Let's Talk Disability

[MUSIC]

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, well 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: So hello, welcome to episode six of season two of Let's Talk Disability.

And it's a really hot day outside but it's quite cool in the recording studio today so that's nice.

And I've got two guests here who are going to introduce themselves in a minute. But one of the things we want to do with this episode of Let's Talk Disability is also help our listeners understand how I choose my guests to come onto each episode.

So without further ado, Rosie, if I can ask you please to introduce yourself and your role and why you're here.

ROSIE: Yeah, so my name is Rosie. I am a visitor team assistant at the Whitworth Art Gallery.

I'm here today because I kind of pitched this conversation to Jackie.

I am a person who has dealt with chronic migraines for over a decade. I'm 25, I'm going to be 26 this weekend and I've been dealing with migraines since I was about 12 years old.

I've had lots of ins and outs with different medical treatments, trying to help it and things like that. But this year I really wanted to commit to trying to improve my quality of life. And that meant doing a lot of the scary sort of doctor's phone calls and medical admin.

And I wanted to use Migraine Awareness Week, which is in September, to kind of motivate myself to do those more difficult things. So this conversation is one of those more exciting things that I put on my calendar to kind of motivate myself to do all the difficult things.

Because I really enjoy talking about access and inclusion in my job role.

And yeah, enjoy finding different places to have those conversations with different people.

JACKIE: Thank you so much, Rosie. Thank you for being so proactive. And as it happens, we were just talking about when this episode will go out. And of course, it would make sense to make sure it's out, if not already released, certainly promoted during the week that you've just spoken about. So let's see what we can do.

And talking to Rosie today, I have Ciaron Wilkinson.

Ciaron, can you introduce yourself, please?

CIARON: Yeah, my name's Ciaron Wilkinson. I'm Head of External Relations at Manchester Museum.

The University of Manchester has four wonderful cultural institutions, so ourselves, the Whitworth that Rosie works for, Jodrell Bank, and the John Rylands Library.

And I'm part of the senior management team at the museum. So I have overall responsibility for all of our engagement programme, our partnerships, and also our long-term strategy.

So I joined the museum really with the remit of looking at our strategy and renewing it. So that's one of the things that I'm doing at the moment. And my background really is a sort of outreach, engagement, policy and strategy.

So before this role, I was at Manchester City Council. And I also used to run the engagement programme at Manchester International Festival as well. So always worked in and around Manchester and either in or very close to the cultural sector.

JACKIE: Brilliant. Thank you both so much. One of the things I just want to sort of drop at the start of this episode as well is how the two of you have been at the University of Manchester collectively for less than three years. So almost two years, I think you said in your case, Rosie, and a year, Ciaron, in your case. So again, you know, Let's Talk Disability is only two years old in terms of the podcast. So I think you've come at a really exciting, you've come to Manchester at a time of enormous change because of our new vice chancellor.

But you've also come at a time or you're here at a time where we're all, I would say throwing things up in the air and seeing how they will learn differently. So this is part of those conversations. How can we as a leading university, a world-class university, you know, improve on our accessibility and inclusion for everybody?

So that's just to foreground what the episode, what the series is about, but the episode today in the light of the cultural and heritage context that you both represent.

So who wants to start?

ROSIE: I can start and talk a bit about like my lived experience as someone who deals with migraines, if that's okay with everybody.

JACKIE: That's perfect. Thank you.

ROSIE: Yeah. So I, considering I wanted to this conversation for migraine awareness in general, Migraine Awareness Week in September, I've got some facts and statistics from the Migraine Trust about what migraine is just to give people a better idea.

I think that a lot of people recognise migraine as being adjacent to a headache, but there's a lot more to it than that.

So migraine is a painful neurological disorder. There's no known definitive cause for it. And so there isn't really a definitive cure for it. When you are seeking help through treatment, it's usually a trial and error situation.

It's experienced by one in seven people. So it's very common. And it's about two to three times more
common in women than it is in men. A typical migraine attack can last between four to seventy-two hours.

So for myself, I deal with migraines chronically, which as well that word chronic means that migraine or headache pain is present fifteen or more days a month for more than three months.

As I said, I've been dealing with them for over a decade. So I've had over a decade of chronic migraines and my migraines tend to sort of flare up in clusters of around three days at a time, two to three days long.

