or something that just knocks them back. Are there other routes? OK. Sorry to ask such a prosaic question.

Rachael Luck: Yeah.

Katherine Deane: I can jump in on that. Your GP is incorrect. I'm afraid. It's not actually regulated by them at all. You as a disabled person, apply directly to Access to Work. They may ask you for some additional proof, so a letter from your GP stating your diagnosis or your access needs, etcetera. But it is you as a disabled person that go and access them. There are some delays and I think you have to be very realistic about that. It is a relatively still unfortunately an adversarial application process and that it's trying to find that you don't need it, so be sensible about it. Do talk to a disability advocacy charities about how to make your application really work for you? Absolutely get occupational health on board if that's relevant to help. Again, evidence your need and and things. But be creative about what you're asking for. Really ask for the maximum. Do ask for assistance. As somebody mentioned further back in the chat somebody got assistance to help them manage their emails and things like this. And if you are neurodiverse, that can be incredibly practical and helpful.

So talk to people.

I'm very happy to chat and feel free to e-mail to e-mail me.

I will very happily chat you about this sort of stuff, but it's actually you that applies, not your GP.

Rachael Luck: Any other questions from people in chat the thank you.

CP: Thank you.

Rachael Luck: We're kind of running out of time in this session because the presentations ran on so long. Do we want to try and address any other points or should we, are we ready for a break?

Katherine Deane: I'll just address a point of clarification in the in the chat, was people asking me what do I mean by light doors and I'm terribly sorry that was very short handed of me. I meant lightweight doors. 30 newtons is usually the standard that's regarded as best practise, that they shouldn't be in excess of and most of the time it's a case of exactly as people were saying in the chat that you power them up or you have them on hold. Magnetic hold opens so that they only close in the event of fire. But yeah, lightweight doors if they've got a fire door closer on them. Generally they're not lightweight, that's that gives you an idea of how lightweight door has to be to be regarded as a lightweight Sharron, you was just about to jump in there.

Sharron Jenkins: I've we've got a question from Jane May, Martin and Jane wants to know how can we include disabled, professional and support staff who are part of the academia in these conversations. As researchers, I find the idea that academics are only responsive. (Sorry, just jumped) responsive to research, as has been previously floated to in itself be ableist. A lot of professional and support staff have research as a key part of their role.

Rachael Luck: So who would like to step in and respond to that?

Nicole Brown: Well, I'm quite happy to start the conversation and then Katherine can add as well. I mean, I have done significant amount of research with academics and yes, I agree with you sometimes it may be difficult to get academics with disabilities on board, but I find it's not about them not wanting to do the work or not to seeing this as relevant or not seeing that input as important or anything like that. It's more you know that they are tired. These are people that have got disabilities, they are having to struggle through everyday life.

And as soon as in higher education, you are known as a disabled person, you are on every hiring panel on every EDI panel, on every Athena Swan meeting, you know. So it's a lot of extra work that's being placed upon all of those kinds of, you know, sort of disabled staff. So you know, by then saying, well, I've got another something that I need you to be part of you are you are extra burden you are you are laying another level and another extra burden upon these people and I'm very aware of that, but at the same time, a lot of these academics.

So that's one reason why they may not be wanting to contribute the other reason they may not want to contribute is because they are worried that their issues are coming out too clearly and they are identifiable. So for example, as I said earlier in my presentation, one person was talking about, you know, issues after a traumatic brain injury. I mean, you can imagine that anyone, you know who's a doctoral researcher or an academic, they don't want to be known as the one with the weird brain, right?

So that's the thing. That's the reality, and this is. This is why, you know, there is always this kind of concern, you know, how much are you able to keep them, you know, like really confidential anonymous by sharing the handbag for example. You know, I have got a very distinctive pencil case. Everybody recognises my pencil case just by, you know, sharing a photo of my pencil case. It would be, I would be identifiable. So there are these two issues that we have to contend with when we are doing this kind of research with disabled academics. So I would suggest in practicalities, trying to reassure your participants that you're doing everything you can to keep whatever they put to you confidential as much as you can, making sure that things that are shared has been agreed with them. So, for example, those photos that I shared with you that was agreed with the relevant participants.

Nicole Brown: Other participants had shared images that I'm not using even for conference presentations because that's not been agreed.

So is that kind of element, that rapport that you build, that trust that you have to to, you know, enable that, that will be an important part. And then the other thing is to actually educate non disabled academics so that they sit on some of those hiring panels.

And actually take some of the extra labour off disabled people, I mean, yes, OK I may not be a black person myself. So you know, anyone putting me on a hiring panel knows that I'm a white woman with disabilities, so I take two of the disabled. But you know of the of the special characteristics boxes but not the third one. But that doesn't mean that I can't be sensitive to issues around race and ethnicity. So I think it's that kind of, you know, allowing people to say, well, OK, I'm not disabled, but I can be a disability advocate and that will actually take pressure off some of the disabled academics work as well. Katherine, come in pitch in.

Katherine Deane: So I'm looking at the chat and one of the clarifications that we've got on this question is actually they're wanting to make sure that professional and technical staff are also involved in these conversations. And I completely agree. And I will note that my Access All Areas in labs guidelines have two technicians on board, OK, one of them's my husband. But I did pay him for his time on the project. So he was legitimately there employed. But you know because I'm the wife of a technician. I know exactly how critical they are to making lab work for everybody, but particularly for those with disabilities. So it's absolutely critical to involve those voices in this sort of research to make sure that they are held in. But also, I would challenge that academic research is the only way to influence this particular discussion. I have what I call a toolkit of various things that I use and techniques that I use to try and get change implemented. And one of my favourite ones is weaponized embarrassment.

And I use this regularly by rolling into a meeting and saying, well, if you don't talk to me, I'll go and talk to the press about it. I'll talk to the public about it. I'll talk to the professional bodies about it. I'll talk to the registration bodies about it. I'll talk to the charities about it. You won't stop me talking about it. Oh, ****. We've got to do something about it then.

And bluntly, I intimidate people into doing the right thing. At times. I am quite proud of the fact that I had got told of a conversation that went on in estates a little while ago where we were refurbishing our music department.

And as usual, we got to that point where you have this much building, but only this much budget and they don't match and you have to decide what you're not going to do and people were throwing onto the table ideas of what they wouldn't do and the accessible toilet and the powered front door went on to that table. And I'm thinking right, this is going to be an awful story, I'm going to be in going to be in trouble again. I'm going to cause trouble again, but actually they went round the table putting in all the various ideas for saving the money.

By the way, this was a building that didn't have a powered front door and didn't have an accessible toilet in it.

So this was a really important things to have on it.

And it got to the back at the back to the beginning and it was sort of OK. But who's going to tell Katherine? And they wimped out. I'm very glad to say. And so we have a power door and we have an accessible toilet. So sometimes you have to be the awkward ****** in the room saying, no, I will not shut up, I will not step down. I will not back down. I will put a line in the sand and I will hold it and I will hold you to account and I will hold you to your mission statements. And yes, sometimes that's great fun sometimes. I mean, I've trashed my promotion prospects. I don't worry about that. I'm far more of fun having great, more fun knowing that I've got students in that wouldn't have considered doing university before. I've been told that explicitly by number students knowing that I'm doing research that genuinely has impact on patients’ lives because they asked us to do that specific sort of research in that specific sort of way.

There is so much benefit to having a greater diversity of voices to being out and proud and inclusive. But yes, the toolkit is talked about. It's one of the presentations that I have on my slide kit. So you can click the link and the toolkit is there and me talking about it. I did. I created that for the Vitai conference. But you're very welcome to go and have a look at that. It's on YouTube as well. But yeah, let's go for that.

Rachael Luck: I'm going to ask when we were speaking beforehand, I think you mentioned about some new build buildings in Manchester. Do you have any stories about new build difficulty with accessibility?

Hamied Haroon: Yeah. So old buildings have. Excuse me, their excuses for being excess inaccessible. But when it comes to new buildings that I find that completely unacceptable. So we've got new buildings on our campus. And there are major buildings, very shiny buildings, glass buildings. And we asked to be able to, you know, as a disabled staff network be involved in the design process from the start. They talked to us for a couple of meetings and then it all went very quiet from our perspective. We didn't really know what was happening with the building's design or construction, and up it went. And now there are so many issues with the building that actually disabled colleagues, many disabled colleagues who can are refusing to go into that new building and work because there's problems with the sounds echo with the lighting, with all sorts of different features. But the thing that really gets to me is the entrance of the building that there's one entrance for everybody else, and there's a different entrance for disabled people to access the building and I find that completely abhorrent because it's really segregation, right of disabled people from everyone else. If you try to do that in this day and time when it comes to race that white people go through one entrance, black people go through another entrance, they'd be uproar. Why should disabled people have to put up with that? And now they're finding problems with the disabled access entrance that non disabled people are using it. The building is losing heating because of that and now they want to encase the button you have to press for the door to open. We want to encase it so like people with dexterity problems. I can't use my fingers so I can't press the button if it's encased inside a box. You know, I use my elbow or my wrist or my nose even to open the door. Now how am I supposed to do that?  They're just making it more difficult for the wrong group of people.

I said to them. You know what you need to trash the whole of your entrance and redo it, you know, get sliding doors in there. You know a pair of sliding doors. Just like some other buildings have. So everybody can go through the same entrance. Why didn't you think of that before? So you know, there's plenty of other issues that come up with new buildings that are really annoying. Sorry. Katherine and Nicole, you want to go?

Katherine Deane: Yeah.Yeah. No, no, no. I I'm wanting to jump in and go this, this, this exactly this.

I was very lucky. I had a Vice-Chancellor who I had a coffee with very early in his day in his start of his tenure, and I took him to one of the new buildings, so I was able to say lovely that the front door is level access and has a power door. Shame that as a visually impaired person, I'm blinded as I enter the building because the lights are too glarey.

Shame that I can't get into the lecture theatre because the door is too heavy. Shame as a lecturer, I can't get onto the stage because I'm a wheelchair user. God help me if I needed a carer cause the toilet is rather small and the lift is even tinier.

And he just sort of, you could see his face going...

And I went. I can save you money in the lifetime costs of that building. I can save you money. And that's what we've really got to get it through to these institutions is that it is mandatory to have disability voices right at the start before your appoint the architects, you appoint the disability interest group and preferably pay them, or at least allocate the workload time. But when we're involved, we will stop so many of these errors being put in place. The builders only will put up what the architects put in and the architects are rarely trained on this stuff and they won't aspire to the maximum unless you tell them to do so, which is why I designed.

I had back in 2016 an access guide, which is what informs my new science building. It prevents cost.

We have power doors throughout my new science building. They cost £1-2K a door to buy and install.

I've got an old building, 1960s horror.

That we have also had to put a lot of doors into.

Anything up to £15,000 per door to install those in that building. The cost is horrendous to retrofit, get it right the first time when you're doing the refurbishments, do it to the highest possible standard the first time and yeah exactly as Hamied says, you end up with buildings that are inappropriate for anybody to use because anybody can at least be temporarily disabled. You know you trip over, you break your leg, you need to use crutches.

You have a baby. Whatever it is, we need to change the attitude to this and work out that disability access can be put in place right at the beginning. Cheaper than putting it in retrospectively. We built that new science building on time and £1.25 million under budget. It doesn't cost more. It costs less in the lifetime cost of the building.

Rachael Luck: I think Nicole, in your presentation, there was something wonderful. There was a slide which was talking about this sort of management issues and things and about people's experience of smells and things in different environments. I'm wondering whether this ties in a bit more to about the issues of sort of management within universities. You know, Katherine's given a very clear description there of getting that sort of high level access, that initial conversation through you then were able to negotiate a position to have more of a voice.

An important voice through throughout that process, I was wondering, Nicole, if there if you would like to come in and say a little bit more about some of the management issues and things through your that you're experiencing your research.

