Episode 6: Inclusive research, a key to unlocking a better future

In our latest episode of Embrace your Otherness, we dive into the importance of inclusive research with Gillian Mason from HMRI.

Gillian Mason explains why it's essential to involve the individual's perspective in the research process and how it can lead to better results. You'll gain valuable insights into the importance of co-design and learn why it's vital to answer questions that are relevant to the person being researched.

So, join us for this engaging episode and discover why inclusion in medical and health research matters.

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Full episode transcripts below:

Brad Webb: Castle Services operate from the lands of the Darkinjung people to the south, the recognise people to the north, the Awabakal people to the east, and the Wonnarua people to the west. I acknowledge the Traditional Owners of the lands on which we are meeting this morning, and pay my respects to the Elders past, present, and emerging.

Welcome to the latest episode of Embrace Your Otherness, Castle's inaugural podcast. This is a space where we have both casual and in-depth conversations with disability community members, leaders, and activists about disability, identity, culture, work, and rights. With a real emphasis on challenging people's perceptions and raising awareness about marginalised identities.

My name is Brad Webb and I'm honoured to be both the CEO of Castle and the host of this podcast series and I'm super excited to be welcoming Gillian Mason to join me as today's guest.

When you Google Gillian Mason, do you know what comes up, the top search result?

Gillian Mason: Well I guess it's different, isn't it for each of us? I have done it. Tell me.

Brad Webb: Well, let me read to you what came up when I Googled.

Gillian Mason, manager for Stroke Research Register Hunter and Clinical Researcher Centre for Rehab Innovations, University of Newcastle and HMRI, has been recognised as an inaugural 2021 Brilliant Women in Digital Award, presented by Telstra Health.

The award initiative has been presented to 25 women who showcase excellent technical expertise, and have made contributions with significant impact across the health aged care, medical research, and technology sectors. As a proudly disabled and chronically ill physiotherapist, Gillian has used her more than 15 years healthcare experience from both sides of the bedside to transform the way that people's lived experience is valued and included in the design of human-centred digitally enabled accessible health systems. That's a pretty awesome description Gillian.

Welcome to the podcast.

Gillian Mason: Thank you.

Brad Webb: I am going to start by asking you, can you tell us how you would describe yourself and how close that description reflects where you are today?

Gillian Mason: Sure. And look, thank you. It's really an honour to have won that award and I'm thrilled that that comes up first in your Google search list, because I was laughing thinking it's probably a daggy cat tweet that I made if I was to do it with the way an algorithm might steer things towards me.

Yeah, look, I'm really proud of that award because it's recognition that work in improving how inclusive health systems are and medical research systems and infrastructure and culture is important and valued.

And valued as part of mainstream efforts to digitise and digitally enable, you know, a great health system. So yeah, I'm really proud of that. But, I would describe myself as someone who's a physiotherapist. I'm a clinician who's worked in healthcare research. I'm a queer person, I'm disabled, and I have come over lots of years to a place where I'm really proud to be a disabled person. That's taken a while. So I live with a couple of chronic illnesses and a genetic disability, a genetic connective tissue disorder that you know they all culminate together to change ways about change things about the way my body works physically.

There's some differences in sensory things that I need to deal with – and I you know manage fatigue. I also have ADHD and I say these things because they are like, they're really important, they impact on the way that I function, and they also don't just impact in a negative way, but they are part of me. So, you know, they determine how I function in the world and how my brain works and how, you know yeah.

Brad Webb: There was an interesting, again when before as we prepared for this podcast, you were talking about your experience becoming a physiotherapist. And the way in which that was framed to you when you were aware of your illness and your disability. Can you share a little bit about that experience and how that's spurred you on?

Gillian Mason: Yeah, sure. So I was doing a physiotherapy degree here in Newcastle. I think it was my second or third year where I really started to notice there was some physical problems going on for me and sought healthcare. I got a diagnosis of this connective tissue disorder, which is called Ehlers-Danlos syndrome snd the first doctor who had gotten to the bottom of what the issues were just said to me, "look essentially paraphrasing here, "set your expectations very low."

Like look towards getting a job in administration. Not that there's, you know, there's lots of very challenging jobs in administration and their skills I do not have, that's not my strong suit whatsoever. But essentially stop doing your physiotherapy degree, you will not be able to think in a dynamic way, you'll have too much fatigue, physically won't be able to manage a job that really challenges your you know challenges your brain, challenges your body, you won't be able to be on your feet for long periods of time.

