Let's Talk Disability

JACKIE: Hello, I'm Jackie Carter. I'm a Professor in Statistical Literacy and the Academic Lead for Disability Inclusion at the University of Manchester.
I live with a disability and a long-term condition and often describe myself as deaf, dizzy and disabled. Here's a fact of two. 24% of the working age population in the UK has a disability.
80% of disabilities are hidden or invisible as are mine. I started the Let's Talk Disability podcast series to provide a platform to raise awareness of what it means to be a disability -inclusive university.
The podcast is a series of conversations which I host on the lived and living experience of our colleagues and postgraduate students of being disabled or having a long-term condition.
On each episode I host two guests. One is a senior leader at the university, a person with influence and responsibility. The other is a member of staff or postgraduate student who is open to sharing their disability or long-term condition.
The aim is to demystify what being disabled means and create a culture of sharing. But and this is important, each episode moves from dialogue to deeds, from talking to action.
The senior leader is invited to commit just one thing, an action they will take away as a result of the conversation. The disabled guest gets to say what one thing would make the difference to their lived experience as a colleague or a student at the university.
So let's dive in and find out what today's guests want to share and what they will commit to, to make our university more disability inclusive.

JACKIE: Okay, so welcome to today's episode of Let's Talk Disability and I have two guests in the recording studio with me who I'm going to start straight away by asking them to introduce themselves.

HEATHER: Hi, my name is Heather Cockayne and I'm a senior lecturer in International Education based at the Manchester Institute of Education. I'm also the Equality Lead for Disability in the School of Environment, Education and Development.

JACKIE: And about to be?

HEATHER: The co-chair of the disabled staff network.

JACKIE: Thank you, by the time this airs you will be the co-chair of the disabled staff network. Thank you, Heather. Fiona?

FIONA: Yes, so it's Fiona Devine who's Vice President and Dean of the Faculty of Humanities.

JACKIE: Wonderful, thank you both very much indeed. So we've had a quick chat about today's episode. Where would you like to start?

FIONA: So maybe I'll start and ask Heather a question. First of all, congratulations on that new role. Perhaps look forward to hearing a little bit more about the network as is part of our conversation. But maybe you would like to describe for our listeners what it's like to work at the university as somebody with a disability which you might regard as hidden or otherwise. I think that will be insightful for the audience in terms of thinking through some of the issues that you might have and also some of the joys of still working at the University of Manchester as we often discuss.

HEATHER: Yeah, okay. So I guess first of all hidden disabilities or maybe non-apparent disabilities are sort of the clues in the name. So disabilities that might not necessarily be initially apparent when you see someone. So for me I'm partially sighted. I have several conditions which affects my sight. So I have quite low vision and people wouldn't necessarily know that when they first see me. So that presents its own challenges because obviously I have low vision and operating in a world where people are expecting you to look at certain things, see certain things and particularly in a university environment. We use a lot of PowerPoints and presentations and sorts. So actually viewing those can be a challenge at times. However, I think the university has changed a lot since I've been here and also I've changed with the time I've been here. I started at the university in 2014 originally as a PhD student. So I've been here for some time and I think things have changed. The culture has changed a lot. There's certainly more discussions around disability. There's a lot more happening within the EDI space and I think in some ways that makes it a little bit easier to suggest changes or if anything needs to be altered. It provides a better space for doing that I think.

JACKIE: Yeah that's great. Can I briefly? So I've also noticed that Heather and you've been instrumental in your particular school and your area of the university. So it's really good as to see you taking that into a wider sphere. Being part of the co-chair, the incoming co-chair of the Disabled Stuff Network. I'm sure we're going to talk about this but in particular, so I'm wearing today for the reader, for the listeners rather, I'm wearing my disability sunflower lanyard to show that I have hidden disabilities, mine's hearing impairment and some cognitive issues and balance impairment because of a rare disease that I've had. Do you wear your disability, your sunflower lanyard often at work or is that something you choose not to do and if so what makes you decide one day or another to wear or not?

