Disability Matters Symposium 2026

Jackie Leach Scully:
0:04
I'd like to begin, though, and I should say that I'm Jackie Leach Scully and I'm the director of the DIIU.

I'd like to begin with the Acknowledgement of Country, which should be on the next slide.

So we would like to acknowledge that we, most of us, are hosting the symposium from the lands of the Bedigal people on the Kensington campus of UNSW, although some of us are on other lands at the moment.

We also would like to acknowledge the traditional custodians of the various lands on which we're all meeting today and pay our respects to Elders past and present, celebrating the diversity of Aboriginal people and their ongoing cultures and connections to the lands and waters of NSW.

0:58
Now, the format of today's symposium is going to be that I will give a brief introduction.
This is also on the next slide.

We will then have our two speakers, Ricky Kremer and Ebe Gannon, who will each speak for about 15 minutes.

Then we'll have a quick comfort break of 5 minutes and then we'll come back for a Q&A and a session for around 10 to 15 minutes.
And you, you're welcome to send in your questions in the Q&A function as usual.

1:34
A little bit of housekeeping that's on the next slide too.
So having your camera on is completely optional if you want to do, if you don't want to, don't.
If you want to access the live captioning, you can do this by clicking the show captions option in the Zoom meeting toolbar.

This symposium is going to be recorded and it'll be made available on the Disability Matters website.

And all the papers and a copy of this PowerPoint will also be made available on the website.

So if you have any questions that should go into the Q&A box, as I said.

And if for any reason you feel you need to leave the session, of course, feel free to do so and come back whenever you want to.

2:22
So just a couple of words about the DIU and the Disability Matters project, that's on the next slide.
The UNSW’s Disability Innovation Institute is an initiative that we've been here since about 2017.
We focus on disability research and education and also knowledge exchange.

And all our team members take pride in undertaking work that's radically inclusive and across its disciplinary boundaries.
So we come from all disciplines.

Our institute's approach is to see disability not as a problem has to be solved, but as just an integral part of the human condition that we need to encounter and engage with, rather than fear.

3:14
I wanted to say a quick word about the Disability Matters project, because this is just one of the projects that the DIIU is involved with, but it's actually quite a major one at the moment.

Disability Matters is a project that's funded from the United Kingdom, but it has international partners in Australia, Canada, Singapore and India, as well as the UK.

It's funded for six years by the Welcome Trust from the UK and it aims to focus by placing disability at the heart of health and science research rather than at the periphery as it usually is.

And each of those international partners takes on the responsibility of presenting a symposium at least once a year.

4:03
And this is our symposium for this year within the framework of the project and the topic of it, which is emotional labour came about because of a comment in last year's symposium by one of the speakers there, Ellen Fraser-Barber, who said that the demands of emotional labour are significant for lived experience researchers.

Emotional labour is the kind of emotional work that people have to do, not the obvious physical work that's visible to everybody, but just it's managing your emotions, but also managing other people's emotions as well.

And Ellen said that lived experience and disability researchers constantly navigate microaggressions, inaccessible environments, and the pressure to conform to ableist norms.

That kind of work is not just emotionally taxing, it can lead to burnout because we find we're unable to disengage from the issues that we're studying and advocating for.

And burnout in this context goes beyond fatigue.

It's that overwhelming sense of hopelessness that comes from constantly battling microaggressions and ableist structures.

And I know that many, many people on the webinar today have experienced those.

The personal is political for lived experience disability researchers.

And that means that we can't simply step away from the issues that we face.

And so in light of that, we thought it would be good to focus on that issue of emotional labour for advocates, researchers and others in the field of disability in this year's Disability Matters Symposium.

Both our speakers are going to be talking about that.

And I'm going to turn to our first speaker, Ricky Kremer, and ask him to introduce himself and to share his slides.

 

Ricky Kremer:
6:13
Hey everyone, we'll just share my slides.

Hi, my name is Ricky Kremer and I'm the Lived Inclusion lead at the National Centre of Excellence in Intellectual Disability Health.

 

Jackie Leach Scully:
Hello, Ricky, this is Jackie here.
I'm afraid that we can see your whole screen again.
Do you think we could go to the just the big slide?

Ricky Kremer:
7:30
Is that better?

7:42
My name is Ricky Kremer and I'm the Lived Experience Inclusion lead at the National Centre of Excellence in Intellectual Disability Health.

So we say the centre for short.

Today I will be speaking about emotional labour for people with disability from my own experience of being in the leadership team at the centre.

So emotional labour is about the responsibility people with disability take on when making decisions.

Before I start, I would like to do an Acknowledgement of Country.

We know we are on First Nations land.

We respect the First Nations people from this land.

On this land we live, work, play, swim and dream.

First Nations people have lived on this land for many years now.

We live on this land together.