Nicole Brown: Yeah, I think to be honest, you know the issues are the same everywhere. And I think there is a problem sometimes with architects and interior designers not necessarily understanding disability issues. They say they want to include disabled voices, but they haven't been trained to genuinely include disabled voices. And I think there is there is a problem there and I'm talking specifically, you know, about one university having refurbished a new wing sort of thing.

And you know, the room is echoey. Like Hamied said, you know, the room is echoey and it's completely inappropriately laid out because there are pillars inside the rooms. You, you know, if you are at a particular point, you can't actually see the speaker because you've got a restricted view. You know, I mean, in the theatre, you get the cheap seat for that. But, you know, this is the thing, you know, unfortunately, interior designers don't necessarily think around those kinds of practicalities and pragmatics.

So I think that it it's again there is a case of raising awareness and increasing that kind of disability campaigning work and lobbying work and advocacy work that we do and in many ways that brings me to one of the questions in the chat, if I may. There was a question there that says, May it be that disabled academics are forced to give up scholarly methodological commitments to be successful in disability studies or campaign work?
And I would suggest absolutely.

I don't know Hamied. You know. How do you feel about this, because you are obviously working very, very much around the NADSN work as the chair of that network. And so you're doing campaign work forever. Do you feel? And I know we've had that conversation. So I know I can ask you that. Do you feel that sometimes people forget that you're actually doing something for a day job and that you've actually got a research role in your in your work throwing that open to you?

Hamied Haroon: Thank you, Nicole.

Yeah, definitely. So even what I'm doing right now is not part of my day job. This is not what I get paid for. I'm doing this out. The love of and the passion of kind of raising our voices and being part of these really important events. To share our experiences and talk about them. But yeah, EDI is definitely, you know, undervalued and particularly when it comes to disability. I think when it comes to disability, like in the EDI in higher education, you see a lot around gender. You see good things around race. Well, you hope they're good things. You know, the LGBT community is strong, but disability just is like hiding at the bottom of the pile. And, you know, even with the Charter marks, there's a move to make an integrated charter marks scheme, right, where Athena, Swan and the Race Equality Charter mark.

Are going to be brought together and it's going to be intersectional and disability will be included, but you can see straight away that disability won't get a look in. You know when they're prioritising what universities are supposed to be doing. Where's disability going to be and where we're trying to raise our voice from the National Association to say, look, that's not good enough. Let's have a charter mark that that we design as disabled people in the sector. Let us design a charter mark around disability specifically.

So we can see some action and some good things happening that will mean something to the disabled colleagues on the ground if you like, and not just, you know, tick boxes for universities, whatever those tick boxes might be. So yeah, there's a lot of hard work still to do, to have disability recognised as something we need to focus on. I hope that helps.

Rachael Luck: I  was wondering, Katherine, whether you wanted to pick up on that, because I think we've had conversations before about different action plans that have been coming through and this has been in the last year, if you'd like.

Katherine Deane: Yeah, UKRI recently released their EDI Action Plan and it barely had the word disabled in it, let alone accessible or reasonable accommodations or anything like this. It was barely mentioned. It was a huge miss, and it they're not unique. There's many, many other diversity plans out there that forget about disabilities and there's questions in the in the chat about how are we holding people to account, how are we going to get this to be changed? And I think this is where the funders really do have a very important role to change the expectations. They will require a university to have basic health and safety standards. They will require data security. Why aren't they requiring a minimum standard of accessibility and exactly as Hamied is saying, we need to get together in a room and start to really hammer out what are the minimum standards for accessibility before you get grants any more and to give them a five year notice that this is going to come in and you've got to start spending money on some of this stuff because it is so basic, so integral to human rights and dignity. Like I said, having a toilet, being able to get through doors without damaging yourself, being able to hear what's being said. And you know when there's also comments about, you know, what about staff and students teaching and research. Bluntly, it's all the same stuff. It's all the same barriers. It just needs to always be there in the front of your mind. How are you communicating? Does that get across? How can they get in the room? How can they be comfortable? All of that sort of stuff?

And shall we ask? I don't know if Laura Catherine Kelly wants to ask her question. Because I know she's been waiting a little while.

Speaker 1: I can't see her hand up anymore.

Katherine Deane: Don't know if she needed.

Alright. Oh, hang on here. Here she is. She coming in for us?

Speaker 1: Catherine.

Sharron Jenkins: I think.

Laura Catherine Kelly: Thank you. Sorry. Yeah, my mic has just been activated. Can you hear me OK?

Katherine Deane: We can indeed wonderful. Go for it.

Laura Catherine Kelly: Lovely. Thank you. And I just want to say first off before I ask my question that you know, thank you for hope for holding this event. I found it very. I'm finding it very insightful. I think sometimes we may get kind of bogged down in our you know, our disability activism from our own perspective, our own needs and it's been very insightful hearing from Katherine and Hamied in particular about, you know the physical side of things. So that's thank you very much. I found Hamied, when you're talking about building design, I didn't realise by the way that my location, my actual institution was mentioned. To be fair, I don't really care, but it's going to make it very clear in a moment what building I'm talking about. So we have a new building being made and there's big, hoo hah about it and there's going to be a lovely big super lab for teaching. And whether I should mention my disabilities related to neurodiversity. So I'm I've got Asperger's. So certain things are obviously going to be very triggering for me and the idea of having 200 students in a lab and the fact that you have a lab for 200 students and that the people designing this building internally are saying, but we've been to these super labs all over the country and in different countries. Is this the way it's going? I've put forward my concerns about yeah staff teaching in these places, teaching undergrads and research students, you know, they're the academics of the future. And we have so many students who have disabilities, so are on the spectrum who have dyslexia, dyspraxia.

And for me, I can see that these spaces and the super labs are one issue. The other teaching spaces are active and I'm doing air quotations here. You can't see me, but "active learning spaces" with these desks and chairs that you move around and you're supposed to write on walls and interact in groups with people. Personally going back 10 years ago, I was such a wallflower, so introverted, I wouldn't have said boo to a ghost. Now I've got a case of and if I'm allowed to use an expletive.

I call it. I don't give a **** itus because I have been, you know, walked over by staff management, HR - it's like you really can't do anything more to me at this stage except fire me, so I am going to speak my mind, but I've heard from management, oh, yeah "you know, during the design we've had input from people on EDI committees" and I'm thinking "we have an EDI committee."

Great.

And I can see this is not going to work for me. There's certain issues I'm going to have, but I'm just wondering collectively people's experience and is this the way the future is going for teaching our research students and for doing research that we are literally going to be forced to do these things that aren't constructive for us and definitely aren't constructive for our disabled students? I just think it's a real shame and universities pay lip service to inclusivity, but in reality if it looks good on paper, if it's marketable and looks like this lovely innovative space at the end of the day, that's what they care about. That's my impression. Thank you.

Katherine Deane: Yeah, I'm going to jump straight in because we absolutely the new science building, the top floor is chemistry and the lab is for 150 students at a time. It's huge, it's massive. It's really challenging. But we have got acoustic baffles in place. We have got a large amount of spacing between each bench. That was deliberately for wheelchair users, but it also means that everybody isn't on top of each other. So it helps for neurodiversity as well.

And it means that, you know we're trying. We have got foldable doors across it. So zones can be made of certain areas and things like that. We have thought about it in terms of that overload of so many people in a space. And we've tried to maximise the accessibility of that space. But I agree for neurodiverse students and teachers, it is going to be challenging to manage that size of space and that many students at any time.

But you know, we've got multiple screens. So we don't expect somebody to just talk at the front and be heard right at the back. We've got, you know, repeaters, TV screens, so that slides and what's been taught and what's been expected can all be seen by everybody in the lab. We have thought about it, but I will admit I do find that those spaces are quite challenging to be within. But yeah, you can design them so they at least a bit better.

And yeah your guys might have seen labs, but they haven't seen my labs, and they're very welcome to come and see my labs. I'm genuinely very proud of them. I really do think that there's a huge amount of thought that's gone into them to really think about the multidisbility diversity and access needs. And that's where you have to be at. You have to be thinking about this in all sorts of perspectives. But yeah, I hope that helps a bit.

Hamied Haroon: So just to just to add a little bit there, I totally agree with that everything Katherine said. So I think as well as research culture, there needs to be a change in teaching culture as well. And I think the problem, you know, when it when it comes to universities and money is that the cuts that are being made to staff, so there's less staff being expected to do so much more. You got 200 students there each in one super lab.

You know, as a, as a teacher, as a lecturer. You know, I think I would probably just scream and run out of class having that many students to deal with. But. But you know, there needs to be an appreciation or realisation that that's just too much to expect for anyone to do. Universities need to be careful as well because then that will affect the standard of the education, their students going as well.

You know, if we can't perform in those kind of environments, you know doing the job we're supposed to do, then how is that going to affect the students? So there's roundabout arguments on this as well, I think, and sorry, I hope that helps. Thank you.

Nicole Brown: If I may add something to what you two have said, I think there is generally you know like this kind of experience at the moment in higher education that universities are inviting more and more students and we have upped their numbers and have increased their numbers of students, but actually buildings haven't grown miraculously.

So you know there is this kind of fight for space everywhere. And I think in many ways that I think that's a good thing because it means that non disabled people are also moaning about the space, which is kind of quite helpful in terms of helping our cause for numbers. You know with people moaning about it. But at the same time, it's a bit of a double edged sword because I do think that that means that the disability case and cause gets sort of hidden away a little bit behind the more general generic need in higher education of being, you know, like a good place for, for work and for learning, which is again what Hamied you were saying earlier that disability falls behind race and gender equality and intersectionality now as well and you know that kind of debate around the buildings and the size of the rooms. I always worry that you know the disability aspect of it gets lost a little bit because people are moaning...

"Oh yeah, I also have a room that's not big enough for my students. "Well, it's not exactly the same issue though, is it? So I think there is a case to be made. Yes, there is a case to be made that we have.

Katherine Deane: No, it's always that challenge of it's always that challenge of what I can't even get in the room to have the discussion.

Nicole Brown: Yes, exactly.

Exactly, yes.

Rachael Luck: This is this is a just a comment from the side that this this is where over the years that people have been involved, some of the language in terminology and we still keep on coming back to this where we've gone from inclusivity to kind of inclusion and then even from the DDA to the Equality Act, I think some of these things where we end up having this kind of ranking of.

Or which protected characteristic we're looking at first. While, in fact, they're all equally part of this. I just wrote, just wrote a quick typo in the chat Katherine. Did you mention about the Wellcome Trust and their sort of assessment criteria?

We've spoken about it before.

About how some parts there.

Katherine Deane: Yes, so the Wellcome Trust I think are ahead of the game on this and they were genuinely shocked when they did that survey back in 2019 about lab culture. None of us that actually working lab culture were, but they were shocked that it is so toxic, so damaging and so you know, damaging not just to the people but to the quality of the research that's being done. So they have actually said that they're going to fund some work. Like I say, I'm part of the package of grant funding that they've just released, looking at improving explicitly research lab culture, they have also taken it upon themselves to change their policies and now have a decent bullying policy. We'll see how it goes in practice. But in in at least initially, it looks incredibly hopeful. They are saying we'll blacklist you. You will not get funding from us if you bully. And if that's proven, that's it. You're not getting funding from us. So that's a really large incentive to the universities to pick, pull up their socks on this area and make improvements. We all know who they are. We all are complicit, unfortunately by the structures in the bullying that occurs. We've got nothing that we can do to push back against them.

I've got bullies in my faculty that we know of that we've encouraged people to complain against, but who will not because of the risk to their own career. And we get it, totally understand it - damn, but it means we can't do anything about it because of how it's being organised. So we need to do that. But also I have put in again There's a Daisy guidance on how to collect demographic characteristics really well using language that is generally acceptable.

And looking at the detail that's needed to really unpick this sort of stuff. So I hope that helps Rachael.

Rachael Luck: Thank you, Sharron, I just wanted to do a check. Are there any other questions coming through the chat?