There's also around distinct types of migraine that are listed on the Migraine Trust's website. I can list those off for you if you'd like, but it just goes to show that there's lots of different ways that migraine can present in people and that it encompasses a lot more than just the headache type pain. There can be digestive symptoms like nausea and vomiting. You can get visual disturbances. It can affect your ability to read, to speak. It makes you very sensitive to a lot of sensory stimulus, like light and smells and sound. So yeah, it's a very, I think, pervasive issue.

It impacts a lot of different areas and of your life. It's not just a more extreme version of a headache. And as I said, I started experiencing them episodically around 12 years old.

So here and there I would have a migraine, but they increased in frequency to become chronic migraines by the time I was around 14, which is when I first went to see a medical professional about it. Not because I asked to, because my parents were like, this isn't normal. And I just didn't realise that it was so abnormal, I guess, because I was living it and it increased slowly to that point. But I was getting home from school and
having to spend three hours lying down in a dark room with no painkillers that worked or anything like that.

So I went through school, not really having a lot of language to describe my experience and not a lot of administrative support, even though I had a really great friendship group and great family. I didn't really have sort of extra time in exams or things like that that could administratively support me.

So I felt kind of alienated sometimes from the experiences that my peers were having during school, because I often liken it to a little creature that followed me around, that kind of made a mess that I was constantly having to clean up. I was constantly having to care take this thing, this thing that was impacting my health without really knowing how to. And I tended to express myself through drawing and painting a lot, as I always have, but even before then.

When I went to university, I went for fine art. And it was only at university that I started using the label disabled. And that was via getting in touch with the disability support services, because I checked the box that said I had a long-term health condition. And there was a really great phone call that I had with someone through the university disability support services that kind of gave me the confidence to own that label and use that label to describe my experiences.

And at the same time, I was using my art practice in university to explore my experience of chronic health and chronic illness, because I found that the conversations that came out of the things I was making, like this type of conversation, were really fulfilling to me.

And I started to explore art as a tool for communication and connection with other people. My foundation, so my pre-BA final project on my foundation was called Invisibility, but I put the ‘In’ in brackets. So it was a bit of a play on words about invisible conditions, but also what can we find in making them visible.

And I've since done a residency at the People's History Museum as well, which was in conjunction with their Nothing About Us Without Us exhibition that was about disability rights, activism and history, that included nine deaf, disabled and neurodivergent artists exploring disability and access and inclusion and how access can be an inherently creative practice, which was really interesting.

And then, yeah, I work at the Whitworth now. I've been there for just over two years. And I like talking about access and inclusion in my role and exploring the ways that that can apply in a gallery context. I'm part of the access working group and all that kind of stuff.

So that's me.

JACKIE: Brilliant. Thank you so much, Rosie.

You've reminded me of so much of what we spoke about when we had that first meeting before you, well, when you reached out to me. And just for the listeners, I think it's important to say that, you know, Rosie came in today wearing her sunflower lanyard.

I'm wearing my sunflower lanyard. And one of the things we're trying really hard at Manchester, and I think you and I are on the same page of this, is ensuring that people are aware that a large proportion, in fact, it's estimated 80 percent of disabilities or long-term conditions can't be seen or invisible.

You know, and if people don't know what they are, then how can your needs be met or how can you ask confidently and assertively for your needs to be met?

So I'm going to hand over to you, Ciaron, what's your response to some of what Rosie said, given that you're in the same sector?

CIARON: Yeah, thank you, Jackie.

I think what Rosie's really articulated very powerfully is a story that's very common, which is about how much focus and onus is on the individual to fight for that recognition and fight for that acceptance.

For myself, Rosie had a really nice conversation the other day where she was saying about how long it took to actually get to the point where she, as you said, used the term disability, but also to be actually to have that recognition either from peers, from family, from doctors. And what I'm really aware of is how much time and energy and sort of mental capacity is taken up just by doing that, just by getting to the point where it's accepted that actually you are going through something that does make it a lot more difficult to navigate things that perhaps some of your peers find quite easy.

You know, Rosie talked about having a really brilliant set of friends around her, but your day-to-day experience of those same things would have been different because of what you were going through. And I think what I'm really, really interested in is how the culture sector can remove as many barriers as possible to respond to those needs.

So we know about one in four people in the UK do have a disability of some sort. You know, there's no agreed number of disabilities, but they're so wide ranging.

You said, you know, 80% of them are invisible.

So how do we create spaces and how do we act in a way that doesn't put all of the focus and all the responsibility on those individuals to actually have to advocate for themselves?

So for us, that can look like a lot of different things. It can be not sort of assuming that there's any one type of disabled person or even any one type of visitor in general.