HEATHER: Yeah good question. So I tend to wear it if I'm in new or unfamiliar situations or spaces or perhaps with people I don't necessarily know. So I might, I'd probably be more inclined to wear it Welcome Week for example when we're meeting all the new students. One I can explain to them what it is, excuse me, but then also they would know straight away. Well I would tell them of course explain. But I think when I'm in a situation or a space where I'm quite familiar then I probably don't wear it because it's just a bit of annoyance sort of around my neck. I don't really like it. But it's interesting and I think as I was walking across here and through campus I saw more and more signs actually displaying the sunflower notice and I thought that was really nice because I think more and more people are starting to understand what it's about and what it's for and this year I noticed in our department we actually had more students wearing the sunflower lanyards as well which I think was really encouraging and something I'd not really seen before.

JACKIE: Oh that's great thank you. We have had a big campaign, we ran a campaign on campus with the Students' Union. I was involved Aisha from the Students' Union and others and we all got together for the very reason that if you have a hidden or unseen disability how does somebody know what your needs are and by signalling by wearing either a pin or one of the lanyards it does bring to attention that you know we have a large proportion of our student population who have a hidden disability and the same is staff. So of the 23% of the working-age population who have a disability it's estimated that 80% of those are unseen so it's a really important critical thing to do on a campus like ours where you might not be aware of that.

FIONA: So I was just going to say then Heather, talking about your experiences of being both a PhD student and now a member of staff and you think you are seeing that cultural change. Do you have that sense of belonging to the university of feeling included? It does seem like we're making progress but there's always things more that we can do and I just wondered if you could give us some reflections on that bigger cultural change because obviously we can put policies and procedures in place but it's that culture that creates a sense of belonging isn't it?

HEATHER: Yeah I think it has changed over time and I think I would say I feel more included than I did but again I think it depends on different situations there would be some groups or meetings that are perhaps more aware and are more inclusive than others so for example as I mentioned I have sight problems so if I'm invited to a particular meeting and there's a presentation and they're like right okay have a look at this and then they don't explain what it is I'm sitting looking I can't see what it is whereas if I'm in a space where people are thinking a little bit more about it or they know what I need they might say okay so on this slide we have and then there's a bit of a description to go with it or better still perhaps they've sent those slides out in advance and then I can sit with my own device and read the slides and you know as they present, I can still follow along with that because I think there are certain things you can still feel I could still be in the room with those people but then not be included in those discussions because I can't really see what's going on exactly yeah yeah so if somebody were asking about I don't know maybe there's a question related to something that was being presented or as I don't know what's being presented I can't take part in that conversation or answer that question.

FIONA: And I guess also you don't want to find yourself in a situation where it's only when people know that are responsive it should be a consistent experience for you that any setting that you walk into that you feel included in those ways and don't find yourself presented with a situation where you feel that you can't fully be you know participate in a research conversation and all those sorts of it's often that getting that consistency of practice across a very big institution which we are isn't it which I think is often critical

JACKIE: Yes I think you've hit the nail on the head Fiona and that's one of the things that we're trying to do in disability spaces because if we create experiences and resources and opportunities that are inclusive by design everybody benefits and if we we need to think about that we need to design and bake that in at the start rather than thinking about it subsequently. So I was struck when you were talking about your own device, so a lot of disabled people do have support technological support where for instance I will always look at the subtitles because I no longer rely on my ears to hear what's going on but without that ability to be able to do that I would just like you said could be in the room, that was beautifully put by the way, could be in the room but not included and I think there's something culturally that we all have to address in order to ensure that even if we don't know what a person's disability or need is that we're at least planning and designing a good experience that is inclusive a lot came out of that yeah that's one question yeah

FIONA: I was also going to pick up on your reference to technology so you're saying you had your own devices where you could read on that has the university been supportive in that space because so many interesting developments going on here now and a lot of advances and so on yeah, tell us a little bit about how you use technology and then maybe where the university supported you or should be doing more and all those sorts of things

HEATHER: So I use my smartphone a lot I think that's and that's just my own personal phone because I would use that outside of work as well so even just you know going into a coffee shop most of them have menus high up on the wall behind the behind the counter so of course I'm taking photographs or you know trying to navigate things so I use my phone for a lot of things um I've also got an iPad which I would use that's again it's my own personal one the university's provided a laptop which I requested one with a bigger screen so that I can enlarge things and IT were helpful with that and then DASS provided support through there's a particular person who's quite experienced with the different functions to either enlarge text or change the contrast or.. so I had a meeting with that person to sort of try and go through what would be most useful for me kind of thing which which was helpful and actually being able to not just speak to someone but they could show me on their computer what it was and then they send me a video recording so I can remember how to do it later but yeah that that was quite helpful