Sharron Jenkins: Yeah, we do. We do have. We do have a few. Unfortunately, I don't think we can get through all of them. One question for Fenella as she's asking, can we talk about accountability when the design of the building is not accessible? Is anyone held to account for that failure?

Katherine Deane: No.

No, there's not any good legal standards.

Their guidances are erratically applied and I really do hope that this is where the funders can come in to push for this, but no, there really isn't a minimum standard for buildings. It's not one that's actually enforced to any practical basis.

Hamied Haroon: Our disabled staff network challenge estates - invite them to a meeting and challenge them, and they just look at you with a blank face because they don't know what to say.

And you know their back up is that they've met all the legal requirements around accessibility, but they're just not good enough. And then they don't go far enough at all.

Katherine Deane: No, they're not aspirational enough. They're not practical enough. They've not been informed by enough, by disabled communities. And I mean bluntly, you know, I advised on a accessible lab up in Scotland recently. The reason I did that was no contractor could design it. They couldn't find a single contractor in the entire UK who was confident to design a universal design access lab. And that's atrocious. So we really are. This is why I wrote the guidance, because I literally was getting queries from the contractors as to -  "so what height do we put the light switches" at that level of basic stuff? It's out there, it's available, it's in the guidances and the standards and they still don't know it.

It's the Catapult lab in Edinburgh University. They now have a clean room for cutting edge pharmaceutical drug development and it's really cool. And I came in a little late, so it's not perfectly accessible however they have an incredibly good attitude, and so they're currently buying in a hoist because obviously in a clean room lab, you're going to transfer from your outdoor wheelchair to a clean room wheelchair and you need a hoist to do that for some people. And they're actually buying one at the moment. So they're just about to spend about £3000 on a really decent hoist to do that. So they've been incredible to work with and really receptive to the ideas. And seriously, if anybody out there is getting refurbishments or new builds done or anything or anything like that invite me up and let me give a talk and let me talk to people about the importance of this, and I will happily give advice on this sort of stuff. Yeah, you're going to have to pay a little bit for me, but I'm cheap relative to the cost of getting it wrong. So please, please, please do feel free to bother me. Feel free to bother Nicole and Hamied as well. We really want to get this information out there. We really want to instigate change. Do feel free to bother us.

Hamied Haroon: Just want to give a quick shout out as well to Jennifer Leigh who I know is on the call and Julia Serje as well at York University. Both of them are leading on programmes with The Royal Society of Chemistry around Inclusive Labs doing some brilliant work on that. So looking forward to hear what they find.

Rachael Luck: OK. So we're running out of time. We've got a couple of minutes left. Are there any other questions? Any other pressing points? We want to any other questions from the floor or any other final remarks, I can see Jennifer's response there. Any other final remarks from the panel of to be able to wrap up this session? This has been wonderful.

Nicole Brown: I think if it's OK, I'd like to kind of reflect on what we've talked about and I think you know it's in many ways disability advocacy work is quite hard work. It's very emotionally charged. It's very demanding. And you know, it's really frustrating and at many points because you kind of say the same things again and again.

You know I some of the recommendations I'm sharing now are things that I shared 2018, so you know, five years later, I'm still sharing some of the same recommendations because they still haven't been implemented so it is hard work, but at the same time I feel like all of us have to continue doing that 'cause if we don't, what what's the alternative? So no matter, you know what position you're in and if you yourself feel that you identify as disabled but you can't disclose, that's fine. Don't feel that you have to disclose. You can still be an advocate if you're not a disabled person.

You know, doesn't matter. You can still be an advocate. My point is, everybody can actually join the cause and join the campaign and try to be, you know, open minded and everyone can complain about that separate entrance for the disabled people. You know, even if you're not using it yourself, you can complain about it. OK. So I think it's something to reflect on that we all have. You know, that obligation in order to make it better for the next generation of students because otherwise nothing's ever going to change.

Rachael Luck: Yes, perfect. And that's an excellent way for us to be able to draw this session to a conclusion because it's giving an opportunity for more people to be involved. It's something that still needs changing now. So I wanted to thank the three of you. This has been wonderful and everyone for their questions throughout this session. And we've now got our lunch break and are coming back with you back for the third session to start at.

At 2:00 o'clock this afternoon. So thank you again. Wonderful.

Theme 3: Funding and Careers

Lindsay O’Dell: Good afternoon, everyone.

We'll start in a minute.

OK we'll make a start. Hi everyone, I'm Lindsay O'Dell.

Thank you for joining us at this conference exploring equitable research careers for Disabled Researchers.*. Just going to go over a couple of housekeeping information just for those who are joining. This afternoon and you can turn captions on in teams. Information's been sent to you in your joining instructions, so you should have that in an e-mail. We're a large group, so we're keeping audience cameras off presenters, facilitators and interpreters will be on screen as needed. We have two interpreters with us today. The Njal and Michael. Hi to the two of you.

If your preferred method of communication is sign language and you want to ask a question, please raise your hand in Teams and we will turn your camera on so you can sign your comment or question. Other audience members can ask questions by typing in the chat box.

OK. So thank you for joining us. Delighted to be introducing the third theme of the conference, which is focusing around funding and careers. We have two presentations. Solène Anglaret from Be Beyond Borders and then Petra Boynton, independent consultant. And then we'll have a panel discussion.

Well, we'll also invite in Robin Mellors Bourne from CRAC Vitae to join that conversation.

And to answer questions. From the audience. So thank you so Solène.

Going to Passover to you and invite you to take control of the slide deck, if that's OK.

Solène Anglaret: Yes, not really.

Lindsay O’Dell: I'll come back in speakers, two minutes before the end of your time just to allow you to kind of keep to time. So thank you.

Solène Anglaret: That's good. Thank you so much. Can you hear me OK?

Yes, great.

Welcome everyone. It's so lovely to be here with you this afternoon. I hope you've had a great morning so far, and welcome to this short presentation about adjustments or reasonable adjustments. We'll talk about the why the what's and the how. So let's get started. So a little bit about me to start with. So my name is Solène. My pronouns are she and her in terms of a visual description for you all, I am a white woman in her mid 30s.

And I have long light brown wavy hair and I'm wearing a black dress today.

So I was born and raised in Paris. Well, I was born in Paris, raised in Normandy, in France. I studied over there as well. And then when I was eighteen, I first moved abroad. I've now lived and worked in well, soon seven countries, because tomorrow I'm moving to Dubai. So this is my last event before I pack my bags. Well, actually, the bags are already packed, thankfully, and head out there.

I have 12 years of experience across a wide range of industries and very recently I was working for Innovate UK on the topic of disability and neurodiversity. Myself, I have lived experience of neurodiversity. I was diagnosed fairly recently, although lived with it my whole life as we do with BPD, which stands for borderline personality disorder and ADHD, which I'm sure you're familiar with and I'm a chocolate addict. Hopefully there are a few other ones out there?

And then that's on the side now is and I'll go into, this is a little bit about my career journey.

Someone is saying that they're eating chocolate right now. Or maybe it's what's in the other way. Anyway. Enjoy. But appetite. So I've put this slide up and I want to ask you if you look at this career path, what is maybe one word that comes to mind that you know that you know would summarise this kind of path. So in terms of the slide. On the left hand side, it's got lots of different roles that I've held over the years, you know, from sales to journalists to project manager to area manager to diversity and inclusion lead, et cetera, et cetera. It's got different organisation names, it's got different countries and then it's got the length of time anywhere between a few months to a few years. So anyone's got a word when they see that they think this career path is.

Everyone's more excited about the chocolate than the carrot puff. Fair enough.

Well, if anything comes to mind, pop it into the chat and I show you this multifaceted. Oh, but I like this one. Exciting, varied, changeable. You're a lovely group. That's a lovely words, rich in experience because a lot of people when you interview flexible, a lot of people. When you interview with this type of profile will say confused, confusing.

What is happening? Why this person can't pick one path and that's what I used to think. And Lindsay put non-traditional. Is, is, is what would be said? Yeah, exactly. people say it's unconventional. People say it's interesting, which I had to learn when I moved to the UK the first time. I felt interesting meant, you know, like, as in, you're interested. But actually, depending how you say it, it can be very different. Meaning, this is interesting. Right. And that's squiggly. I love that one. And that's what I used to think. What is wrong with me? Why can't I just stick with one thing? Why can't I just commit? And it took me years and years to start reframing this and to start what if there was nothing wrong with me? What if careers weren't meant to be these ladders? And this - you know, they could be more like winding paths and unique and correspond to who we are.

It took knowing about my own neurodiversity, took knowing about how I was wired differently to start unpacking all of that, and so that's just a little aside for all of you. If you're looking at your career the same way I was looking at mine thinking, wow, this doesn't make any sense. That's OK. It makes sense because it's unique, it's unique. It tells your story and all the twists and turns are really big skills and advantages that you can use along the way.

One thing that organisations can do differently right in this aspect is not to look at a profile like mine or a profile like anyone who's got a squiggly career or a diverse path, or all of these amazing words that you've put in the chat and not think about it in the way that we don't know where to put you. There is no one job description, and we there's no box. You don't fit in the box.  Is to flip the conversation and think how can we leverage your strengths while supporting you in your challenges and that's where reasonable adjustments come in and on the screen. I've put here the definition from the Equality Act 2010 in the UK. So it says that reasonable adjustments or changes an organisation makes to remove or reduce barriers related to disability and what I would add to that is that while we're sometimes able, which is amazing, that's what we want to do to remove or reduce the barrier in some cases whilst we're doing that, we can put in place a place additional support to navigate that barrier right?

So those are the three options that I think are important, remove, reduce or additional support.  So why reasonable adjustments? Why is it important? Why do we talk about this? Well, the first thing is you know it's the right thing to do, and this is where the definition like the difference between equality and equity comes in. So equality is when we treat everybody the same way. So on the left hand side of the slide, you've got an image with three people, someone really tall, someone of medium height, and someone in a wheelchair. They were all given two blocks to stand on to watch a game.

The tall person can see perfectly the person, the child, or the person of medium heights. We're seeing them from the back, so it's hard to tell the age, is able to see just about. The person in the wheelchair is not able to see at all because they can't get on top of the two blocks.

So the difference here with equality this is equality. We give everyone two blocks, and equity is when we treat people slightly differently or treat (I don't really like this word). But we enable people in different ways so that they can all watch the game.  And on the picture on the right hand side you've got now the person who is the tallest with their two boxes still the same. The second person, the shorter person with three boxes that they can stand on top of.

And then the person in the wheelchair has been given a ramp and this is it. We're treat... We're enabling people in slightly different ways so that they can have full access. It's levelling the playing field. And that's what's reasonable adjustments do.

The second important point. So it's the right thing to do is morally it's the right thing to do. It's also the smart thing to do, and I'm sure you've heard this a million times, but looking at this number on the screen, £249 billion, does anyone know what this number represents?  This number is the purple pound. A lot of chocolate. My budget and chocolate for the past 35 years. Oh, I've said my age as well. Whoopsie. It's the purple pound. It's the buying power of disabled people and their families in the UK per year in 2020, it's huge, right? And we're leaving so much of that buying power aside by having so many environments, workplaces, businesses, shops, etcetera on and offline that are completely inaccessible to a huge amount of people, right? One in, I cannot tell. Oh, sorry, I'm getting distracted by the chat. So we're leaving huge amounts of potential revenue and you know, benefits to the economy as well by not providing those reasonable adjustments. And then the final thing is inclusive innovation benefits everybody, right. If we put in place reasonable adjustments, if we take that equitable approach that will improve for everyone. And here on the screen you've got 2 pictures on the left hand side you've got these automated doors that you stand in front of them and they open automatically and on the right hand side you've got one of those doors that you need to pull to get in. Which door would you use A or B? The automatic one or the manual one? What about if you were in a wheelchair? What about if you were pushing a pram? What about if you were holding lots of documents of all your work for the past 30 years in your arms?