And again, how can we, yeah, how can we put practices in that allow us to facilitate for as many different types of disability and types of different needs that we might encounter, but yeah, not expecting all of that work to be on the individual.

JACKIE: Yeah, that's such a profound response actually, because when you think about, you know, you've talked about the breadth of the, well, the proportion of the population that might have a disability or long-term condition.

But then just because two people might have the same disability or long-term condition doesn't mean they're going to experience it the same.

So there's a real challenge, isn't there, in education generally, but I would imagine as well, specifically in parts of the University of Manchester, in our case, you know, the cultural and heritage sector to get it right for as many people as possible.

I mean, how do you approach that?

Maybe the two of you could share with me, you know, some of what you're doing, not just for visitors, as you said earlier, Rosie, but also for people that you're working with.

ROSIE: Yeah, I mean, I mentioned to both of you when I spoke to you before today about, I went to the Museum Association Conference not long after I started at the Whitworth, and I went to a lot of the panels that were talking about disability in museums and galleries, and somebody there brought up this concept of the normative audience, and you kind of touched on it in your response just there, Ciaron, but the concept that when you are creating an event, or you are setting up an exhibition in a space, or you're curating a space that someone's going to walk into from the general public, often you do have a preconceived notion of what the person walking into that space is going to be like, and the way they're going to walk around and interact with things.

You often assume they're going to be standing, you often assume that they are going to be able to see, to hear, that they're going to be able to read in English, and often those preconceived notions kind of cut out a lot of wiggle room for accessible options to be provided, and they are often tacked on at the end of
an exhibition, or a show, or an event as a, okay, we've done all of the planning, but now how do we make it accessible, and I think that's something that we talk about at the gallery that is quite difficult to do, because there isn't a specific individual whose paid role it is to be a sort of access officer, it's kind of everyone's responsibility, but when everyone's kind of strapped for time and budget, it kind of becomes no one's responsibility sometimes, but this idea that when you are planning things, it should be an access integrated approach rather than an access after approach, if that makes sense.

I don't know what you have to say about that from a sort of more senior position.

CIARON: Absolutely, I mean, I've got a few things that would be great to kind of discuss.

I mean, the first thing is you're absolutely right, it often is tacked on at the end.

We talked about it being sometimes a box where you fill out your form, you say you come into an event, and then at the end it'll say, do you have any access needs now?

Of course, that's better than not having that box, but it really puts that focus on the individual to say, okay, I've got a visual impairment, or I'm autistic, or whatever it might be that you need, or should have access to really, it becomes on you.

But going back to what I said before, there are so many different types of this, it almost becomes nobody's responsibility because it's quite a big topic.

To kind of go back to some of the practical things that we're doing, we, like a lot of organisations and like I know that we have an access group, which is a group of different colleagues right across the sort of seniority, across the museum.

And one of the things that I've really been trying to get to grips of whilst I've been supporting that group is how do we give it power? How do we give it agency?

How do we give it decision-making tools, let's say, because you're absolutely right, often those groups are advisory, they're optional, they're things that people come to if they have time, and if they don't have time, and I've been guilty of this myself, they're often the first thing to go.

And one of the things that we've tried recently that my colleague Alex has led on with some of the access group is actually paid opportunities.

So we talked about sometimes you don't realise a gap until you're in the moment. And I think we'll never get away from that. But what I really think is important is taking stock of what that was and building it into the next thing.

So like the Whitworth, we work on exhibitions. So for our recent exhibition, which was called Wild, one of the things we realized during the process that our content that we were creating, our written content was not accessible at all.

So what we did was we siphoned off some funding that we then used to develop and train some of our
colleagues on creating easy read guides.

So again, that was a real practical thing that came out of that.

It was us identifying something that we had overlooked, really, but then putting in place something to make it happen next time.

And I talked about actually paying people for their time. That's really important. So another thing that we've tried recently is after that exhibition finished, we paid three of our colleagues within the access group that have lived experience of disability to do an audit.

And so from their perspective, actually spend time thinking, what was missing here?

What could we have done better?

But not expecting them to do that either as part of their role or just as an additional thing, actually paying them to do it.

And Rosie is absolutely right.

I have worked at different cultural venues across the city, and it is very rare that you'll have someone who is an access coordinator.

And that is a challenge because with other protected characteristics, I often think there's an increased understanding.

People can't see, but I'm mixed race.

I've done a lot of work around ethnicity and diversity in that regard. Everybody knows what racism
looks like, don't they?