FIONA: So that helps you in terms of your teaching preparations that you're doing as well with it

HEATHER: Yeah I guess so because most of it I would just do either on the computer or I use my phone a lot for things but I think that's another thing sometimes people think why is she always on her mobile phone especially in meetings or conferences or things like that and it's like she's always got her phone out and I think that's another thing to perhaps be wary of that doesn't mean that people are not paying attention or whatever but they might be using that device for actually trying to participate and engage with stuff

FIONA: yeah and what's your feelings about what the university is doing for students in that
space of well you know it could be AI but more general support for students with both visible and invisible disabilities

HEATHER: I think there's a lot that people are trying to do I mean I'm more familiar with what's happening in SEED because obviously that's the school that I'm linked with there's been some work going on trying to demystify disability because we have a lot of students from overseas and of course disability and understandings of disability can be considered differently in different cultures so of course when we have a lot of students coming to Manchester it's almost like well trying to explain how are we viewing disability and what is what support is available so there's been ongoing work to try help with that and then there's been we're trying to do more, a little bit like what we were talking about before trying to get that consistent approach to design to try and ensure that teaching and learning is inclusive but almost trying to start from that design process to think about how do we make that accessible for everyone rather than a particular student comes and oh I need this okay I'll make the changes for that one student but actually if we try and do it from the design process then hopefully everybody you know everybody benefits but there's lots of bits going on in the background but it's just trying to bring it all together.

FIONA: yes I think that's always one of the challenges for such a big institution like ours so four schools in the faculty of humanities I know each of them is doing great things in these days you know there'll be variations of practice and one of the big things is also about sharing good practice and how do you go beyond silos which are often unintentional but just making sure that people are talking to each other and yes across all the things that we do because we don't need to reinvent the wheel every time there's lots of things going on and it's just making sure that we're that we're hearing about them across the piece when we're such such a big entity

JACKIE: I agree, one of the things actually that having a kite mark for disability inclusion so we have the Disability Confident Leader status having that means that we do have a way of bringing together examples of good practice wherever they exist in the university because we are required to capture that in our achievement plan so working closely with the EDI Directorate, one of the activities we're undertaking is obviously to get action owners and people who have responsibility for this and will feed back to us centrally what's going on but it's also it's not just a sort of audit it's not just a collection, it's a well what worked for you and having that practice those conversations on the ground and I think in terms of changing the culture my perception of perhaps what needs to happen more is that we are better at sharing practice, it's not that we're doing practice and we're sort of evaluating it within our own parts of the university but sharing with others what does and also what doesn't work because we're a learning institution, I know Duncan's very keen on this because we've talked about this on the podcast and we need I think to get better and I think that's a real area of growth actually for disability inclusion I don't know if you've thoughts on that with regards to students or researchers how we can share that practice better

FIONA: well I was going to throw in that's all part of the shift that we're seeing within the university isn't it, to be thinking about how we operate as one university and in terms of everything we do but this is an example of how we could be working across schools across faculties, like you say what works what doesn't work and so you are progressing in a way because sometimes you can have lots of cottage industries, different things and this is and this is a way of kind of creating the kind of culture we want in the institution as a whole really I was also going to ask well I could ask it of both of you as well of course is we've talked about some technology in terms of and additional costs associated with equipment but there are always wider issues like travel, accommodation and all of those sorts of things and the university is thinking about those sorts of issues in terms of you know both students and staff and the additional support that they need there isn't it.

JACKIE: Well I can share something with you that's hot off the press if I may with regards to a research grant that we have had funded to look at disability inclusion for postgraduate researchers, early career researchers and postgraduate researchers so those doing their PhD here and this has it starts on the first of August So by the time this is live it will be happening but one of the things we want to do is work really closely and it comes back to your point Fiona about work really closely in partnership with the Disabled Staff Network with the Disability Advisory Support Service, with PGR support networks and groups and early career research networks and groups for disabled people so that we start to better understand what the additional needs are so obviously they're you know protected by law that we have there are certain grants that they can apply for and certain funding they can apply for currently if you're staff you can apply for funding from the government through access to work, I do that I get part funding for my hearing aids and if I go to a conference, travel, I can no longer travel alone so I take somebody and I ask for a support worker to come with me but I think probably in that hinterland of training to be a researcher developing in that early stages some of those costs are not very apparent and I think as a university we need to better understand what those costs are so you know to take an additional carer, additional cost for having accommodation on the lower ground with a shower for instance for wheelchair users and so on and so forth so we're actually working really hard collectively across the university to find out what those costs are so that we can come back to the university or look for external funding to say in order to give our early career researchers who are disabled the opportunity to develop their careers this is over and above what they currently receive so that hidden piece you know what, what is unseen that people are currently paying for. Have you had the experience of like yourself Heather in terms of your own career development