People are not even answering 'cause. They're like Solène this is obvious. This is so obvious. Hey, exactly. Thank you, Melanie. A right, A and A and a every single time. It benefits everyone, so reasonable adjustments make things more accessible for disabled people. Neurodiverse and neurodivergent people, and they benefit in the long run as well. Everybody. So it's the right thing to do. It's the valuable monetary also thing to do and it benefits everybody.  So now let's turn to what is it? What do we talk about when we're talking about reasonable adjustments? And if you have one in the chat, if you, if you have received a reasonable adjustment or if you have any idea of what could be a reasonable adjustment, put it in the chat. And I will look through them as well.

It's always good to know what you know has been helpful to people, whether it's you directly, a colleague, someone you know, you know, it doesn't matter. It's not about disclosing. It's just sharing you know some best practises things that are helpful and on the screen I've put categories right kind of headings. So you could have adjustments to the physical environment. So that could be we've seen the automated doors, we've seen a ramp. We could talk about dim lighting or about sound proofing of certain rooms, things like that.

We can have adjustments to the working arrangements, and I've seen in the chat people talking about working flexible hours, working from home, hybrid working. Absolutely. That's the working arrangements as well. The extension to the deadlines, the remote working. So all of these would be in the working arrangements. Then we could have adjustments in terms of policies and processes like introducing job share or reviewing our maternity and paternity policies, etcetera. Then around tools and systems and someone's just shared about, oh, that's more a communication style. Come back. Tools and systems will be assistive technology for example, and also the training and the support that goes with that. Sometimes we're like, hey, here's a new tool. Apparently it works for people who've got ADHD. Good luck with that. And I'm like, OK.

How do you use it and why? Why is it good? And how then other people benefit from it, right? So it's those two things together. And then in the communication style someone's put in the chat using e-mail instead of phone. So for some people it will be using phone instead of e-mail, right? It's having that open conversation about what is the best way that we can communicate with each other individually but also collectively as a team. What are people's preferences and how can they do their best work? And I'm sure there's more.

But these are some of the headings of what reasonable adjustments can be. Also to give you inspiration as well for yourself. If you're thinking about asking for your own reasonable adjustments. And then what do we mean like going a little bit further reasonable adjustments? We're looking at being as anticipatory as we can be. So there are three kind of I suppose you could say levels or steps you could be reactive, reactive means. Oh, we have someone arriving in our building. They can't come in. We got we got to fix the doors. We got to fix the access. Oh, you know, and it's too late. You know, the person's already there and they are facing a barrier and we're trying to like react to it in the moment. Being proactive is someone joining the organisation.

For example, you know I would join an organisation and it's like 2 weeks before and people go like oh, what should how can we accommodate you? Do you need anything which already is better but it's last minute and it's so individual, right? Anticipatory is us expecting that they will be disabled and neurodiverse individuals in academia they will be in research they will be in workplaces. They will be everywhere in life society everywhere right and by the way, it's the only community it's an awesome community that you can join at any time in your life. You know, so that grows, that number grows as well with ageing and all that. So how can we anticipate that, you know there will be people like me joining your workplace, you know, how can we get ahead of that?

So now moving to the how, finally and this is our last bit of the presentation.

How you know, how do we talk about this reasonable adjustments? Right, there are a lot of challenges in our way, right? It's scary to have this conversation. I used to think, well, I can't. I can't. I don't even know what I could benefit from. I don't know. And what will people say? Will this get in the way of my career progression? You know, I just. I just don't know what to ask for. I just don't know how to talk about it.

So I thought I would share a couple of things with you. One is, if you're in a position where you think I really could benefit from reasonable adjustments, I identify as disabled or neurodiverse, I want to have this conversation. This is a very useful framework to approach this conversation. It's taken from dialectic behavioural therapy and it's called dear man and DEARMAN the D stands for describe the situation. The E is express your feelings and opinions about it. A is assert yourself by asking for what you want.

R is reinforced by explaining the positive effects. For example, if you put in place this reasonable adjustment, it will allow me to be more effective in everything that I do and this is why and how etcetera M is for mindful by staying focused on your goals, E is for appearing confident, effective and competent, which means it's good to practise ahead of time and N is for negotiate and being willing to give and get and compromise right. Maybe the workplace is not able to meet you all the way from the very beginning, but maybe they can be a plan in place to get there, right?

So this is just a model and it's to help frame like if you're preparing for this conversation, just prepare two to three sentences for each of these points. And it's really, really effective. Like, it just helps so much rather than coming in and saying, I want all of this and you have to do it now, which sometimes can put people on the back foot. And the second thing is and the final thing is if you're a leader, this is your opportunity as well, right? It's not all the onus on the person asking for reasonable adjustments. It's also the responsibility of leaders to create safe spaces, to have conversations individually, but also as a team. How do we work better all together?

To offer and implement those adjustments and to really start to shift from a presence culture, you need to be there from 9 to 5 to a performance and a strength culture. What can you do? How can you do it? Let's do it together and to consistently call in or call out any behaviour that is different from what you're committed to, which is that inclusion and accessibility.

So thank you so much for, you know, listening to this short presentation, I'm looking forward to all of your questions if you have them. Start putting them in the chat and I'll leave you with this final quote, which is from Brent Brown. Vulnerability sounds like truth and feels like courage.  Truth and courage aren't always comfortable, but they're never a weakness. If you need reasonable adjustments. It's not a weakness. Go for it. It will improve your working life.

Lindsay O’Del: Excellent, excellent. Thank you so much.

Solène Anglaret: Thank you so much.

Lindsay O’Dell: So we'll have time for questions and comments, but for now, we're going to move over to Petra Boynton. Who I'm hoping is with us, Petra. Are you with us?

Speaker 1: I was here. Hang on. I don't know where she's gone. Try to find her again.

Lindsay O’Dell: OK.

Speaker 1: OK, Petra you should be able to take control now.

Lindsay O’Dell: Thanks.

To welcome Petra. Hopefully. Yeah. There you are.

Petra Boynton: Hi. Hi.

I might need some help driving this ship, so you might need to help me with my slides as we go on. Thank you very much for having me. I'm Petra. I'm a middle-aged white woman. I've got long, blonde, dyed hair and I'm wearing a white blouse with flowers on it.

The nice thing about being the last person to speak is that everyone who's gone before you has always made brilliant points. Much better. So I don't think I'm going to tell you anything that you don't already know or probably haven't heard today, but hopefully it will sum up what we're thinking around this whole event and bring in the whole concept of academic mental health too. Could I have the next slide please?  So what do we know? There's a high level of dissatisfaction among students and staff in research organisations and universities and by staff. I don't just mean academics. I mean technicians, administrators, cleaners, caterers, anybody who's doing jobs in universities, most of whom are routinely left out of conversations about academic well-being and welfare. And that might be something we return to either in the panel discussion. Or at another event.

There is reported increase in mental distress, particularly in young people, and that's true outside universities as well. But inside universities it's especially the case for post graduates. It's largely due to poor funding and bad supervision or inadequate supervision. But also there are other factors at play around sort of life commitments as well. Disabled postgraduates are disproportionately impacted, but largely underrepresented in conversations on this. At the same time, we've got cuts everywhere to external support services and charities that previously would have offered us help. Or we could have signposted people too, but simultaneously there's a massive demand for them and that's led to the expectation that schools, colleges and universities now become a replacement for mental healthcare and you might have seen this expressed with things like people saying every PhD student should have access to a therapist. That makes me wonder what we're doing to every PhD student that they require access to a therapist. And I think that's something again we might return to in future about what is the role of research organisations in relation to mental health. Academic mental health has always been there. It's brought you an interesting topic for a long time. Many of us have been working in it in a long time, but recently, and particularly during the pandemic, it's become a big topic, a hot topic, and that's led to lots more research being done on this, some of which is excellent, a lot of which we've heard about today. And some of which is variable in both quality and impact.

I think there's a lot of goodwill underlying the research and much of it is driven from personal experience, but the dominant discourse really in this area now is coming from fully funded STEM post graduates who are young, white and residing in either the UK or America, all of whom, because of the research they're sharing, indicate they undoubtedly need a lot of help and support. However, they are not representative of the whole global picture.

Of academia and of mental health. Oftentimes their preferred method of research is to use surveys or storytelling, but they haven't actually been trained to use those. So again, there's issues around support for people doing research and wanting to share messages that could easily be dismissed if the work itself is not particularly robust. And interestingly, in all of these conversations about academic mental health, disability is noticeable by its absence.

There are solutions. We've got lots of solutions of this going back years back, years and years and years. Sorry. Could I go back to the previous slide? Thank you.

And the solutions are ignored for the most part, in spite of, or perhaps because of a legacy of work around inequalities, access and harm, and it's important to note that the majority of that work that was being done in the past was driven by Minoritised scholars and so much of the research and practise that we have is depoliticized, ignores diverse experience and needs, and doesn't hold institutions accountable. And it's really challenging, I think, for a lot of people who have lived experience or have been working in this area for decades who were ignored or even shamed in the past for doing this kind of work who are now find themselves ignored again because there's a kind of new approach to it, which is talking about mental health in a very nebulous way and not criticising institutions at all. So if I could have the next slide, please

This isn't actually a solution in case you were wondering, this is what's going on inside universities, and it's deliberately chaotic. I do have an easy read version if people would like this in a kind of standard list, but I've put it like this mainly because I want it to feel overwhelming because it is overwhelming. But I'm going to summarise the slide for you now.
Some departments and institutions are working in a positive research towards a positive research culture, and lots of us as individuals are doing our very, very best and we've heard that today. But in most universities globally, there are systemic inequalities and particularly in the global S actually there are major inequalities. And again, this just doesn't get discussed when we're having conversations about academic mental health or disability more widely.

So the environment in many universities and research organisations is made toxic by the fact that it is competitive, extractive and precarious, and sadly, I think that unpleasant element often trickles into the sort of academic research and mental health research and activism on this possibly to do with scarcity of resources, but also because of trauma that people are carrying. But it's not always a comfortable place to be, and I would imagine its training, supervision, equipment and funding is inadequate. You don't need me to tell you that. And my theory is that if we improve these things, the rate of mental distress would probably fall. But it allows a culture of blame, bullying and neglect to thrive. So disabled people are much more likely to be the target of this. Particularly, they have a visible disability and they are not centred in policies to address harm, especially around bullying and harassment. And that in turn leads to loneliness, isolation. And feeling like you can't complain, but also mistrustful as well. And in many cases it's probably safer not to complain, and that's a real indictment on the situation. We continue to be in and all of this worsens mental distress or causes mental distress, and it disproportionately impacts upon or harms disabled students and staff, and also their dependence, bearing in mind lots of us are living in families where everybody or other people is disabled as well. So if I can have the next slide, please.  This makes us very, very vulnerable, and we've heard a lot today about intersectionality, so I'm not going to go in as much detail about it as others have spoken of, but I wanted to think about the major theme that's running across the whole of this slide, which I'm going to summarise for you and the major theme here is isolation. So be that if you might be an international student or staff member, a refugee or asylum seeker, maybe you're doing field work, you're on placement. You're the first generation to go to university. Or you're part of that really awful culture that if you want to. Do well in academia. You're endlessly moved for work.  That is extremely isolating and makes people who are already vulnerable more vulnerable, but also further exclusions occur in academia, so students and staff might well be excluded because of their ethnicity, their sexuality, their age, their gender, their faith, their health, their income, their visa status and many more. And you notice in this I didn't mention disability because although disability is also part of that vulnerability.

The way it's often approached is either not to be discussed, because these other issues are discussed first, or it's discussed in isolation from them, and we know through decades and decades of activism that of course all of this stuff is collect connected. They interact to intersect, and we can't think about it separately. But university responses, if there are any, tend to operate on a kind of one size fits all model and academics, particularly those at very senior level, are often quite angry and obstructive about the idea that minority groups should have specific help aimed at their multiple and different needs. Interestingly, I put this slide up quite a lot in training. I do, and it's the one I know it'll all kick off on. Everyone's probably been quite nice and smiley until I show this one and then somebody more than one person will normally start saying we're all the same. If you fix it for everyone, everyone will be fine and it's normally an inroad to then you know, more bigotry that they want to voice. We need time, expertise and money.