So yeah, just make some decisions now, bad news. And it's just because I was exposed to like medical research through university and I had this, you know, health literacy that perhaps other people wouldn't have in that situation. And I went and sought out and read some research and realised that the advice that I was being given was based off the level of evidence which is basically some people's opinions. So very experienced clinician's opinions, but it wasn't a level of evidence that was based off many years of high level research and clinical trials. So even though it was the best advice that that person could give 'cause it was the highest level of evidence, they didn't present it to me that way. They didn't say, "we don't know. "I think this, there's other people who think, you know, "perhaps this is what you should aim for, "but we haven't proven that that's actually the case."

So I also I was 21 at the time, which is the perfect age to just not really accept authority and listen to people. And I made a decision that, well if there wasn't any evidence saying I couldn't do those things, then I'd just carry on, seek some other advice and I was able to get rehabilitation and kind of, I also was in that stage of development where I felt it was very important to overcome all of this news that had been given to me and overcome my disability, pretend it didn't exist, make sure no one else knew about it, and really push through.

You know I got really involved in competitive cycling when I had to quit my jumping type exercise 'cause that wasn't good for my joints. And so I don't regret any of those things, but I so wish that it could've been presented to me in a different way and that I didn't feel shame and like I had to pretend that I didn't have this illness and these disabilities. And the only way to be in life was either to be pitied and to lower your expectations, or to you know position yourself as kind of like a super crypt and get on and overcome everything, you know and pretend that the disability didn't affect you in any way.

Brad Webb: Was that pretence that you said you were pretending it wasn't there, was that pretending to the outside world as well as yourself?

Gillian Mason: Yeah look absolutely both.

Brad Webb: Right.

Gillian Mason: You know, I was finishing my physiotherapy degree and moving into the workplace as a professional for the first time. Like I've been working in the fitness industry, which also is lots of brilliant things happening in the fitness industry, don't get me wrong.

However, there is such a focus on image and such a focus on aiming for some perfectionist ideal. At least there really used to be, I mean we're talking, you know, 18, 19 years ago now. And in the workplace, you know it's bad if you have to take a sick day. And especially working in healthcare, it was all of my training and all of this expectation that we as health professionals, we are the role models and the people who are the holders of knowledge. And you know you must be well and not talk about the illness that you're living with or the disability that you have, you don't wanna ask for special considerations.

There was a lot of that kind of culture that still persists and I wanted to do everything I could to prove them wrong and also just to carry on, push myself, make sure that no one would know. And because when I would tell people in my social circle, or employers, or colleagues, the first reaction when you tell someone that you've got a chronic illness, that basically you're sick or you have a disability, it's instantly sadness and loss and pity. That's it just always is. Even I will find myself having these this internalised ableism. And these reactions too when someone share this information with me, because for some reason that's stronger than thinking about the context.

Someone might say in passing or because they have a need, you know I have this disability or you know, when we go, I'm immune compromised. Like when we go out we need to eat outside during the pandemic, for example. Or make sure you book somewhere that has a wheelchair access 'cause my friend is coming. The initial reaction might be, oh your poor friend. That sounds like that's really hard. Rather than just receiving that information as something that a fifth of the population deals with disability, should be quite normal. If we're talking about access needs, there's no reason for someone to think about that and have this kind of reaction of sadness or pity.

Brad Webb: The pressure though to maintain that facade in the face of that must've been quite challenging. But I'm not going to take that further at this stage, I really want come back to then that setting of expectations that you could've, your career could've derailed at that point in that conversation where a lesser person may have said, "actually you're right, I should give up, "I should refocus, I should reconsider." And that's a really important shift I think we need to take in society to create the space in which the expectation isn't that instant reaction.

I mean that's the social model of disability in action. It's spurred on some of your work and some of your, can you tell me a bit about that, the work you're doing now?

Gillian Mason: Yes.

Brad Webb: Which seems to me to be almost a direct line from that experience of ..." okay now I need to open up and prove for help people prove that people with disability actually do have scope to be successful, and there is research that demonstrates that".

Can you share a little bit about that?

Gillian Mason: Yeah I can.

I want to pick up though on something that you said absolutely in a well-intentioned way. We're having this conversation about saying, "well, but you you didn't do what they said "and you didn't accept the low expectations. "And a lesser person may have." That's just this way we think about it isn't it? So if you manage to overcome it or get past it, there's somehow a moral kind of waiting or value put on that. Whereas I think the reason, and I've had I've four years thought it was because I'm really tough and I really valued that and I love thinking I'm better than all of this illness.