It's a conversation that we have time and time again.

It's not to say that it's not important. It obviously is very important, but people's understanding of disabilities is so wide ranging.

You'll get people with lived experience or who've worked in that area who really understand the things that people go through, but then you get other people that they've never had a disability.

They don't know anyone necessarily with a disability. And so their entry point and understanding is sometimes completely different.

So it can be really, really challenging.

JACKIE: Yeah. You're so right, both of you.

This is such a rich and insightful and in-depth conversation because what we're touching on is those of us in disability spaces know that one of the real challenges of disability inclusion and disability and long-term conditions as protected characteristic is for the very reason we said that often you can't see it.

And even when you can see it, and if you can't see it, but you know what it is, people don't necessarily have the same experience.

So understanding that breadth of different experiences and the needs that those people have, but also what we need to do as educators in higher education and in your case, you know, in the sectors, the part of higher education you're in, cultural sectors, is well, what do we do?

How do we factor that in from the start?

And you've touched on something really important about paying people for their expertise, ensuring disabled people are part of the conversation because we shouldn't be designing anything, as you've said, about nothing about us without us, which is sort of the mantra of disability inclusion and other protected characteristics as well.

So that's really important, but also not assuming that those people will do it out of the goodness of their heart because often those people who are most marginalised because of their disability and sometimes minoritised because of it are the people who are asked to come up with the solutions.

And we've heard about the advocacy, self-advocacy.

So what are your thoughts on that, both of you?

How do you do that well?

CIARON: Yeah, the only thing I want to quickly add, and it's just to supplement that point, is actually, I think the culture sector is particularly bad for that because we have what a lot of people will call the sort of passion penalty in that the culture industry is full of people who are incredibly passionate about what they do.

And because of that, they're given well over and above what's expected of them and what they're paid for.

So it's bad everywhere. You know, if you work in banking, if you work in HR, there'll be an expectation of,
you know, working hard and doing a good job and all the rest of it.

I do think there's something unique about the culture sector that it attracts people who are so passionate that when you have people who are already working beyond capacity and then you add in the fact that they might be navigating a disability, it's kind of two things coming together.

So I just kind of wanted to say that is something that I'm really, really aware of.

JACKIE: Thanks, Ciaron.

ROSIE: It's such a fantastic point. I haven't heard that phrase to describe it before, but it is so relevant.

And I think that what you were talking about in terms of when we had our chat on the phone, you were talking about that paid opportunity for people to do an access audit.

We had a really good conversation about how oftentimes a lot of places will rely on people with lived experience to contribute to making things accessible, which is great.

We want to hear from people with lived experience, but oftentimes those people don't have the capacity to give that extra because they are already going above and beyond on whatever project they're doing.

And they also shouldn't necessarily be relied on to be the only voice for advocating on their position.

It's the same you were talking about with racism. It shouldn't be entirely up to people who have experienced racism to combat it. So the concept of a sort of paid access audit, I thought was a really fantastic idea because, yeah, people are often relied upon to do that out of the goodness of their own heart or for the experience of making things better for other people.

I think that my team, because we're in quite a sort of customer service role, a lot of are really good with people. We're very people oriented. It makes us all very empathetic.

But again, that can be something that is difficult when there isn't really anywhere that we can take that passion that offers a paid opportunity or something that is given more time for outside of our sort of contractual obligations because we don't really have the extra time and capacity to move into advising on things outside of our day to day duties because we're sort of opening up the building and giving tools to people and things like that.

And I am part of the access working group, but that's only as and when there is capacity to send me there.

It's not something that I can sort of regularly choose to go to.

And also I don't really have any of the decision making power in terms of what a layout of an exhibition is going to look like or anything like that.

That was a really interesting point. What do you call it the passion penalty?

CIARON: Passion penalty yeah. I think to respond to that, I think one of the things that I think the culture industry does very well is share that best practice.

So one of the things we've really tried to encourage the kind of some of our colleagues in that space within the museum to do is actually look and spend a bit of time looking who's doing really good stuff and try and steal the best bits essentially.

So one of the ones we've had quite a few conversations with is the welcome collection down in London.

Now I can't do this by saying they have quite a lot of money, but they are doing amazing stuff.

And I think ourselves and other organisations are often looking to them to sort of learn from them.

So when I went down to meet some of their team and some of our team have had conversations with our team as well, you use the example of actually thinking about disability right at the start of an exhibition, rather than tagging it on the end.