To truly attend to mental health needs and welfare of students and staff. But there is enormous resistance to doing this, and as you can see, this is a huge job. This is not something that we can just do after a quick weekend course or an online module.
If I can have the next slide please.  Nothing will change if it's the university's research councils and other educational institutions who cause or worsen our difficulties. We welcome academic mental health discussions. If we can use it as a social media opportunity or to tell parents arriving at open day that our pastoral care is amazing but actually pastoral care and teaching are undervalued. We have overworked and untrained staff dealing in unprecedented situations with not just what's going on in university but the cost of living crisis.

Climate change, war the pandemic have all left to us having to deal with things that really we've got no experience of and haven't dealt with before.

It's exhausting for everybody, including those who I've mentioned here, who are the ones who have the most power to change it. And I think in a current climate, everyone feels so embittered and angry and brittle and broken, it's really hard to have conversations about this. So on to the next slide, please. This is my cat Melody, who some of you will know. Melody is a tortoise cat and she's lying with her paws up in a relaxed way and it says on the slide find ways to comfort yourself. I'm not going to talk about that in depth here because I know I'm going to run out of time, but I just wanted to flag that mainly university responses to academic health, some of which are a brilliant and fantastic, but most of which are done spontaneously, tend to be.

Favouring commercialised individualised Wellness messages from either highly paid consultants or a quick Google search. You get cheap Russian short term quantified interventions for mild to moderate anxiety, which is never referred to as a disability, and basically there's lots of gestures. You know, the mindfulness workshop, the motor, you know, a helpline, a well-being webinar something like that. And I think what's interesting here and I know I'm probably running out of time. Lindsay is that we have got a whole load of stuff going on where people are trying to raise these issues but what tends to happen is there's a bit of bigfooting in large organisations come in and they like take the ideas.

They present them as their own. There's only either an expensive PR agency behind it.

It's not particularly good methodology. There are bold promises to eradicate bullying and transform culture or centre well-being, and everyone's shocked at the findings that they had no idea there were problems like this, and we repeat that again and again. As Catherine said earlier, we're still waiting and that brings me to my last slide, which I hope I've got time to do very, very quickly.

Lindsay O’Dell: Just quickly and then we can open up. Thank you.

Petra Boynton: I would really quickly I was very tentative about showing this because, you know, obviously it's we've talked a lot about disclosure in this session. I recently had a diagnosis and I wanted to put up some of the things which actually on this slide has come out really badly. But on my slides that was amazing. But it's the things that people have said to me around.

Being challenging the photo shows me on my first day of school. I'm clutching a posy wearing my smart green uniform, looking very nervous and I am a UDHD and dyscalculaic here and I still am now, but I didn't obviously have words for it then. I was also chronically sick in between that period and now.  But the words used then about being defiant and difficult and challenging and a pain in the backside are still used. Now. When I'm saying to people I just want to change this stuff, I just want to make our teaching better. I just want to improve pastoral care. I don't want you to bully anymore. Please can we stop it? I won't go into things about disclosure, but I think that's something we might want to talk about, but also about the impact of diagnosis in later life and that kind of pressure that the only way we can have these discussions now is to tell a tragic story. So if I was doing this for a funding Council, they'd only want the picture of the sad little girl so everyone could feel sorry for me. And then we could all go home and do nothing.

So I hope today we actually do a bit more than this because there's lots of little girls like that and little boys and children who don't know their gender yet who are having this conversation and being told this today, we can't discuss education at our level without thinking about schools. Thank you very much.

Lindsay O’Dell: Thank you, Petra. That was excellent.

We've got time for questions and also to bring in Robin, Man Osborne, who's joining us for the panel discussion. So we have a question for our panel, which I'm trying to read on my screen.  Which is around UK or I funding strategy and it really relates to the framing at the beginning of the conference about?  The very low levels of funding and access to funding for Researchers with disabilities through those funding schemes. So the question for the panel is around their thoughts on that and how we might address that right now.

Panel very happy to start with that. But also to open up to to questions about your presentations and also the theme in general around funding and career and support.

I don't know who wants to start.

Analysts.

Solène Anglaret: Feels like Robin, you've just joined us. So we haven't heard from you yet, feels like.

Petra Boynton: Ha ha ha.

Lindsay O’Dell: Ha ha ha ha.

Robin Mellors-Bourne: Right. Hello, good afternoon everybody. I have to confess first that I wasn't able to join you this morning, so forgive me if things that I say have already been highlighted during the morning sessions, but that's just a function of a busy life, but very pleased to be here. And I hope that I can contribute perhaps a slightly different angle from some of what you've been hearing today because really I'm a researcher about higher education research and for my since I've done a lot of projects where I've analysed the sort of data that's been collected about Researchers and their characteristics. And so I'm familiar with some of the data that Lindsay has just alluded to, which essentially cutting a Long story short says that.

Disabled scientists, disabled researchers are underrepresented generally in the academic population at all levels. Especially so at senior levels and where Lindsay was quoting particular statistics is around the key element. I suppose in research which is really grant making.  And the fact that although you know one of our biggest funders, UKRI now does publish statistics on the diversity of its the people to whom it gives awards.

That again shows that there is an under representation of disabled researchers within it. You'll have to forgive me if I'm a bit of a data nerd in some of these things, but when I looked at the exact source that Lindsay had had pointed out. It's interesting in two ways. One is that for example, UK or I had published. The number of awards given to. If you like fellows, that's early career researchers and looked at award making for those who classified as disabled and others, and there was a clear difference. On the other hand, there did appear to be some very recent improvement, quite substantially when you actually look at the data, in reality, you realise just how small the numbers are of disabled researchers receiving these grants. And it and the trend is kind of really at risk because they round all their numbers to five. If that's a convention you do in in the world, we're inhabiting here. So actually, if you've only got 10 researchers receiving awards in one year and the next year, you've got apparently 15. That sounds like a big increase in reality because everything is rounded to five. It could actually be only one more person. And so the data, to be honest, is really not very sound. But going back to the actual question, what's behind the under representation? Perhaps the grant making and I guess it's a whole load of things that you've heard about today and I'd like to focus a wee bit more on.  The kind of funder angle, I suppose. And I think part of this is comes back to what Soleim talked about in terms of the word she used as anticipatory attitude towards adjustments. And I think one thing the funders could well change, and we should push them to change is to be much more overt.

In sharing what is possible, because I think a lot of people in this world simply count themselves out of possibilities because they think it won't happen and it can't happen. And I think that typically what we tend to see on a website is when you're applying for a grant, it says if you want to find out about adjustments, click this button. So it's up to you to find out and decide well what might be possible. It's a very sort of passive process on the part of the funder.

Contrast that with what it might be like if the funder said come and see what we might be able to make possible. And I remember if I can just share 1 anecdote and then I'll stop with that. I I was in a project a few years ago talking to a very, very senior scientist in the leadership team, and I won't name them of the welcome trust.

And I said to him, because we were talking about disability and access to their funding, and I said to them, are you telling me that if you've got a, a grant scheme where you give, let's say, £1,000,000 out to an early career researcher for a long term project?

If a disabled researcher asked you for 1.2 million instead of 1,000,000, what would you think I said? Well, of course we'd fund it. That is written down if you are.

And what we need, I think, is more examples, more case studies of what is possible, and we need the funders to articulate far more in a far more anticipatory way, what could be possible. And I think that actually is part of what's holding this housing back. Anyway, I said I said more than enough.

Solène Anglaret: Yeah, just wanna react to that. Thank you so much, Robin. I did a lot of nodding there.

Lindsay O’Dell: Thank you.

Solène Anglaret: The last part around the whole anticipatory welcome, and this is something that definitely is being worked on. So I, like I said, I was working at Innovate UK the last couple of years and so innovate UK has introduced, for example those the reason about adjustments in partnership with an organisation called diversity and ability which is a social enterprise, based in Brighton and basically providing that additional support, but for now it's very much looked at, OK, this is the process. This is the system and then where we know there's lots of barriers. So let's give you a little bit more support on the side. I think we really need to put our thinking caps on and go like how do we change the actual process and the actual system because there are barriers absolutely everywhere throughout the funding process. You know, you just look at applications, so text heavy, if you have dyslexia like how are you even getting started and it's and like I said before about, you know when we change something with that inclusive innovation mindset, we help everyone, right? Because it's also for people like me who have English as second language. You know it the fact that everything pretty much is written form and it's very, you know, academic language that is a huge barrier. So the barriers in the funding process, there's barriers in the assessment in the way that are being assessed and someone put in the chatter question about, you know, how many assessors are people in the funding bodies, have disabilities are disabled, you know, identifies disabled and that's a very good question. You know, we need representations within the places where those decisions are being made. And then even if you do get funding, then the reporting that you have to do to justify that, you got the funding is also.

Very inaccessible and very, very challenging. So throughout that funding process, there's needs to be a lot of process and policy and system change. I think another thing is and you touched on that a little bit is you know we need to see to think that we can be like I used to look up. I remember working and this is in the private sector. So you know the examples are everywhere. I used to work in Australia and I was an area manager looking after the Melbourne office and I would look up and they would be 5-6 depending on the time white men above in the ranks and therefore I thought it's impossible, I can never be a director. I can never be a senior director. I can never be AVP because nobody looks like me or thinks like me up there. And I think that's something we really need to address, like disabled people and neurodiverse people won't see academia, innovation and those funding opportunities as an option until we start showing visible role models, not in a kind of way, but in a very inclusive way and across all industries. Again, pet peeve of mine. We seem to think that, oh, you have BPD and ADHD, it means you're going to be doing research and innovating in that space.

Maybe I want to study sustainability or culture change or something else, right? So not to put people into boxes. And finally, I think like everything we need to take with a pinch of salt like we don't know how much disclosure like when we look at 1 to 3%.

How many people are comfortable disclosing to you? KRI. Hey. Like, I identify as disabled, although it's anonymous. Although we're, I think improving a lot. The way we ask the question and the way data is handled and transparency and all of that, there's still and you know I would be the first one like new employer. I'd be like, I'm not telling them, you know, especially for invisible and hidden disabilities like what is the incentive to disclose what is the benefits like do we want to? Is there a risk like all of these questions come in. So I think normalising the conversation around reasonable adjustments, ways of workings, communication, preference introducing those access passports. All of these different things, like making flexibility in the norm, talking about performance beyond the 90 fives you have to be there in clocking clock out. This is another piece. Anyway, I think that will really improve those numbers, and I think we should be absolutely alarmed by those numbers and there's things that we can do that don't cost any money and I'm sick of hearing people say that. Oh, yeah, but reasonable adjustments are really expensive. No, just send me the agenda in advance cost you nothing.  What do you think? Petra.

Lindsay O’Dell: Oh, is Petra frozen?

Solène Anglaret: Yes, I think so. In a very pensive.

Lindsay O’Dell: Very pensive, but she was just listening very intently to the conversation.

Solène Anglaret: Yeah. I think, Robin, maybe you can relate, but I just get really excited and animated when I talk about these things. And I'm like, have I talked for this long? Sorry.

Lindsay O’Del: It's a technical no, you haven't. And the conversation is really rich and brilliant. There's a technical issue with Petra's camera, which I'm hoping we're just sorting out.

Lindsay O’Dell: So we'll give Petra, yeah. Robin will bring you in.

Robin Mellors-Bourne: If I can, just if. Shall I just comment on one thing that Solène just said and that's really about the lack of visible, if you like senior case studies? When we did some analysis of declared disability of different kinds at different academic levels, it's quite interesting to compare the profile with sort of seniority and with age through an academic career compared with other sectors and other jobs, and generally speaking in most of those.