You know, I'm, I don't want a disability, I don't want that 'cause I see that as less than. But it wasn't that I was a better person, it was that I was in the middle of a physiotherapy degree and I'd learnt about research. And so I was able to question, like I had the resources and I had the knowledge. So it was the context, it really was. As much as my ego would like to think it was my brilliance in that moment. And that's not to say then I haven't gone on and done things in my career which I'm really proud of, and which absolutely are through grit and hard work. And because as women we shouldn't say, "oh, we are just lucky" or "it was just luck that we ended up there."

I've worked hard and I'm proud of achievements, but in that moment my career didn't derail because I had resources and health literacy and parents who could pay for me to go and see another specialist and get another opinion. So and I mean that's part of the work that you are doing and the work that I'm trying to do now. It's making sure that people have the resources and that there's not these expectations around them which make it so much harder yeah.

Brad Webb: So tell me about your work.

Gillian Mason: Yeah so I mean I told you already that I'm a clinician and a physio, but now that really kind of is the smallest part of what I do. I use that clinical background to help to inform what I'm doing, but I work in at Hunter Medical Research Institute as what's called the community and consumer involvement lead, which is kind of big words for saying how do we include people who live with illness? The illnesses that are being researched, how do we include the community in the work that we're doing? So this isn't about only trying to find people to take part as kind of participants in the research.

It's about figuring out how we assemble teams of people who have the right expertise to solve the problems that we're trying to solve. So alongside scientists, I help to connect people who understand who have been through that health system that they're trying to change to improve, who can bring that expertise of knowing what it's like, all the extra barriers that come up against a person when they're trying to follow through with a treatment or something like that. So it's a role that is a little bit of matchmaking, but mostly about translating between people. And so making people understand each other's needs and essentially helping the process of putting together high performance teams of people with the right expertise.

Brad Webb: So just to be clear for me then, you're talking about the point prior to or around the time of the research design as well?

Gillian Mason: Yeah.

Brad Webb: Not just, okay now I'm a researcher, I've defined the research question that I want to answer, this is how I'm going to approach it. You're almost talking about co-design or or participation bringing lived experience into that even what is the question?

Gillian Mason: Yeah.

Brad Webb: Is there an example where you've seen that work really effectively?

Gillian Mason: Yeah there's one I'm thinking of. There's actually a lot of really brilliant co-design work in consumer or patient or community-led research happening now. But this program called the i-Rebound after Stroke program that's just been launched last year, that's been a piece of work that started as a research project looking at how you could use telehealth to help people who had had a stroke to prevent them from having another one basically.

If you've had a stroke you're really likely to have another one within the next couple of years the research shows. And what you need to do to prevent it is all the boring and hard things like exercise more, eat better food, all these things that anyone has trouble with. But whilst that initial project showed that all these things could be done, there weren't people living with stroke involved in choosing how you would measure that.

Brad Webb: Right.

Gillian Mason: So therefore then when it's designed, it kind of meets the clinician's needs, it meets the health service needs, and we've figured out how we can do that without it costing more money, and we can deliver it to more people, so that's good. But the outcomes weren't really what was important to the person with stroke, and it wasn't able to include lots of different people who have different stroke related disabilities because they kind of weren't thinking about that.

So how it's evolved over time is bringing people in not only to talk about how satisfied they were with the process, but making sure that the way the information was communicated to people was easier to understand, sounded actually interesting, wasn't just kind of blaming the person with stroke for not being very active. 'Cause frankly who is? It's not a widespread problem that everyone's really fit unless they have a disability or had a stroke. So it's about making sure that the research really feels relevant and is designed to meet people's needs. Therefore, they ended up being not just a consumer advisory panel, but people employed as experts, subject matter experts to develop something that works for people who only have use of one hand mostly when they're cooking and involves hacks.

The material is presented and it's like it's presented to people with stroke by people with stroke. It really isn't this model of saying "health professionals says this "and if you don't do it and you have another stroke, "well basically we told you what to do." It's changed things a lot and it's so popular now, it's been very practical, it's practical to access.

Brad Webb: There were two things you said and I just wanna dive into them. They're related that one was the concept of a research advisory panel, but then you immediately talked about employed. There's an important distinction there isn't there, between being a panel member and being seen as advisory versus actually being a paid member of a team. Do you think that's an important part of this process?

Gillian Mason: It absolutely is yeah. And there's a role for all of these different things, there absolutely is. But you can't create an environment, when we were talking about inclusive environments, you can't create an environment where people's expertise is going to be valued in the same way if some of those people and how it has been the researchers are employed in a role where they've got job security, they're thinking about this all of the time, and they're paid.