HEATHER: I can't really think of any specific examples but there is certainly, there's often things that you yourself might not think about that suddenly comes up or I don't know for example obviously I don't drive a car thankfully so you know I'm reliant on public transport so if there were events or things that were happening quite late and then suddenly the public transport is not running very frequent in the evening that would then put me off attending something that was quite late or if it were wintertime when the clocks have changed and it's dark you know and I'm thinking I can't see the buses I mean I can't see the numbers on buses anyway but then to then try and catch the bus in the dark, potentially in the rain, we are in Manchester, I would then not attend certain things and I think you know little things like you say hidden potential challenges arise sometimes that I think even though you're experienced with your own disability and needs etc even sometimes some things come up you think oh okay that's now difficult or that's not possible or so I think we also need to keep talking about things and keep reevaluating and exploring things it can't just be a - okay we've spoken to people we know these are the accommodations that need to be made or need to be met or whatever we're done because things change don't they and I think it's an ongoing an ongoing situation with stuff

JACKIE: That issue with transport just to respond to that based on what we're doing with the grant is we've got an early career researchers develop we've no we've got a career development fund that people will be able to apply for obviously we'll have a process that's open and transparent for those applications a selection of people considered but things like you've just described in public transport if an uber or taxi could be if you knew that was an option before you went to the event and you weren't going to be out of pocket because of it because it was a fund available really small things like that can make a big difference it can be the encouragement to attend a career event an event related to your career because you know that you're not going to be disadvantaged by doing that so I think those lived experiences are just so important

FIONA: Yeah sometimes we do have to sweat the small stuff because it's cumulative isn't it as well I really think some of these things can make a huge difference when they add up absolutely yeah. I was interested listening to previous podcasts I think you had Will Stone on one of your podcasts where he was talking about having a kidney transplant but just thinking about for many people especially with hidden disabilities you know the fatigue that comes with a long-term illness of different kinds all the time we're talking about productivity aren't we of how we much more efficient and effective and you know there are people in some spaces where yeah you know a day is more exhausting for others than others and it's thinking through that it's thinking through people might be on drugs which have side effects as he referenced there and it's kind of knock-on effects in different ways and not realising how often people have to have check-ups and appointments and all those sorts of things so yeah it was incredible listening to him and talk about something that you know to meet Will every day he's full of energy and always enthusiastic about things but yeah just sort of thinking about different levels of fatigue of perhaps also chronic pain that's attached to illnesses and things like that and we really are often unaware of that of those sorts of things and it's kind of and also not making assumptions about people isn't it that is absolutely critical isn't it sometimes, we make an awful lot of assumptions about things

JACKIE: Thanks Fiona the tiredness effect comes up time and time again in fact of all of these episodes that we've recorded the one thing that is most often said by guests usually the guests who don't have the disability is that I just didn't think about it and I think there's something here this is partly why we're having the conversations and discussions because it's not that we're forcing people to think about it but actually being the advocate for your own and other people's disability is in itself another effort you know it takes a lot of effort to manage your own disability but then to work collectively to raise the issue of what it means to have a disability or chronic or long-term condition and we need more people to be thinking actually as a university I think you know if we really do want to step into that space of leadership we need to be designing, we need to be thinking, we need to be making aware, we need to be listening, feeding back and changing iteratively on an ongoing process because it's not going to go away

FIONA: Oh absolutely not no

JACKIE: I'm glad you took that away from that episode because that was a very powerful episode

FIONA: Absolutely yeah as as they all have been Jackie

JACKIE: I remember that one in particular because that you know he had his his procedure many years ago

FIONA: Yes indeed yeah

JACKIE: What haven't we covered Heather that would be nice to include before the end of the episode