The older and more senior you get, the higher the incidence of disability or some sort of health condition or something in academia, it's the other way round. It is reported lower and lower. The high you get up. So based on the analysis we did of the of the UK workforce, about three or four years ago admittedly. Almost no professors who have any mental health condition. That's clearly not true, but that's what they declare.

Petra Boynton: Hmm.

Robin Mellors-Bourne: And that's in turn suggests that there are really no if you like exemplars or case studies of people at very senior levels who have been successful, we might say in a in going to those sorts of levels who are who have managed to, you know, who have managed conditions and so on. And we therefore need some of those people to come clean. And promote the fact that you can progress in those sorts of ways if you want to, and still, you know, have these disabilities or conditions and manage them and the environment can be such that you know you can progress like that.

Robin Mellors-Bourne: Otherwise, what we will see is propagation of what we see now, which is a disproportionately high number of disabled academics who are on teaching only contracts and so forth.

And disproportionately low, who are on the research only path that tends to be considered as the blue ribbon root. You know the premier root to progression and I suspect that actually having more examples of what's possible will help.

Thank you, Petra. We've got you back on camera, but you were paused in a very a very elegant way.

Petra Boynton: Oh, good, that's a relief.

I just wanted to sort of add to what everyone was saying. I think a lot of this is about instruction and it comes back to my sort of ongoing campaign about getting better instruction for all sort of academic skills. But the way that we're taught about, particularly applying for funding, but it's always a career progression is it's a sort of mysterious process that you do experientially. There's very little specific training on it. And if there is training, it's a one off thing. So there might be like a webinar or an afternoon where you get told about this or maybe your institution does something but it's not continuous, so for a lot of people they aren't going to process that. And even if you have, we all know from learning a new skill that a one off class doesn't master that skill. So I think we need ongoing instruction assistance to actually do it and that not being seen as a kind of drawback in many institutions. There is help to put funding together to put funding bids together, but you're more likely to get that help and support if you're already getting lots of funding bids in. So if you are somebody who's fairly new to this or you haven't been successful before or you only want a small amount of money.  You're very unlike you'll be at the bottom of the pile then, and the more you ask for help with it, there's a whole thing I think of us needing repeated help.

That that's pathologized that if you do that, that's like where you're why can't you do that? I told you that yesterday or you've had the form. Just get on with it. And if you then don't get it, it's kind of your fault. I think we also ignore the amount of energy and time this stuff takes to actually put these things together, most of which is such a waste of time. I mean, let's be honest.  Most of us don't get this funding and we spend hours and hours and hours putting these things together, but then there's also, apart from the exhaustion that many of us just don't have the spoons for the rejection I think we're supposed to gloss over that as if it oh, well, you know, and it's always the people who've had these loads of grants who, who they just didn't get a couple who are saying to you, oh, you just have to learn to deal with it. But they aren't dealing with it because they got the funding and you're still worrying about your career. So. And if, again, if you react badly to that, that somehow being at fault, so I think there's a whole issue of that and I think just going back to the disclosure point.

It is so risky and I'm kind of conscious that that, you know that slide I just showed, I haven't told anyone before really. I mean, a couple of people know, but I haven't told people. So I'm interested to see, am I going to be treated differently? They've got enough reasons to dismiss me. You know, people aren't listening as it is. Does this make it worse? I think it probably does, actually. I think if you are already a nuisance and then you become more of one.  Pointing out what's wrong and how they can do it better. In my experience it's Gen. It's not. It's not usually said, welcomed. It's they don't say thank you. That's brilliant. Come in and help us do it better. You find yourself sidelined or even in the case of some places labelled as a as a pain, you know or a difficult person or not a proper academic. So I think we have to be careful as well.

Lindsay O’Del: Yeah, but if I can just jump in there. Yeah. Petra. Really. Yeah. Really.

Recognise that and think that's so important and thank you for sharing that that slide and there's lots of really powerful comments in the chat and we'll come to the audience.

In a sec, but yeah, to really pick that up, so it's a couple of quick things. So one is there's value in communities like this and to resist that individualization and pathologization and try and kind of hold strength in saying stuff collectively - I genuinely think that that's a way forward and also the thing that I'm really worried about is around pipeline.

So I'd I'm kind of reflecting. So I set this up by saying oh, UKRI stats, but actually there's such a significant challenge with pipeline for disabled people through the educational pipeline before we even get to PGR, so to doctoral level before we even get to.

Even if we felt that academia was a place that felt comfortable to even get a foot in the door for that, in order to get to the point of being supported or not, to get grants and so on. So for me that data is at the end of a really problematic pipeline. It's indicative and it needs to change, but actually there are problems all the way through that that pipeline.

Lindsay O’Del: Solène, I'll come to you and then I think we've got some questions in in the chat.

Solène Anglaret: I just wanted to.

Say Petra, thank you so much for, you know, sharing with us today. I definitely can relate to the first time that you do that in this kind of forum, you don't know who's watching, it's really vulnerable. And it's really scary. And it's really brave. So yeah, I just want to say thank you for choosing to do it here. That's really amazing. And I can totally relate to what you were saying about when do you. Because you're stating the problems because also your brain is wired differently and is there saying there's a problem here, there's a risk there. Be careful. You can do this better and then suddenly it shifts and you become the problem because people are uncomfortable with. You doing that and I've experienced the same like in the workplace and it prompted me to go freelance full time and hopefully I can make that that work. But yeah, I that's why also I want to change this right I want to change this in every aspect, in workplaces, in society, in communities, in academia because.

I think that when we start to really tap into everybody's different brain and functioning and we actually say, hey, you can see all the problems. This is amazing. Come into the room and tell me all the potential solutions and that's what Lindsay, you did brilliantly just now, like identifying even more. OK, the barriers are early and here are some solutions that we can put in place, you know, looking from the very beginning, right, how and that's what we need to do. We can't just keep bringing solutions on the surface because that's like treating symptoms. If I just keep going, oh I have a pain here and I treated it but actually there is a bigger fundamental problem then we're not going to make a difference. So stating the problem, stating the barriers is so important to then start to go like OK every step of the way of education. Here are all the barriers. Here are the potential solutions. This is what we can do very quickly. Quick wins. And this is what we need more time to implement. So that exercise I think is super important.

Lindsay O’Dell: Great. Thank you, Sharron. Have we got any questions in the chat? We've got lots of very moving comments.

Sharron Jenkins: But lots of very moving comments.

Yes, we do. We do have a few questions. What recommendations? What would your recommendations be for one top action for 10 days to take away back to their home institutions?

One that stands out is for the panel.

What would your recommendations be for one top action for attendees to take away, back to their own institutions?

Solène Anglaret: I can go first - Talk!.

For me, it's half the conversation. So it's talk about this topic, you know, bring the topic and say, hey, can we have a conversation about accessibility and reasonable adjustments in our institution and just talk to people about, you know, what are their ways of working? What are the, you know, preferred communication styles? We don't need to label anyone. We don't even need to label ourselves. We don't need to force disclosure, but we can start having that open conversation about inclusion, accessibility, and reasonable adjustments all together. So that would be my prompt for everybody.

Lindsay O’Dell: Other panellists?

Robin Mellors-Bourne: Well, if you want a recommendation from me, I'm possibly going to give two. Actually, if I may.  One is just ask.

Is one of them, which really comes back to Solène's issue of talking more and the other one, I think is there's a lot of work going on actually in research at the moment about inclusivity in selection and at the heart of many of the things we're talking about for progression it comes back actually to who gets selected  and who applies in the first place and so on, and so there is a lot of work actually going on in this area at the moment.

I think it will be quite healthy if everybody thought put themselves in the shoes of a person who is doing the selecting and thought about how would that work? What would be my ideal process? What would be the fairest possible way to do this?

I think I think academia is a long way behind some other industry sectors in thinking about how this could work. And I think if everybody just thought about it in their own position.
If I was selecting somebody, if I wanted somebody to apply for a job or a position, or grant whatever.  What would I do to make it ideal? And I think if that if all those thoughts were combined, we could move all this forward.

Lindsay O’Dell: Petra?

Petra Boynton: I was gonna say respect and safety first and foremost, 'cause we can't go back and share anything if we don't feel that that will be heard and there's so much at the moment where we're expected to come up with the solutions where we don't know what's going on and tell somebody and ask for help and then the help will be given. So I think we have to have places that are safe. So they've got to make the place safe. Stop making us do all the work and I think tell us how things work. I mean, a lot of this requires us to know
how everything's going on? I think the hidden curriculum, particularly here, is enormous that if we knew how things worked, actually we're we can do it. There's an extra disabling layer for all of us that we actually half the time haven't got a clue, you know, I mean, the nice thing about this conference, it's unusual for most conferences in every single thing we've done, we've been explained, you know, when to be here, what to do, how everything's working. That often doesn't happen at most events, you kind of rock up and try and make things work. So tell us,  you know what, you know. What do you want us to do? And how do you want us to do it and give us the help to make that happen and let us shine.

Lindsay O’Dell: It's great. Thank you.

Sharron, any other questions?

Sharron Jenkins: Yes.

We have a question here again for all the panel, what do you think about the internal demand management before the research Councils get an application?

Robin Mellors-Bourne: I'm gonna jump in because this is one that I'm really interested in and that's partly because we are just finishing a project about exactly this situation. It is specifically about one very big and important fellowship scheme and we've been asked to don't look for good practise amongst internal demand management by universities leading to the applications for this fellowship scheme. So this is really where the university runs its own selection process, shortlists the number of candidates and then puts those forward to a particular scheme grant scheme, closure, scheme, whatever.

The research we've done on it has been a real eye opener for us and I hope that the report that we've written will be openly published because I think it shines a light on just what goes on in lots of universities and just how chaotic uncontrolled, usually well-intentioned, it is and how much better it could be. And so I think it is a question where, you know, no matter how well-intentioned, and how much a Research Council itself might think it's being inclusive in what it does. If you've got demand management within the university in the first place, which is not in that way at all, then then the whole thing is derailed.

So I hope the report, although it's only about one particular scheme, will be widely. Well, I hope it's published. For one thing, I think it probably will be and I hope it really spawns more work in this area because there is so much further to go. So it's a, it's a massive issue currently.

Lindsay O’Dell: Solène, Petra. Is there anything that you want to add?

No. OK.

Just picking up on that, I want to then and this goes back, I think to something Katherine said this morning about the role of research funders in using their leverage, so if there are things within universities that are actually operating against kind of equitable, equitable development of disabled researchers that actually the research councils could interrogate, that so is it something then? And I don't know, Robin, if this is part of your recommendations that actually the research funder then asks, well, what are your processes of ensuring equity to access to these fellowships within the university selection processes themselves, so actually the funders assure themselves that actually that's been done and I know partly that's a naive kind of view but it's a start? Solène - do you want to come in on that- Robin first and then Solène.

Robin Mellors-Bourne: If I could just, I'll go, I could reply directly on that very issue. I mean the project was partly enabled by the fact that the funder had introduced exactly that requirement. So that in addition to internal demand management.

They had to write a statement explaining how they had been inclusive in that demand management. The quality of having read 150 of those statements, I can tell you that there is a pretty wide variety of practise from the absolute appalling to the mediocre. And I wouldn't rate any of them as much higher than that. And then what we did was from there to go digging more deeply across the variety of universities. So it was, it was a really, really intriguing process and some people I hope will be quite embarrassed when they get to read the report and compare the statement they wrote.

Lindsay O’Dell: Thank you, Solène?

Solène Anglaret: Yes, this is something that's is definitely talked about and started being implemented. So for example, at Innovate UK for the latest competition that was ran Unlocking Potential. That's it, that's what it was called there was that question in the application process of you know how, I can't remember the exact wording, but how do you embed equality, diversity and inclusion in your practises. So that was part of the application and how will you be a role model if you were to be selected for that grant and from memory it was a video question actually that one as well. So not written format as well. So there's things that are being experimented with and that's for people applying for funding. Then you have the case of people who are being funded, right. And I totally agree with you Lindsay. I think you said oh, maybe it's naive. I don't think it's naive. I think definitely we are funding imagine URKI or Innovate UK we are funding you as a business how will you have a positive societal, environmental and economic impact in all the work that you do? And it's absolutely a question that needs to be asked. And I know that innovation is working on a pledge so that every single company entrepreneur, innovator who is funded through this process will have to commit to equality, diversity and inclusion actions and have an action plan. Now my question behind all of that, and that's what Robin said, right, the quality of the answers, etcetera.