That is something that they do to the point where they've even had actually, they've got either, I don't know if it's either launched or it's about to launch.

They've got a exhibition coming up that's actually disabled led.

And it's all about kind of the perspectives of and input from people living with disability.

So that kind of runs right through.

And we've had a look at that to say, okay, what are they doing that we can bring back here and learn from?

And similarly, they'll be small.

In the context of Manchester, we're two of the most well-resourced and largest cultural institutions in the city.

Again, when we're having conversations with some of the smaller organisations, how do we pass on some of our best practice to them as well?

Because we'd certainly see ourselves as having that power. It's not just what we do within our own organisation. We do have that opportunity to influence policy and thinking as well.

JACKIE: Ciaron, that's really interesting because the University of Manchester now has Disability Confident Leader status. It's one of the few universities in the country. And it might not be the best framework for disability inclusion, but it's a framework that we're currently using until there's a better one.

And the better one is being created by disabled people, and I'm part of that group.

But one of the things we need to be doing as an organisation is leading in this space as well.

So learning, reflecting, making a difference, doing things differently where we haven't got it right.

And you've been very honest and upfront really about where we haven't got it right, which of course we have to be, and we know we haven't got it right.

But then we have to also lift up the sector by sharing that more widely. Because why wouldn't we want to do that? Because everybody benefits. In fact, that's a really important principle. It's not just disabled people who benefit from this. It's everybody.

Because if we make things accessible and inclusive from the design stage, as you were talking about, Rosie, then everybody is more included in terms of the consumption of that material, whether it's digital or physical.

I can see you nodding.

CIARON: Yeah, yeah, absolutely. I mean, we haven't even necessarily, we talked a little bit about racism but we haven't touched on necessarily the intersectionality of it and how there's so many different things at play.

And I absolutely agree. I think if you do have those disabilities and just accessing the broadest sense in mind right at the beginning, you create an experience that is better for everyone.

So yeah, I totally agree.

JACKIE: What are your thoughts on that, Rosie?

ROSIE: I was just thinking about how we were talking at the start about making sure we don't just focus on visitors.

And we have done that a little bit.

So I was wondering if we could maybe look a bit at staff in cultural institutions as well.

Obviously, I don't work at the museum and haven't worked at the museum, but there are plenty of things that I think that my team and my role do that are really, really big strengths for accessibility.

So I was wondering if we could mention some of those now.

JACKIE: Go ahead, yes.

ROSIE: So my job role, as I said, is quite customer service based. And because of that, there's not a lot of flexibility because we need to be in certain places at certain times for the building to be open and running safely.

But I think that a lot of the strengths of the team that I'm in, particular, are to do with very transferable skills.

A lot of it is we're very well educated and trained. Part of it is because we're a people focused role.

We're interacting with the general public, but that education and that sharing of knowledge, as you were saying, in terms of sharing best practice with other institutions, I think that we have a lot of knowledge and our roles at the Whitworth in the visitor team that is about just interpersonal relations.

So we have a lot of training that is to do with disability, to do with gender and sexuality, to do with racism, along with all of the other fire evacuation and first aid, et cetera, et cetera.

But I think that that commitment to being well educated in our roles is something that all of us have spoken about this job really sets itself apart for, which is really interesting.

And I also think because of that and because we are very sort of people focused in our jobs, there is a very much person centred approach in how we deal with each other as a team as well.

We're constantly checking in with each other and communicating with each other about where we're at.

And that's partly because we have to, to make sure that we're all doing okay and everything's okay on a day to day basis.

But also it means that there is a, not just an encouragement to have open communication about our experiences, but a demonstration from our managers down to someone like myself that open communication about whether you are struggling with something or not is an acceptable and important thing for all of us to be effective in our roles.

And I can say that this is my first permanent job role since graduating university.

I did little sort of short term things here and there between graduating and between getting this job.

But I truly feel like the job is as accessible as I could possibly hope it to be given the nature of the role.

There are things that, as I said, I don't have 100% autonomy on where I am and what I'm doing day to day because we need to be in certain places at certain times.

But that sort of person led approach, listening to people's experiences, trusting their experiences and their
knowledge of themselves is something that the team I'm in does really, really well.

And not just like peer to peer level, but our managers demonstrate it as well.
Having open conversations is important from the top down.

And I just, yeah, I thought that would be a really interesting thing to bring up considering you were talking about best practice and sharing that from a sort of institutional level in terms of what we look like as the experience we're giving visitors and things, but yeah.