HEATHER: I think just linking back to what you were just saying Fiona and sort of some of those hidden stresses or challenges or things like that and I think we often find we have a lot of staff or students perhaps masking, hiding their difficulties, symptoms, anxieties perhaps for either fear of not wanting to bother people or you know I don't want to be seen as a burden or create extra work for anyone else and I think sometimes we have to try and sort of say look if you need something actually ask, ask for it and I think we need to try and be or create those spaces where people feel able to ask and like I say we are we are getting better at that but also especially when we've got new students coming in creating that environment where they feel they are able to express those things and ask for those things because we don't want people sat there stressing about stuff and worrying or then someone like me for example sitting there thinking oh well I don't know what's going on I can't see what's happening over there I can't take part in this class perhaps or I can't you know and if we've got students doing that as well then they're potentially not going to reach their full potential not going to be able to engage as well as they could whereas actually if they just sort of said okay I just need a little bit of help with this that could take all that away potentially

FIONA: And there's no judgment made

JACKIE: Yes, it's supportive, absolutely. That's interesting because I was I came off a call this morning we were talking about supporting students needs without them necessarily feeling that they have to register with the disability advisory support service and that becomes really important because some of those waiting lists for certain conditions are very very long but you know if a student doesn't feel that they can request something which would enable them to learn well what tends to happen is that the rate of attrition is higher for disabled students so you know we really need to tackle that because if we're getting students coming to Manchester and then for whatever reasons then needs are not being met and they're leaving before they get to the end of their degrees then there's something need to be done and that's part of the access and participation plan that Manchester is working on.

FIONA: Yeah I mean you shouldn't be losing students on that basis you know I always joke often with students when I talk to them look it's been really hard to get here we are closing the doors behind you and none of you are allowed to leave until you get your degree but also we want those students to be performing to the top of their ability we want them getting those great degrees and also of course being able to participate in all the extracurricular activities alongside the academic at Manchester we want all of our students to be walking out the door with great CVs where you know it's going into a very competitive labour market and we want students of all students to be in the position where we've created the conditions we've created the environment and facilitated everybody's full participation inclusion so that anybody with disabilities walks out the door a student walks out the door with a good chance of a good graduate job that's what we want

JACKIE: We say this having just spent last week the last two weeks in a graduation ceremony which was absolutely delightful, absolutely lovely

FIONA: Yes yeah

JACKIE: One of the things that Heather and I've worked on we should get this on the episode Heather is a scholarship scheme for disabled students and it's not quite off the ground yet although there are people working very hard behind the scenes to get it off the ground and Heather do you want to say a little bit about how you got involved in that I think I came to you and said please can you come to a meeting with me because the executors of the will of the person who's left the legacy to be spent for on students and he was he blind slightly impaired wasn't he what happened I reached out to you didn't I and said please can you come and help

HEATHER: Yeah so the the person who has left the legacy they were, I think they were blind and they they wanted to leave some money for another student to potentially come to Manchester and be supported through their studies but specifically said he wanted the money to go to someone who had a visual impairment or was blind themselves to be able to sort of continue supporting others with similar challenges to himself so yeah we've as you say put started the wheels in motion for that and hopefully that will be some students will benefit from from that

JACKIE: They will and thank you for your help and that was a case of working in partnership Fiona the alumni office came to me and said there is a donor and these are the conditions of the donors will and you can meet the executors and I thought well I can go and meet the executor but it would be much better if we went together because we were already working in this space and we had a lovely meeting and they had lots of questions there were very strict conditions attached to this funding, this gift that I think we've honoured and I know that and it will be more than one student and it's a limited amount of money but it will benefit a certain number of students who will be able to come and true to the legacy of Roy Mintle he was called be supported through their studies at the University of Manchester in honour of his name so you know where we can get more of that going because we're very few sponsorship opportunities or funding for disabled students so I think we're collectively on a mission actually to raise the issues for the reasons that we've been talking about here and to improve the lives of students

FIONA: And like you say there that you work very closely with colleagues in DDAR because so many of our alumni do actually want to give back and often their first port of call is how do we how do we support the next generation of students so an example of that endowment is is typical of of yeah how our wider alumni community are also very committed to these issues and in the same way that we have alumni that are supporting those who've been in who care and those from disadvantaged backgrounds and so on so we have a whole community of alumni to draw on for their support as well and DDAR as very helpful in that respect too.