Solène Anglaret: There's a real question that needs to be asked and I know that Innovate UK is working on a pledge so that every single company, entrepreneur, innovator who is funded through this process will have to commit to equality diversity and inclusion actions and how an action plan.  Now the question behind all of that like, and that's what Robin said, theirs the quality of the etches like how do we actually audit this? Because you could write the most beautiful speech as we all have heard it before. You know, I'm so committed to all of this, but actually do nothing and have a team of all, you know, the same non like no diversity like I was going to say all white men, but I don't want to get any enemies from today No it's - apologies.

Should I apologise? I mean maybe not. I see Lindsay and Petra. No, no, no. Go for it.

I get in trouble sometimes, but exactly like then behind the scenes, you know, it's not a diverse team. There's no real commitment to accessibility and inclusion behind the innovation that is being put in place in the way that it's done. So I think you know there is a piece of work there as well to think about how do we and I know it's another layer of process as well. So it's like do we really need that? But at the same time, yes, I mean we do need to check and audit that these practises are actually being put in place because again

We'll have better innovation as a result anyway.

Lindsay O’Dell: Thank you.

Probably time for one more question, Sharron.

Sharron Jenkins: Question from Christoph and he's asking how can we keep the academic identity from being drowned by the diversity or

Solène Anglaret: I'm sorry I don't understand the question.

Lindsay O’Dell: Perhaps Is Christoph here.

Sharron Jenkins: Is Christoph here. Can you put your hand up please.

Lindsay O’Dell: I think he's here.

Speaker 1: Christoph can now ask this question.

Lindsay O’Dell: Yes, great.

Christoph?

Christoph Trüper, Goethe University: Good evening. Thank you for having me here.

Well, I was wondering, we are talking a lot about diversity today and the only categories we are really addressing are the ones addressed in anti discrimination policies. But surely there are deep academic faults and commitment and clashes of commitment going on, like between freudians and other psychologists and stuff like that. So I think this is a diversity issue too, to have a diversity of work views on the panels. And I'm wondering if we highlight, we put so much emphasis on anti discrimination categories. If we then drown these work view categories or let me put it another way. If well, I am actually am a wheelchair user and I'm a philosopher so if I am on a panel do I have to select a person from the opposite school just because he or she is disabled.  Or can I go with my metrological commitments?

So I think the them academic identity is more multiplethan just reducible to this anti discrimination categories and I think we need to address this more and also in the way we talk in on conferences like this. But apart from that, it's been a great conference so far.

But I think we need to not to lose focus on that, the chosen the chosen academic identities.

Lindsay O’Dell: OK. Thank you, Christoph.

Panel I'll come to you in a in a sec if you want to respond to Christoph's comment, I think there is something really important about disciplinarity and academic identity and the way in which research careers, engagement and research careers do shift with disciplines.

And the different challenges that different disciplines offer. So we've talked a fair bit stay around STEM.

I've become slightly obsessed with geography field trips and pipelines. So there is you know there's obviously something about disciplinarity that is at play and I think there is also something and this was a conversation I think we had in Panel 2 around identity and academic identities and where people choose to locate themselves.

Because, Petra, this goes I think very much with what you're talking about that universities need to be safe and comfortable places for us, and they're often not and where they are, it's often where academics are found and other staff have found pockets of communities that work for them.

So Christoph a very a well made point. Thank you.

Panel. I don't know if you want to respond to that in the last couple of minutes.

Solène and then Petra.

Solène Anglaret: Well, actually, I was gonna quote Petra because I was a little bit surprised by the comment because I think Petra's presentation addressed this point really, really well around the intersectionality of identities. And absolutely, like, there is diversity within each of us as individuals as well. Right. And we are like, I'm a foreigner and a woman and neurodiverse and I have a higher education and right. I live at the intersection of many identities, some of which make me marginalised in the current setup as a society, and some of which make me privileged in the current set of society. So I thought that we addressed that pretty well and especially in the reasonable adjustment session like again I there was nothing specific about you know apart from that quote that official definition of adjustments from the law, but otherwise this is going way beyond any categories or yes, I agree like the Equality Act mentions 9 and I think we need to go way beyond that. I think this is about humans in all of our complexity and all of the things that make us similar and that makes us human and the difference is that make us unique as well. So I really like the point I really aligned with it and I if it wasn't fully clear and transparent from the beginning, I think it's good to reiterate that for sure. What we're talking about applies to everybody and also we all are, you know, uniquely intersectional beings, let's put it this way.

Hope that helps.

Petra.

Petra Boynton: I was. I was writing down so I wouldn't forget what I was going to say or Christoph was talking. I really like the question actually because it made me think, although I just put up a slide with lots of different intersections and things. If I'm put on the spot and I have to say, who am I at any one time I I don't that I you know, I kind of I I'm it's a really interesting question that almost we need another discussion about from a sort of philosophy point of view with philosophers leading it because I kind of I kind of don't know how to think about this now and I kind of want to know how to think about this now but what I would say is that.

Something that comes up a lot when I present that slide is people do find it challenging in lots of different ways, and one of the things the questions that does come up, but I'm not sure you were asking Christoph, but I'm going to say it anyway is that it's like do I have to give someone a space because they have a disability. So there were two scholars on the interview and one was really good and one was less good, but they were disabled. So I had to give them the job. I don't think that's what you were saying, but that does get asked a lot. And I think that it's something that's quite challenging for disabled people to hear and react with.

But I think that it's about getting your foot in the door to begin with. So I think for a lot of people, you don't get the chance to be on the panel to be chosen anyway because you haven't got that structure there. So for me, we worry about things that are kind of up here, but are we need to address the really boring stuff around there that everybody gets the opportunity for then you to decide whether you want this candidate or not. What whatever reasons going on. I think there's also something about the fact that for me, a lot of this area has I know lots of different country laws regulations

Acts, different things are happening around identity and there's, I know a lot of tensions around particular areas of identity that I think some people are really keen to embrace and it's very much they know it and others. I think it really frightens and I think particularly people with learning difficulties find that level of discussion really, really hard to process. And we heard earlier about being scared of saying the wrong thing. So though this isn't really an answer, it's just my thoughts as you know, I think Solène and Christoph were speaking. But one thing I did really want to just flag up once more in all these conversations.

Is that we still have them if we're thinking about identity from a very Eurocentric US, Australian, New Zealand, kind of when I say Australia, New Zealand, I'm not talking about considering indigenous people because they're routinely left out of these conversations. But this kind of the global North conversation and we've got people in low income countries, all tech people, independent researchers, people who've been booted out of academia, who can't even get into this conversation.  Because the research councils don't let us into this conversation, and other academics don't let us into this conversation. I mean us in that point that I'm a sort of an alternative academic, I guess. But I know from working with scholars in low income countries. Particularly who have disabilities and neurodiversity? That it's impossible to even have to get to a panel to get in, even to get into university. So I think we really need to think around how do we just help? It's a pipeline thing you said Lindsay again. Is that how do we even get here? And one really quick thing that I know because we'll run out of time is that when we talk about getting into academia and disability. There is a disconnect, I think, between a lot of the models we currently have of the disabled scholars who make it have usually been successful through education. Not all, but a lot of people have. And there's a difference between those academics and I think the ones who have had a totally different educational experience and perhaps have come into education a lot later in life, who are everyone carries their own baggage, the high achiever struggling with disability is one. But the person who is told that they're useless and is trying to navigate this system that every set back if people are telling you no, you can't do it, you'll just go. And I think we've really got to bear that in mind.

Lindsay O’Dell: Thank you.

Panel. Thank you very much. There's been a really excellent conversation. We're moving into the last section of the day. We're going straight into this. It's the last half an hour and we'll finish on time at 3:45.

The chat is really really powerful. So thank you everyone for engaging.  This section is called Calls to Action. What I'd like to do for those of us who are OK to stay in the room this afternoon is I'm just going to sum up a few of the themes from each of the panel and the two things that I'm going to take away to do. I'd really welcome others to join in to respond to what they've heard.

And really kind of thinking about what, what are we going to do collectively?

And you know what? What are the questions? What are the actions? OK. And my brain's getting a little bit tired, I do apologise. OK, so panel one, Research Culture. One of the things that really struck me was one of the presenters said, I have staggeringly brilliant researchers that I don't have funds to employ properly. So for me, there's a really important issue about how we provide funding for really important research for marginalised researchers.

Another big issue is around and this came and this came up Panel One, but actually is a theme through theme throughout.  Normalise access needs. So how to make? How do we make this ordinary routine so individuals don't need to ask?  Or find out that information, but it's actually routine and ordinary, and part of the discussion. Another theme from Panel One challenge individualisation, so it's not for disabled people to change, but it's the institutions.

It's also a big theme around training for leaders, so training that's designed by experts with lived experience recognising that people with disabilities don't talk with one voice but talk with multiple voices.

And that that training is then translated into practise. And a final point from Panel One, which I think is really important and something that would be great to figure out how we take back to the big funders like Wellcome and UKRI and Katherine mentioned this more diverse funding models, so part time, full time. I'm particularly interested in intermittent engagement. So how can we accommodate for that in funding models? What would that look like? I think we should be doing it. But you know, how do we how would how would that work? So variable engagement with flexible and sensible deadlines to quote from Catherine's.

Panel 2. A really striking comment about the drop off disproportionately of disabled people through the educational pipeline. And again, that's something I feel very strongly about. So how do we work on and address that pipeline? So by the time we're getting to be principal investigators and attracting UKRI funding, actually there's such a huge attrition of really, really important, valuable work and people before that point.

It's also an important point, and Panel 2 about the importance of embodied experiences of buildings and how important that is, as well as their physical in inaccessibility. Some really striking and powerful examples of where basic legal requirements about around access are just still not being met.

A strong theme about the illusory and oppressive ideal academic using quote marks there and that changing the environment within universities and research culture actually would help everyone. There's a need to think holistically about Universities. So to include in our conversations, not just academics, but technical, professional and other staff within universities. There was a strong theme through Panel 2, but also through the day about not overburdening a small number of disabled staff who then have to educate and feed into policy developments within their university, so to very much become the speaking other.

So to not overburden them, to credit them for their input, but also to not ignore their voices.
So how do we train up senior leaders and others to have a really strong awareness to actually do that work on our behalf? There was a specific call to action around Charter Marks and a concern about amalgamating potentially charter Marks and the need for a Charter Mark that is designed and developed from within disability communities. 

Panel 3 - So themes coming out here inclusive innovation benefits everyone.

It benefits the economy. It doesn't cost money. And in actual fact, you know it it it's cheaper in the long run and that's something that that has also been a thread through the conference, the notion of anticipatory adjustments. So again, going back to that idea of normalising, let's make ordinary that lots of people will have different needs. Actually that they're normalised and provided up front rather than for people to have to ask for them or make special requests.  So a strong call to action to hold institutions, so universities, research funders, etcetera, to account for the research cultures. That feel oppressive, unwelcoming, damaging to people's health and unequitable in many forms.

And then some final calls of to action around thinking about recruitment and selection.

And how that can be done equitably? And also a question which in the comments somebody had said, oh, this could make a really good small research project, which was to look at the representation of disabled people in funding bodies.

So there some of my reflections and I'd really welcome comments from others.

In terms of my take away, so my things that I'd really like to do.

One is, I'd really like to consider PGR postgraduate research in particular, so I have a particular focus around pipeline and how I can work within my institution. I'd really love to work with others more widely.

To think about how we normalise how we make ordinary access needs. So how we work from an anticipatory approach.