JACKIE: Is that echoed in the museum? I mean, you're talking about the cultural working practices, aren't you, within the Whitworth Gallery and the fact that it's modelled from the top and you feel comfortable, but it's also, you know, it's across the piece.

It's not just at one particular level, which means it's embedded as a practice, which is really interesting.

So would you say, I mean, to what extent is that replicated in the museum?

CIARON: Yeah, I'd say it's really very similar.

I think I say this in the context of what we said at the start about not expecting individuals to have to do the pushing themselves.

But I think the thing that I've noticed being in that role a year or being in this role a year is how much we've learned from working with colleagues with disabilities.

So I've learned myself an incredible amount about how to support colleagues and how to have those really open and honest conversations.

And we talked a little bit earlier about how you have those conversations.

And I think there's always an inherent fear. There's an inherent fear of saying the wrong thing or doing the wrong thing.

And I think one thing we really hope and try to achieve is, as you said, Rosie, is a culture where you can have conversations, you know, if you're asked to do something that you might struggle with or that you're not comfortable with or there's any number of reasons linked back to your disability that make it more difficult, we will really try and think about ways around that.

And I think to hear it the way that you feel that you're able to do your job in the most accessible way possible, but there'll always still be things that are challenging.

I would say it's very similar.

I think what I am really interested in I think, I suppose going back to your point around naturally you focus on visitors, but wanting to talk about the team is obviously how linked they are.

And we talked about, one of my colleagues uses the phrase, you know, getting your own house in order actually makes you a lot better of an organisation externally.

And I think that counts for a lot of different things, but I think disability is the same.

So we have, for any of the listeners who don't know, we as part of our museum, we've got something called the top floor, which is called our Environmental Action and Social Justice Hub.

So we've got different organisations working up there of different scales. The largest one we've got is an
organisation called Pink College. That's a neurodivergent college that's an education provider that started in the museum and is now in about different organisations and they're incredible.

But again, by working with them internally, we've become a much better organisation externally as well.

And I think they've really helped us understand what it means to be a young neurodivergent person in Manchester today.

And as a result, a lot of our practices and the ways that we support our staff have changed completely because we have a much better understanding of those needs and those challenges and what works and what doesn't work, but we could always be better.

I think, again, it's kind of got a bit of a visitor focus, but we are really keen to shout and celebrate our wins.

And I know that when we look at from the museum's reopening in February 2023 through to now, one of the areas that we probably haven't done as well as we'd like to is around disability and is around that representation piece.

So we really need to be really honest and look at actually what's working and what's not and learn from good practice really.

JACKIE: Brilliant. And that's what this conversation is a starting point for.

It's about, you know, we've got limited resource, we've got limited personal resource when we come to work, there's only so much we can do.

But it is about opening up the conversation and the forms for people like yourself, Rosie, to come and talk and Ciaran for you to come and talk and listen.

What has really struck me today, and I'm really pleased with how it's come out very naturally, very organically, is, you've both been very honest and open about the parts of the organisation you work in
and the listening approach.

OK, so you've talked, you've only been in post for a year, right?

But think about halfway you've come in that year in terms of listening to disabled or people with long term conditions, learning from that, making changes and then thinking about what more you can do.

That is a very important part of us becoming a much more inclusive organisation, but disability inclusive organisation in particular, because if we don't listen, we're not going to learn, OK?

If we don't reflect on what we're getting right, what we're getting wrong, then we're not going to become that disability inclusive organisation we want to be.

And then from you, what I'm hearing, Rosie, as you're saying, and this has to start culturally within
the part of the organisation you work for.

So I know you've probably got other things you want to say, but, you know, I've got two examples
of good practice here, right?

Both of you are talking about disability inclusion and the steps that you've taken to open a conversation about it and to do better.

What about the people who haven't been quite so fortunate that might be listening to this, you know, people who don't feel for whatever reasons they want to share, they might have fear about sharing, they
might feel discrimination, whatever.

What do we need to be able to reassure people, me in my role as disability inclusion lead for the university, you from your personal experience about where people can go and get that support, what would you say to other people listening who may not be quite where you are yet?

ROSIE: Are we meaning people who are part of the University of Manchester?

JACKIE: Yeah. So thinking about it from the perspective of the podcast is predominantly talking to people who are employees at the University of Manchester or postgraduate researchers in the first instance.

We're going to do something with students, but that's separate.

How can we ensure people who work here or are studying here feel that they have, can reach out for the type of support that you both have provided and received?