If we bring in people who live with the condition and they're there for a couple of hours, they've volunteered so it's really, it's cost them money, 'cause they've had to pay for transport, whatever else to come. And then they're not given time to get their head around the whole context of the project, what's going on. So you set up this, if you do it that way, you set up a power dynamic that doesn't allow equal sharing of ideas. And it also, it continues to marginalise the person who you're bringing in as the supposed lived experience expert. So where there's lots of different ways that patients and consumers should be employed in roles as part of teams, and there's a place for advisory committees. Yeah depending on what needs to happen.

Brad Webb: There's so many dynamics that play in a research project. One of those is the funders. How have the funders at a national level of research, and I'm talking to the National Health and Medical Research Council and the big players that have got funding, are they driving this conversation about truly inclusive co-designed research?

Gillian Mason: Look, they are driving a conversation yes, and there is more importance being put on it. There's guidelines, there's a commitment to doing it better, but it's being led by patients and consumers. There's a movement around doing work that doesn't just talk about being inclusive and doesn't just make sure that you've got someone on your team, but it actually up skills researchers and changes culture so that we work with people in accessible ways and in inclusive ways. So it's not just relevant for people who live with disabilities, it's about making sure that when you bring people in that you're creating a workspace where everyone has the knowledge that they need and the time that they need and the resources that they need to work together. There's extra layers on top when people have disabilities.

But the thing there is that what's really frustrating to me, what I'm really trying to work on in a few different roles is not just expecting that the research participants or the consumers will be the ones with the disabilities. 'Cause the fifth of Australians have disabilities. So we need to be thinking about this in terms of accessible ways of working for all of our healthcare workforce, all of our like all work force. So me being the person or being a person who lives with disability and being open about that and proactive about talking about it is tiring, but it's really important.

Brad Webb: I think about this a lot from the perspective of physical inclusivity and being a physically inclusive city. And I'm talking about for people in wheelchairs, being able to access buildings, to access facilities, to access the community. That that is not just about a person who is a wheelchair user, that's about people with prams, that's people with general mobility issues.

It's actually a benefit to all of society, yet it still gets framed as disability inclusion as opposed to community inclusion. And I think it's important that we've got a reason to do that and a perspective on that. But yeah I think research strikes me as a similar thing. And I wanted to jump to the researchers themselves. How open have researchers been? Because having a panel an advisory panel is a very different proposition to actually redesigning your entire research question, research project around an equal member of the team, bringing that perspective to the table.

Gillian Mason: Yeah, so researchers are really receptive. And I think there really is, not I think, I know, the position that I'm working in now at HMRI it's a new one. So six months in what I've learned is that there's a lot more involvement of consumers and the community than I think most people would think. We tend to kind of really like focusing on the problems which are there to be solved. But researchers are receptive.

The way that research works, the research environment, the funding landscape, genuinely makes things really difficult. And it's been kind of within this role that and just helping people to rethink different ways that they work. So whilst they're receptive, it's been really hard to put aside time and realise that you need to up skill, and that you can't just keep doing things the way that you are doing if you're trying to bring in new, essentially it's like a new profession, having consumers who are, or people with lived experience of something, who are going to come and join in in your team and have a new role. So I'm kind of, I've got this hope because I can see where in that without the new professions have started off, it just takes some time. So they're receptive, they need to learn skills and stop thinking about their consumers as vulnerable people who really need to be, they need their access needs to be met, they need to be put in a position where it's possible for them to actually do the work that they need to do, give the advice. But not kind of treated like someone who's there to do a bit of charity. And yeah there's a lag in the culture catching up to realise that these people are coming in to just be part of the team. And we need to accommodate them yes, but their expertise is really valuable.

Brad Webb: Have you seen the kind of epiphany moment of a researcher who suddenly encounters disability in their life, either themselves acquiring a disability or a family member that has actually been a game changer or shifted their perspective and the influence that has on the culture around them?

Gillian Mason: Yeah, yep. And whilst that's has really useful when that happens for someone 'cause they can see, and it's so incredibly frustrating that it takes that and that we aren't just used to kind of believing people, and having this idea that disability is just a normal part of the human existence. Yeah so people learn lots of things in lots of different ways I guess.

Brad Webb: I should've disclosed earlier too, my own involvement with HMI over the years and I was in the establishment of the community research register in its very early days.