Within PGR provision, some of that may be within

My, my university and things that I can do here, but some of this really involves conversations with research funders. So UKRI in particular is a significant funder.

And link to that to lobby for funding for postgraduate research that is flexible.

And offers the ability to engage flexibly with, with funded PhD projects because that's incredibly hard at the moment.

Yeah, I'll leave it. I'll leave it there. 'cause. I want to leave. We've got just over 15 minutes, so I'd really welcome comments or calls to action from others.

Either in the chat.

Or if you pop your hands up. So I think we have Hede.

Apologies if I've pronounced your name incorrectly.

Hede Cavell: Thank you for this wonderful conference. It's been brilliant and it's really helped to underpin some things and also I wanted to know well there's something I'm taking away from this that could be a stumbling block comes from those that have gone before, who never had the assistance or help and could it be a stumbling block that a mindset could be what I never had this help, so why should you? And how do we shift that culture?

Lindsay O’Dell: Yeah, yeah. It's definitely a culture that we need to shift and challenge, isn't it?

Really reminds me of Petra's talk in the last session around.

Kind of mental health and university cultures, yeah.

Hede Cavell: Yeah. So that's.

One thought I've taken away that could be one of the big barriers of how to move forward.

Lindsay O’Dell: Yeah. Thank you.

Hede Cavell: I feel personally.

Lindsay O’Dell: Yeah, thank you, Petra's put a comment in the chat. Suffering is a badge of honour. I think we often hear, Petra, I don't know if you want to come in on that.

You don't have to, but you can if you want.

Petra Boynton: Yeah. Just very quickly to say, yeah, I that that's come up a lot in bullying that people who've been bullied often say that they coped so therefore other people who want support shouldn't, and I I think it's also come up in training that people managed to get through and you hear about so many things are offered to students nowadays and in our day you know, we didn't even have computers that there's often a kind of resistance to offering support.

I think it acknowledges that some people have been through awful things, but it doesn't mean that they shouldn't be seeking help for themselves or offering support to you.

Lindsay O’Dell: Thank you. Other responses, other people's thoughts on the day they're call to action. There's some really lovely chat around a community of PGRs that are very happy to see in the in the chat talking about kind of wanting to support other PGRs. So that's that's great. Really welcome that and we'd love to work with you on that Solène has to commented about Hede's challenge. Solène I don't know if you wanted to come in and then we'll go to Inga.

Solène Anglaret: Yes, I was just responding in the chat that it's a great challenge and it's common across also different parts of the diversity conversation. So with gender, we hear a lot, you know, women who've made it to the top, then, you know, uphold the system even more so in some situations than men themselves. And I think there is a real big exercise here in, in the culture change and really undoing.

The ableism in and around us, but also the ableism within us as well. 'Cause I think a lot of us will uphold the system because also we think oh you know I'm maybe I'm not that disabled or I'm not like you know and so we have all this internal dialogue that prevents us from making the change or like I had to survive and I had to compensate. So it's a it's like being conscious of that and I think B it's like leaning into that conversation and ourselves being open and saying, yeah, this is this is this is hard.  And to think, oh, because I didn't have something and I had to struggle to think that someone you know will get help from the beginning. But actually, it's so amazing as well, isn't it? Isn't that the legacy that we want? So I think we can take people on this journey of saying, like, your resistance. I understand it. Like I it makes sense that you think it's unfair. I had to struggle why you know. But at the same time if you it's asking people the question right rather than challenging them it's like well what if you didn't have to struggle like how might that have changed your career and your life? Sometimes just asking people the question just unpacks that initial reaction and block if that makes sense.

Lindsay O’Dell: It does Solène, just picking up on that also the thing I took away from your presentation was asking the question, you know, what, if CVs that have a variety of different engagements with different kind of areas of work is perfectly acceptable. What if we think about that as bringing skills rather than thinking about it in in problematizing ways. And then kind of leading on from that or what does that mean in terms of recruitment practise? How do we understand and value kind of diverse ways of engaging with research and with other work that doesn't assume this kind of ideal academic who could just plough on 24 hours a day for the whole of their lives without getting sick or whatever, which is totally illusory and unhelpful to absolutely everyone. So thank you. That's really that's really helpful. Inga, did you want to come and you've got your hand up?

Inga Reichelt: I don't know whether I can turn my camera on as well, but.

Speaker 1: Yeah, you can now Inga.

Inga Reichelt: Yeah.

Great. Thank you. Yeah, there was some really interesting contributions and I'm glad to and I feel like the overall effect of the event has been that I feel a little less alone, but at the same time, that can sometimes feel a bit discouraging. 'cause. It's like, oh, if all higher education institutions are like this then should I stay or should I go, which I guess the alternative academics and maybe have some more thoughts about?

But I wanted to comment on how for me as a disabled postgraduate researcher. Sometimes the logic of the Research Council is quite unclear. So, for example, I had to request an extension to my PhD degree because of lack of care support because it took ages as an international student to even be eligible for adult social care in the UK. And once I became eligible, as many of you know, we have a social care crisis in England. And so I keep having to employ new staff every couple of months and that just takes a lot of time and energy and there is a lot of unpaid labour and then my university said oh better just apply for 12 months. Do not raise too many questions with the Research Council because somehow applying for more than 12 months requires like an extra procedure. And from my perspective as a PhD student, I guess I don't have that much insight into the internal workings of the university I'm like well, is it to make it easier for me so that they don't ask me questions? Because from my perspective, maybe they should be asking the university what's gone wrong, why my progress is delayed because frequently I had to ask for certain reasonable adjustments and accommodations repeatedly. Then it took them eight months to implement the adjustments, and during that time I was just expected to progress at standard part time rate in very, you know unsuitable conditions which worsened my health depleted my mental well-being, and so when the university administration then says, oh, just request the 12 month extension for now, so we don't have to answer too many questions towards the Research Council from my position as a student, it's quite unclear whether they're doing that to save their own, you know, reputation and not want to answer questions towards the Research Council or whether it's something I'm being advised out of care for me, and I think there may be. I know that this can be difficult, but there may be. We also need more collaboration between disabled staff and academics who kind of understand what the funding system is like and postgraduate researchers who still have student status and aren't privy to, you know, the internal university funding details of these structures. And because sometimes I'm getting advice where I'm not sure whether the person is on my side and it can feel quite confusing.

Lindsay O’Dell: Yeah, totally get that. And I'm really sorry you're in that position.

Yeah, I I suspect and it's no consolation at all that that you're not the only person in that position at all. So I'll respond just briefly. Really happy to have a conversation with you outside of this. I do understand the funding landscape around PGR. I think what you're saying really goes back to a couple of things. One is the real strong need for diverse funding arrangements. So how can we flexibly support PGR students and researchers unfunded grants to be able to produce the work that they're clearly capable of doing, but that actually, for whatever reason, their engagement.

It may not be 9 to 5 or 8 to 7 or whatever it is, 5 or 7 days a week, but that actually that you know that is perfectly legitimate and reasonable to expect flexibility in terms of working. So how do we do that? That's a real challenge actually. And then the second thing, and I think Catherine's got a hand up and be very happy to hand over to you, Katherine in a sec.

Is about. You're kind of wider question about well, is academia for me and in the research that we've just recently done at the OU with.  PGRs here, who identify as having disabilities long term health conditions and neurodivergencies that was a big question because as Petra and Solène and others have said during the day, you know, academia can feel like a very uncomfortable and difficult place to be. So I really welcome the conversation in the chat where various PGR students at the moment who are talking about, let's kind of get together on this. So I'm hoping, Inga, that we can help you feel less alone with that. And I really welcome those conversations and bringing that together, I'm going to pass over to Katherine.

Katherine Deane: Yeah. I mean, Inga's case is an exact case in mind of we're too damn patient. We're too damn nice. We're too damn polite about this stuff. That is a clear breach of health and safety. That is a clear breach of policy. That's a clear breach of equity. We should be fighting back far harder. We have asked nicely. We have asked patiently for so many years. We really need to start to say no. We're not going to put up with it anymore. And I think the funders have started to realise that this does have huge negative impact on their outputs on their quality, on their achievement of their equity goals. And I think we've got to really push forward that disability is not a deficit.

Our impairments are part of our characteristics and that they inform and in.

Colour in in different ways. The way we perceive the world, the way we research the world. I do research very, very differently because I'm a disabled researcher. I do research that I would claim very happily has a lot more impact because I'm a disabled researcher.

I want to be valued for that difference, but I have to do things differently and I will start to say to everybody please for starters, join your Trade Union.  It's a damn good insurance policy, and it is a lot easier to say all the awkward things to the Trade Union Rep and get them to say it in a meeting so you're not the one being accused of being non collegiate etcetera. And I'm always grateful. I always enjoy doing that bit of the being a Rep. Of saying the awkward things of being the difficult person in the room, but I think it is that responsibility on all of us to start to step up and say no, this is no longer acceptable.  Just as we would not expect a black person to go round the back of the building past the bins and in the back door, please.  Well, why are we still expecting wheelchair users to do that? Why are we still expecting people to work exactly as Inga just said to the same standard, but with hugely detrimental context that they're trying to work through, not just within the university, but also outside of that world? And yes, an employer is just as responsible for that as anything else. You cannot get to work if the transport isn't accessible. You cannot do the work if you've been exhausted by fighting for your PIP money.  And everything else, all of this we need to deal with. It's a systemic problem whereby people with disabilities are regarded as second class citizens who bluntly, particularly during COVID times, should go away and die quietly. Well, I don't want to be  ******* quiet anymore. I am tired of being quiet. I am not going to be quiet anymore. I'm getting louder and louder. I swear I get more, turn more and more into an aggravated teenager going. It's not fair. But as an adult I go but I have some solutions.  Let us get these funders. Let us knock their heads together. Let us get the universities. Let us get the learning societies. Let us embarrass the **** out of them and say yes. Let us do something different because it is achievable. It is possible. I have the black Swans in my university. I have built a fully accessible lab. I can change policy that it is possible to do this. Let us get on and do this rabble rousing over done.

You're muted, Lindsay.

Lindsay O’Dell: Bloody hell. There's nothing else I can say. Katherine, you've said it. Amazing. Let's take home. Message. Let's embarrass the **** out of them. And I'd love watching.

The signing of that. Wonderful. Yes, Katherine. You you. Yeah. Katherine for PM.

Yeah. OK. We are just about out of time. I want to thank everyone. So I'm just keeping an eye on the chat as well. So this is the start of the conversations. It would be great if we could collectively embarrass the **** out of them and to collectively be the awkward, the awkward ones, because I think there is a strength in that that actually when you're on your own doing it, it just takes up energy and is very precarious and uncomfortable position. So let's see what we can do together.  Katherine, we've just voted you as PM.

And obviously that's really incredibly important at the moment. So just a very final thank you to everyone. I don't want to go because I'll just have been such a lovely time with you all, but going to finish on time. Thank you. Thank you to the members of our Steering Group, Dr Jonathan Harvey, Dr Katherine Dean, (now PM) Paris Graham and others. Thank you so much. We've really welcomed and learnt from your lived experiences and expertise in shaping our planning for the conference. Thanks so much to the BSL interpreters, ajal and Michael. You've been amazing. I think that we've yeah really welcomed having you here.

Thank you. Thank you to all of our colleagues and allies at the OU who supported the project and continue to do so. Sharron, who sat over there from me and has been sharing my chocolate biscuits. Inma Alvarez, Helen Bowes-Catton , whose sat over there and Nicoleta Tipi and our colleagues. Thank you, Babette. Who's been with us all day and been really helpful around the tech and Sam Hazel, who's also been brilliant around the tech. Thank you so much. We might need to lie down and to eat some more chocolate before we think about another conference. But we will be in touch. The event is being recorded and will put that on the website, and we'll be in touch with you and let's continue to embarrass the **** out of the whoever needs to be embarrassed and to collectively really urgently make the change that's needed. So thank you everyone.