CIARON: I've got something to kick us off if that's okay Rosie.

I think one of the things that myself and Rosie spoke about the other day when we had a chat was about how you build in processes which allow time for learning on this.

So the example that we were talking about actually was about job roles.

So when job roles come up, there's always quite often there's an expectation that you're going to get someone who needs to hit the ground running.

And that really works against trying to diversify and I use diversify in a really broad sense your workforce.

Now, if you're looking to recruit somebody for a new position or you're looking at someone who might be looking to progress, if you're expecting them to go into that role and be able to do it 100% on day one, you are automatically limiting the scope of what that pool looks like.

So we talked about this a lot and I think what a bit of my advice to colleagues would be to slow down.

And I think if you have more of a long-term plan of what you're trying to achieve and you build in more of a sort of buffer, I suppose for want of a better term of how to get there, you can put more processes in place that will make your role, your job, the thing that you're working on more accessible because you've got the time to do that.

I think that's one of the ways that I've always noticed these sort of things fall down is it's all it's great saying, okay, we want more people with a range of disabilities working in senior roles.

How do we make that happen?

But then automatically when we go back to recruitment, more often than not that goes out the window because you need the person's left and you need somebody to come in and start yesterday.

So that would be one of the things, a real practical thing that I think people can do is just build in more time for that and be more open to recruiting.

And actually we talked about this, but that isn't just for people with disabilities.

That might be class, every other type of protected characteristics can benefit from understanding that actually you might get somebody amazing who just needs that little bit more support or to work with you on taking down some of those barriers that allow them to do their best job.

JACKIE: That's a wonderful way to describe taking down those barriers.

Rosie, have you got any further thoughts on that before we wrap up?

ROSIE: Yes. Taking down barriers also relates to sort of social versus medical model of disability, which I'm not sure if you're aware of, but I know that you will be Jackie.

The medical model of disability is very much based around diagnosis and cure.

The social model is based around the barriers within society that disable people from engaging with things.

So that's kind of what you're talking about.

They're removing those barriers in the workplace to help give people more breathing space to kind of settle into things, to feel like they have the capacity to advocate for themselves, to speak up about what they need.

I was also going to say from the perspective of someone who has a health condition, something when you're talking, Jackie, about people not feeling like they are at that point yet where they can advocate, something that really gave me or sort of empowered me to have conversations as openly as I do now.

Obviously it's not a quick process.

It's been years of building up confidence and having conversations with different people, but finding community.

And I know that at the university we have the disabled staff network for staff members.

I'm sure that there will be societies and things for students that they can find community in.

We have things like occupational health, et cetera, that provide more infrastructural support that necessarily your colleagues.

But finding that community, whether it's in person or online, is something that really helped me feel more secure in myself to advocate for myself in person.

Listening to things like this where people are speaking about their personal experiences.

For me, it was watching people online because I'm from the age of sort of social media and the digital age of growing up with the internet, watching people talk about their personal experiences dealing with disability on things like YouTube and things like that really helped give me the language and form a sense of identity so that I could then advocate for myself better.

So I would say that I would encourage people to find community somewhere, to find that collective identity that they can get support from because that enrichment outside of your job role will only make you feel better and more secure in your job role and might even make you realise that your job role isn't for you and that you need to move to a different one that is more accessible.

So that would be my little tidbit of what to look for and what to do as an individual if you are struggling for advocating for yourself in your job role or you don't quite feel like that space is safe enough to do so.

JACKIE: Thank you so much for sharing that.

And I don't know if you know, you are modelling disability inclusion for people who aren't quite there yet.

So thank you so much for doing that. That was very powerful. Ciaron and I both sort of nodding.

I feel very touched by that, Rosie. Thank you very much.

So we've talked a lot. Okay, we've talked about some of the challenges and the barriers.

We've also talked about some of the strengths and I love that sort of, you know, the passion side of what you both do and the art side of what you've done.

That really resonated with me, sort of, you know, bringing a voice to it or a colour or shape to it in a different form using art.

What would you like to say by way of sort of your final comments?

Because as you know, we have these conversations, but then we move to action.

So each of you now has the opportunity to ask the other a question before we wrap up.

So who wants to start?

CIARON: I'll go first.

JACKIE: Thank you, Ciaron.

CIARON: Rosie, what one thing do you think would make a positive difference to your experience at the university?