It's so exciting to see that it's evolving to a point where it's less of that passive people coming into participate, which is really important, and we've had been so lucky in the Hunter to have that degree of engagement and involvement and willingness of people to participate in research. But now to this active engagement where people are contributing to the question that surely has to shape the future of research and research outcomes. It's pretty, I think that it's so fantastic.

Gillian Mason: Look, it's exciting and it's not, it shouldn't be surprising because in other industries in the rest of life we are more used to more kind of democratised decision making, or we should be, that's what we kind of aspire to be. And in other industries, change is really led by consumer needs and community needs rather than a preconceived idea of what we need. And a healthcare is so incredibly complex. And people with disabilities have been left out because we haven't been valued as someone who I guess is normal and well.

We're accessing the healthcare system because we want something kind of either improved or fixed or we want some suffering to be reduced. There's a reason why we're coming in. But seeing it's really exciting seeing this shift in thinking and in the way that things work away from that idea that disabled people are only coming to see us because they want to be fixed and they want to be made normal. It's like, no let's just make sure that the whole system is accessible so that we can come in with whatever need that we have.

Brad Webb: Yep yep.

Gillian Mason: On that day like everyone else.

Brad Webb: 'Cause sometimes it's just purely about being able to access everyday healthcare, it's not about fixing anything or--

Gillian Mason: Oh look.

Brad Webb: Or addressing an illness. It's actually just being able to open the door.

Gillian Mason: Oh if I wanna go into say my GP's on leave and I wanna go in and see someone else at the same practice and talk about a routine sexual health issue. Particularly something where if they read my medical file beforehand, they don't think I'm coming in for just something very normal.

You need to kind of backtrack and go, how will I present this to them? Because they're going to think that I'm coming in to talk about all these other big things and they must give that the appropriate amount of reverence almost and express how sorry they am for me that I've been through all of this stuff. And you're like actually no, I just need to talk about this thing.

Brad Webb: That's right.

Gillian Mason: Just this thing.

Yep and it makes it harder on many levels 'cause we've gotta think disabled people live in the world like everyone else and are subject to marginalisation for lots of other things too. Like already approaching that health consult, I'm thinking, all right, this is going gonna be a heteronormative conversation. I'll be asked about my husband, I've gotta correct people so many times. Before and then finally can we please say, no I'm not here about these disability things. No I don't need your pity about that. Just really wanna talk about this thing.

Brad Webb: That's right and there's narrow, you've got this narrow consultation window as well.

Gillian Mason: So it just, it stacks up. And when we're creating spaces that are inclusive, we need to allow people to come and let you know what they're there to talk about, what they're bringing, but also knowing what their access needs are. So we could almost take these two ways. I'm thinking you've asked about creating ways of working in research with people where researchers do need to ask people what their access needs are. And they need to know a bit about someone's, if they're inviting them into a cancer trial, they do need to know that they've experienced kind of the right type of cancer to make them the expert in that study. And they need to ask them about like are there do you have fatigue? Are you in a chemo cycle? What needs do you have? But they don't need to, and they ought not be needing to ask the person more personal questions about their health all the time and checking in and expecting them to share all this extra emotional stuff that they wouldn't be asking their other colleagues.

Brad Webb: I was thinking about that, something you said very early about the sadness and the pity that comes on me. I mean if that's the filter that every interaction starts with, oh okay let's put on some sadness, that's a bit, let's start through that filter, as opposed to just getting to the core of the issue. That's part of the issue that we're talking about here.

So if a person with disability's saying, "this all sounds fantastic and I'm really want to embrace "this opportunity to contribute and to participate," what's their entry path to a conversation about supporting research and to being an active participant?

Gillian Mason: Yeah, well they ought to be able to find us really easily. We're doing some work around that. I mean if someone wants to get involved in Hunter medical research institute's research, they can email, pick up the phone, and we can start a conversation. But what we need to do, we're in the process of doing it, what I'd love to see more of in the health system is to have an entry point that shows you that you are welcome, that has an Auslan video of Auslan interpreted information right up front so you can decide whether or not you wanna get involved in that thing.

It should say upfront, "please let us know what access needs you have." And all of the entry points need to be accessible, not just practically but accessible because it looks like you will belong there. And we can aim to meet your access needs. Like we need to actually do more to welcome people in I think rather than it being up to people with disability to think okay today I've got the energy to ring up and see if I can be in that trial. And then ask them if they have a wheelchair accessible venue. And then ask them if I can have an interpreter. Like it's lots of permission seeking all of the time. I want people to feel comfortable and welcome to approach us. But really think it's up to institutions, organisations, to do more to seek out people and be welcoming.