JACKIE: I think in many ways we're very lucky you know we want these episodes to also be uplifting and I think we are at a point in time at the University of Manchester with disability awareness and inclusion discussions and actions which we will come to in a minute to really move things on a pace you know we have the leader the disability confident leader status now so that shows that we're one of the leaders in higher education and we don't do it for the awards obviously we do it for the better experiences of our staff and students but maybe that's a nice segue into the final questions that you each get to ask each other so as the listeners know at the end of these episodes each of my guests get to ask a question to the other guest and commit to an action which I then take away and follow up subsequently so who'd like to go first

FIONA: Do you want to go, do you want to go Heather? Yeah go on, you look like you're more ready than me

HEATHER: So I guess Fiona what's the one thing that you would be able to want action you might be able to take forward to help with

FIONA: So I've been thinking quite hard about this because I feel like the thing I'm going to say might be a bit too ephemeral but I think the university does have lots in place in terms of policies and practices and obviously is my job as as vice president dean in the faculty of humanities through various places to be making sure that things are implemented and if anything comes on to my desk of course you know we would follow those through and that's what you would expect isn't it but it is that cultural piece that I'd quite like to go back to. Yes is continuing to work with everybody within my leadership team if you like and across the faculty in terms of thinking about that culture of belonging and inclusion and accessibility and also I was reflecting on doing this podcast and I was thinking back to a book that I read and I don't know if you remember it was called 'The Language of Kindness' I don't know and it's it was quite different to maybe to what we're talking about here but maybe not and it's about a nurse's story by Christy Watson of being a nurse in the NHS and you know how people are rushed and running around and different things and often things like kindness can get lost in in the day-to-day life that we lead and yeah it's just also thinking about our culture of going back to the discussions about people having different levels of tiredness there's different demands on people and so on how do we embrace that kind of culture of kindness as part of thinking about at the end of the day we celebrate our people and that's very very important so that yeah I'm worried that sounds a bit ephemeral

JACKIE: Not at all

FIONA: But just kind of thinking about that when I work with colleagues in the People Directorate you know where they're thinking about these things but also my colleagues in the faculty leadership team about what kind of organisation we are when we talk about we value our people

JACKIE: Thank you, Fiona you can see, that that's touched me deeply I talk a lot about love in leadership and I think that's a real challenge isn't it in a big organisation but kindness what about who, now Fiona you get to ask Heather the question

FIONA: Oh so I need to ask you the question, let me just think, so I have a responsibility obviously in terms of that thinking about disabled staff and students what would you like to ask of me in terms of the role that I play and if I could be doing more in some ways to be building on the things that we're doing so we're making good progress but there's always more to be done and better progress is there something that you think that's being neglected in some ways that I could be championing or you know maybe making more visible in terms of communications that goes out, talking to other colleagues all those sorts of things

HEATHER: I mean I think really what what you've said in terms of your action because it is almost that kind of culture shift that I think is happening but we still need to take that forward little bit more and you know belonging is talked about a lot at the moment but I feel that some people still don't necessarily feel that they belong we know there are more disabled staff at the university but they for whatever reason don't want to share that with us and there's probably there's possibly many reasons for that but I think a culture shift may help more people to want to share that information and perhaps seek out more support and that they need so I think just working on that that culture trying to build that sense of belonging for students and staff bringing in the kindness I also really like that and I think yeah just I think the more we can do with that I think that would go a long way

JACKIE: That's a lovely note to finish on okay I love that my humanities colleagues are sort of really wanted to back down to culture and changing people absolutely that's lovely because we speak so much about policy and procedure but at the end of the day it's about people isn't it what makes a change so thank you both of you so much for joining me today any final words any parting words that you want to leave the listeners with so

FIONA: Just very grateful to be invited onto this podcast it's influential I know and people have really enjoyed listening to it and yeah it's been a pleasure to be here and also to meet Heather as well because we've not actually met before a big institution you know how it is, may have even emailed each other, that's how these things go but often they meet each other face to face so this has been a nice opportunity to do that Heather thank you.

HEATHER: Yeah, and I think just thank you both and thank you Jackie for all your work to keep the conversations going

JACKIE: We're in it together thank you both of you so much