ROSIE: I was thinking over this question for ages because I didn't have an immediate answer, which I think speaks volumes again for how my team is and how well accommodated and cared for I feel in my work environment, which I know I'm in the minority for, unfortunately, but I was then kind of reverse engineering the question to think about what makes my team a great one.

And I think a large aspect of that is the education factor that we talked about.

So infrastructurally, because we have a lot of education and training in our job roles, it means that I'm not pulling the weight as a disabled individual to educate my colleagues, to educate my managers on my experience, which I know is a lot of people's experience.

They're having to go in and say, this is my experience. This is what it means for me. This is what it general in society. These are the things that I need.

Whereas a lot of that isn't even stuff that I've had to touch on because there is an automatic sort of ground level understanding that people are bringing to the table to have those conversations with me.

And I think that when I say that I can have very open conversations at work, it's because there is an infrastructural, very rigorous support system there in terms of the education that my colleagues have received, but also in terms of the support that's there for me when I need to take absence or if I need reasonable adjustments.

All of that is very rigorously maintained and everyone's very aware of it.

So the onus isn't on me to educate other people or to find that information because there's so much mental and physical labour and admin that disabled individuals have to do to get accommodations a lot of the time.

So in terms of reverse engineering that question to say things that do make a positive difference to me that I would advise other people to take up, that would be where I would direct it would be that sort of having an infrastructural support system there so that people can just go about their day being people who happen to have a disability, rather than their disability being the thing that they constantly have to lead with in order to feel like they can be safe in their working environment.

JACKIE: The social science part of the social science research part of me thinks we've got to capture that in a case study, right?

There's something really magical there that you've just described that is and Duncan Ivison our Vice Chancellor talks about this, how do we make more transparent some of the magic that happens behind the scenes and what you've just described sort of needs to be shared, not just in the cultural heritage part of the university sector but more generally because if it's working well there, there's a very good chance it could work well elsewhere.

So I'll be following up with you on that.

Right, Rosie, you get to ask Ciaron a question now.

ROSIE: Okay, so Ciaron, what one thing will you commit to do as a result of this conversation?

CIARON: Okay, thank you. So I think it would be really easy for me to lean straight into that education piece that you talked about.

I think we're doing some really great work.

There's definitely something that we can learn about that sort of how do you bring in a base level of knowledge experience and therefore support around disability inclusion and access so that it isn't just on the person.

But I think what I really have been interested in is how much you've talked about the fact that disability awareness, disability inclusion is quite often an afterthought.

So the big thing that I'd like to really go away and think about is how we can not even just put it at the start, just reach a situation where it just is.

I've got a colleague who does a lot of work around decolonisation and she talks about wanting to move the museum to a place where that kind of decolonial practice just is.

It's not a thing over there or a thing over there.

It just is what we do. And I'd really like to think about how we can do that for disability inclusion as well.

It's not as simple as taking that box at the end and putting it at the start.

It's actually, there doesn't need to be a box because it runs across everything we do.

Now, I apologise, that's a little bit washy, but that's what I really would like to commit to go away and doing.

Just thinking about how, as an organisation, we move to the point where disability inclusion is just something that's everybody's responsibility and it's just implicit in everything we do.

ROSIE: I think that embedding it at the start as well, the benefits from that will just trickle down through everything rather than it being at the end.

JACKIE: Absolutely. I'm going to sum up in a minute, but one of the most used phrases on these episodes is, I just didn't think.

So we've had lots of people talk to somebody with lived experience or lived and living experience of disability or long-term condition and the person sitting in your chair, Ciaron, so not you, but they often say, well, I just didn't think about that.

And I think for me, the big ask for everybody is to just think about it.

Think about it at the start, not at the end.

ROSIE: It's that mental labour that I just mentioned is that you, I think that one of the things when I was talking about alienation from my peers in school, even though I had fantastic friends, is there was so much that I was having to think about every day that my peers is not even crossing their mind at like 15 years old when you're doing your GCSEs.

So, and obviously that persists throughout adult life as well and into the workplace.

So that mental labour, taking that mental labour and making it everyone's shared labour rather than just the labour of the disabled individual is really important.

And I think when you're talking about embedding access from the start really takes a lot of that weight off of the people who have the lived experience.

JACKIE: What a beautiful way to sum up and finish this fantastic episode.

I want to thank you both so much for coming along today.

I know you've got an appointment now Ciaron, so you've got to go.

Rosie, huge thank you from me for reaching out and it's been great to have this conversation with both of you.

Thank you.

And next we move to action.

Okay, so thank you.