Brad Webb: Quick plug, what's the website people can jump onto if they are going to actively reach out to you?

Gillian Mason: Yeah so if searching for Hunter Medical Research Institute is probably the easiest way. I'm having a mind blank as to what the web address is, but if you search for participate in research, you'll find my contact details and some information there.

Brad Webb: Yeah that's excellent. I think I'd certainly like to encourage people, we'll include a web link with the podcast so people. My memory says it's hmri.org.au, but we'll double check that for you. We've talked about your experience with a less visible disability, and we also know people have a very visible expression of their disability, and there's certainly differences.

So if we can focus on people that have less visible disabilities, how can a person in that situation broach the conversation about accessibility, say in the workplace or in general, particularly if they're carrying that sense of stigma and wanting to maintain their kind of, the persona that that they're not a person with disability. 'Cause there's a tension there that you've obviously navigated as you've gone through life and you talked about your pride now in being able to own that. But what's the starting point do you think for people?

Gillian Mason: I wish I had a really confident one line answer. I think the starting point is to try and talk to some other people personally who've done it before. The starting point should be any organisation's HR department, especially if there's an extra part of that department that clearly is for access needs and disability related needs or work health and safety. But it is important to try and get the language right and not right so that you can tick the right boxes that they'll care or that they'll have a thing for you, but right that you feel comfortable with it. 'Cause making a decision about whether to disclose something that you don't need to, it has ramifications, and they're not always good ones. If you're a wheelchair user.

Brad Webb: It shouldn't be a high risk conversation.

Gillian Mason: It shouldn't be.

Brad Webb: But it can be.

Gillian Mason: The reality is now that it still is, and I want to encourage people to do it, but to figure out what language is going to be safe for you to use in the workplace. If you're a wheelchair user, you don't get that luxury I guess of deciding whether or not you're gonna tell someone. But if you know or if you realise that you have access needs that need to be met, you need to figure out how to tell. And I've been in situations before where because I wanted to be open and I wanted to share something 'cause I had needs, I needed flexibility. I'm thinking about a few examples.

Flexibility with my start time to manage around health appointments and chronic disease management stuff that I needed to do. I'm not a morning person. But it's not a preference when I need to start late and have flexibility, it's a disability access need. So I was trying to figure out with my managers how to talk about there's these autonomic nervous system issues that I have, whereas if I get up in the morning and I rush I'll have blood pressure control problems all day. I might have gastrointestinal problems, there will be things that crop up for me if I don't manage my mornings well that mean that I'm not productive later in the day. But when you start to unpack that, 'cause they don't, it's unfamiliar, it's maybe not quite believed.

The more you tell them then they end up having this pity sorry response again. And then you're doing all this emotional labour instead of just getting on with your workday. And then it feels like you have to over explain things all the time. So the entry point to me is figure out how you're going to frame it. Talk to your doctors about it if you have access to doctors that understand. I've used job access before.

I know there's different services that you offer as well. There's advocacy services to get your story not straight 'cause you're not telling a fib, but get your story lined up so that you're comfortable to share, I have these access needs, it's around this medical condition or it's around this disability. How can we make that work for the team? Without apologising for it 'cause it's not your fault.

Brad Webb: You talk about that emotional labour.

And the work and the emphasis that on the person with disability to take that work. If one thing comes out of these conversations that we have through the podcast series, it's that people start to sit back and think a little bit differently about the conversations, about how they can be open-minded and think about the conversations, and even make it easier for people to have those conversations. So that would be an a great outcome if we could get there.

Gillian Mason: I want to come forward with a bit of hope too. And things really are changing. So I'm a board member of the Australasian Institute of Digital Health. And as an example, they were aware of my own disability needs, I've spoken at conferences about them. So in terms of me coming in, they were expecting that I will have access needs, so I was asked about it. But at the first strategy day that I went to, it was a much larger group, right off the bat the chair asked people whether or not there were extra things we would need to think about on that day.

I'm aware of some things, but who else has extra access needs? You are welcome to bring them up with me. We want to make sure everyone's productive during this day. These and this is what we will be doing. The information was there in advance so you had an opportunity to say what your needs were. And another board member spoke up and said, "yes I have this sensory processing situation," I can't remember exactly what it was. And the reason I can't was because there wasn't the onus on that person telling us all of their medical history. There was just so this is what my need is, will that work? And it's just a normal conversation.

Brad Webb: Everyone just got on with it.

Gillian Mason: And then the next person says, "well I need to leave at 2:30 "'cause I need to pick up the kids." So it's just a normal part of how we work together. What are your needs? So yeah I'm putting that forward because it's hopeful, that's hopeful to me that there are situations like this, whereas that wasn't the case 15 years ago.

Brad Webb: Exactly yeah. You've opened a lovely segue for me 'cause I wanted to swing back to the award that you received. It was talking about digital access, digital inclusion, digital health. It has been, I think COVID has taught us and opened up some incredible doors around telehealth and digital access. But it's not as simple as just having a consultation over a Zoom call and the like. But it's an important new conversation that we can have at for others we're having it but now it's been mainstreamed almost.

Can you tell us a bit about your work in digital health?

Gillian Mason: Yeah, so I started getting involved in that space as a hobby really on the side of what I was doing. In terms of the advocacy space around digital health and inclusion. I was already clinically using telehealth for some things like you said, and didn't realise that my lived experience that I had of disability and of just having used the health system a lot, it's quite eye-opening when you kind of chart it all and have a look at the amount of hours and the amount of different types of contacts you've had with the health service. I started realising that that was a real asset, that expertise that I had.

So I could use that and leverage that lived experience to start working more in trial design. And then with the institute at doing advocacy work and talking to companies and talking to startups and talking to others about expecting people to be disabled and not thinking, okay, we want to be inclusive. So once we've designed a new electronic medical record system for example, we'll see whether or not we can kind of retrofit it for people or we'll design a new clinical decision making tool. So some piece of software that helps a doctor or a clinician to predict what will happen for a person. But we'll exclude anyone with disabilities when we do the original study, and have heaps of data about kind of everyone else, and then maybe see if it will work. It's not gonna work later.

Brad Webb: No, and it's all just extraordinary to be having this conversation given that one in five Australians have a disability. So that's a statistically significant proportion of the population to not even be considering them in the up.

Gillian Mason: Yeah that's right. And no doubt there are people with disabilities in those data sets, but they haven't told anyone. And data collection processes or appointments, there's so many different things that aren't broadly accessible to people, and we haven't even really thought about what accessibility means.

So now, and thank goodness, we usually are thinking about physical access. So it's unusual that a hospital or a medical research centre site won't have ramps. They might not have toilets that are very accessible, but there hasn't been an invitation for people to talk about the other stuff. And so we don't collect data that describes disability in the medical record to even have a look at what's different and what needs to happen.

So my work in that space is it's varied. I mean I do some speaking, I get involved as a consumer representative when there's think tanks about new services and kind of will help to give advice on how to find people with different kinds of lived experience to include on teams so that you'll have the right expertise. And oh I've lost my train of thought here for a second. The other thing. Where were we?

Brad Webb: We were talking about digital participation, the work you do in the digital space, creating those opportunities for people to access digital health. I'll give you--

Gillian Mason: Let's go back.

Brad Webb: We'll go back, we'll go. 'Cause another aspect of digital is the opportunity for people to meet other people, to engage with other people. And you talked about earlier when having that conversation with an employer about access and inclusion can start with connecting in with other people who've had that conversation. And I have to say for me for all its perils, social media, especially places like Twitter, have been an incredible source of education, of learning. And you see, the rich communities that arise through those digital social networks. How important do they become in that equation?

Gillian Mason: Oh look, they're hugely important because and I've just remembered the last piece I was gonna put on around the work that I'm doing there. It's about finding people who aren't just someone who has the same disability as you have or the same health condition. It's about finding someone who has an experience or who's working in the kind of work that you wanna be doing or has these other skills who also is dealing with disability.

You know, barriers to employment, someone with enough common experience that they actually can help you or that you can develop a mentoring relationship with. So it just opens up your network. Like the other piece I was gonna say is that I'm involved in using my technical skills in digital health and my clinical skills. And being able to do that work, that normal work, but have a disability access lens and an inclusion lens and be doing almost what is really activist work but through very ordinary daily work things.

That's kind of the other part of it. So social media allows you to have access to enough people, you can find someone like that. 'Cause if you didn't have that and in the days I didn't have anyone else to talk to when I was first diagnosed with the reason for things I was experiencing. I was just told it would be bad and told not to aim very high, that I would always need help with stuff. And now I like getting help with stuff, but I get to decide what that looks like. And it wasn't until I met two people in real life who had immunoglobulin infusions next to me in hospital. We sat next to each other every three weeks for seven years, got to know each other really well, that was my community. And kind of over that time then I found other communities on social media.

But I very nearly didn't have access to any of that. And unless I'd had my thinking change, and talking to those two women who are parents, who were they're people who are great problem solvers, and talking to them about their different ways they did things in work, that just really helped me to stop thinking about this in a diminutive way. And I sought those networks out. 'Cause I don't think, I didn't like being in disability spaces on the internet for a long time 'cause I didn't wanna be disabled.

Brad Webb: Can I ask about that journey from hiding your disability or not, for to yourself and to others, to embracing it and understanding it and being proud of it? You used the word pride earlier if I'm not mistaken.

Gillian Mason: Yeah look I don't think having a disability is something to aspire to. And I put that in because there is this kind of disquiet and this conversation I'm seeing more and more on social media from some people in the medical system who are thinking, well now this is something cool to have. It's a way to find community right? And more people are getting diagnosed with these things. Is it just cause it's trendy? I'm like, it's rubbish. But there is pride to be found in your otherness, and realising that it's not something to be ashamed of.

It's just getting rid of that shame and feeling like it's not a bad thing to say that today I'm in a lot of pain, so I'm going to change my, I'm fidgeting here and moving all around. That's a pain management thing. I also kind of, it just allows my brain to focus. I can move around, whereas before I would never have spoken about that publicly.

I might've talked to my two friends and confidants who are going through the same thing. But now on social media and in in the rest of life, I feel much more confident just to plainly say, this is what's going on for me today, this is what I need. And I can just be much more of my authentic self. Yeah I'm not performing something that's different to what's really going on for me. And I feel that's a little bit of a responsibility. I've taken that on as a little, it shouldn't be everyone's responsibility, but I'm in a position of relative like power's the wrong word, but a position of seniority I guess now where I'm less worried about it having a negative impact on my career. So it's my responsibility to show other people that it's completely normal to talk about these things.

Brad Webb: And the opportunity you have to influence that conversation is tremendous. To being able to both from a job function and role, you're empowered to do that. But also as an individual, feeling that that's something you can and should and want to do I think is yeah a tremendous place to be.

Gillian Mason: And suffering. 'Cause there's absolutely suffering that goes along with these sorts of conditions often. And suffering coexist with joy, and an experience being in a different way. Like I've got some really funky sensory things that go on with my legs. But sometimes when it's really hot and I've been in the ocean and I ride my bike home through the wind, it's just this lovely weird feeling going on of like tingling things on my legs, which I know is a paresthesia, it's a disability thing. It's really nice. There's lots of other things that I wouldn't have ever said that 'cause it would sound weird. But that's just the joy of living in my body.

Brad Webb: We're nearing the end. I'm just do you have any advice for the medical profession, for service providers in a general sense, almost like is there a magic bullet or is there something you would ask of them to think about when it comes to being a more inclusive and safe space for people with disability?

Gillian Mason: Yep. The most important thing is to ask the person why they are there to see you and what they would like to talk about up front all of the time, rather than making assumptions. And I guess just expect people to have access needs. That needs to be an expectation. If people don't, okay, carry on. But if we're not asking people what their needs are, then we're never going to know that they need to be met. And I wanna say at the same time, I understand what it's like to be a clinician now today, and the time pressures and the pressures that are often on you, the way that things work to get things done without much help, I know it's really hard.

It's not up to the individual clinician actually to be responsible for everything. It's up to all of us to change the way that the systems work. But just expect disability to be a part of the normal human existence. And that people aren't always coming to you to be fixed, they're coming to you with a specific issue.

Brad Webb: That's sage advice, not just for clinicians the health system. I think anybody in that scenario to assume that there's an inclusion or an access need, and to start with the question of why are you here and what can I do to help you? I wanna round out, this is the Embrace Your Otherness podcast series. And I did give you a heads up. What does embrace your otherness mean to you Gillian?

Gillian Mason: It means disability pride, like we talked about before. It means knowing that I don't love all the things that go on for me because of my disability, but it doesn't make me less than anyone else. Some of the things I've learned through operating as a disabled person working in healthcare has made me a better clinician and has given me expertise that I can use and they're really valuable skills that are an asset to the people I'm working with and the systems. But it's not everyone's responsibility to use their otherness for some greater benefit. It's completely okay just to be proud of who you are and carry on with your life however you want to be living it.

Brad Webb: On that note, I have really enjoyed this conversation, it's been illuminating on a range of fronts personally and professionally. I just wanna say thank you for taking the time to spend with us in conversation, for sharing your story so openly and honestly, but also for the work you do, which is changing perceptions, changing the way in which we can improve health outcomes and social outcomes for people with disability. Thanks so much Gillian.

Gillian Mason: Thanks so much for having me.