We respect all First Nations people and Elders and we can learn a lot from all these stories.

9:07
So leadership decision making.

It is hard starting a new job, but being the first person with an intellectual disability at the centre of the leadership level definitely felt like stepping into the unknown, not fully knowing what the job and people were going to be like.

And I felt some pressure and that I was carrying the responsibility of being the only person with an intellectual disability when making leadership decisions.

And at times it was hard to think about what the best decision was for everyone.

9:54
In the beginning, some leadership meetings I attended were not accessible.

For example, they would go for two hours with no breaks and had people speaking too fast and in jargon.

However, after giving ongoing feedback which they took on well, I continue to see improvements and they are now a lot more accessible.

10:32
Sometimes people with lived experience have looked at my role and there's a sense of wanting to do what I do without knowing the responsibility and the pressure I have to take on in a leadership role.

I often like to use the phrase stay in your lane to mean be only concerned about what you need to be concerned around decision making.

Some colleagues were not fully aware of my ways of working, people being disorganised and not preparing ahead of time.

11:20
So some practical tips to support people with a disability. Giving people with disability some time to prepare for meetings and to understand information.

Being well prepared to open to adjustments and knowing about my support needs allows me to do my best work.

Hiring the right people who can take on the responsibility and pressure of the job and understanding the content and information being talked about.

Making sure it's in simple language before asking people with disability to read or do something.

Asking for what the person needs to do in the subject of the email and clearly in the body of the email to make it easier.

For example, do I need to read something in advance or make a decision?

And having enough breaks during meetings and checking in to see how I'm going.

12:45
The recruitment side of things.

So the recruitment of new staff and lived experienced staff has been a big area of emotional labour for me, for my leadership position.

Often the recruitment process is not accessible for people with disability.

There's a lot of extra information and detail that was given to me, which can create stress and overwhelm.

It can be hard at times when thinking about keeping people's information private and what information I can and can't be shared.

And at times, I felt like I'm not being seen as a leader or as an equal during the recruitment process, so constructive feedback wasn't respected or that the feedback I shared wasn't acknowledged.

Decisions felt like they were being made without me being in the room.

14:00
Some practical tips to support people with disability.

Always be flexible.

Find out what tasks people with disability enjoy doing so work is meaningful and people know what to expect.

Include people with disability in whatever parts of recruitment they want to be included in.

They may want to be part of the whole process or may only want to be part of final interviews and that is OK.

Ask how they will contribute and feel valued so they will know their purpose and openly take on feedback on how to make things more accessible as people with disability are the experts.

 

Advocacy for team and lived experience.

15:07
Advocacy can be hard sometimes, having to listen to stories where people have not been treated well or feel valued and not being able to share that freely with everyone because of privacy information can be hard.

15:37
Sorry, I'm just lost my spot.

 

Jackie Leach Scully:
I think you may have jumped to slide.

I think you need to go back two slides.

That's it.

 

Ricky Kremer:
16:27
Here we go.

16:39
Having to listen to stories where people have not been treated well, feel valued and not being able to share that freely with everyone because of privacy information can be hard to juggle at times, but I do sometimes worry about lived experience, safety and well being and whether they are doing OK in the workplace.

It can be hard being in a leadership role and knowing when to say something, to check in with colleagues or lived experienced staff and when to not.

I run a monthly peer network group and hearing from the real concerns from people can be hard sometimes.

17:37
Some practical tips to support people with disability.

Managers giving teams and lived experience staff updates about what's happening so people with disability have time to process.

Having a strong manager, team and support where you feel safe to share when you're feeling overwhelmed or down and how you might be worried about people.

Having a team you can check in and see how you are going and making sure the pressure isn't getting too much, especially in high stress times.

The research space in general can be a tricky place for people with disability to be in and understand.

There are a lot of long and tricky words being talked about and it's important to make research more accessible for people with disability.

Sometimes it can be hard to keep meetings engaging and people with disability can feel left out.

Some meetings don't ever set purpose and it can be hard to get people with disability involved as not enough time and planning is put into it to make it meaningful for people with disability.

19:16
Some practical tips to support people with disability.

It's important to make meetings more accessible for lived experience staff by using simple language and explaining any jargon.

Ask people with disability what role they want to play and think about how you want to create or make that role more meaningful.

Know the people with disability don't have to be involved in every part of research.
For example, they may want to only give advice to researchers on a project, and that is OK.

Give regular updates and check-ins to people with disability.

To keep improving and learning from what works and doesn't work.

20:15
Mentoring, so showing what good leadership looks like.

Leading by example and showing best practice.

And it's hard sometimes, hard conversation to have with people with disability sometimes but make sure people feel supported but still do the work that's needed.

Often I'll be managing multiple projects as I'm in a leadership role, but sometimes it can be hard for other lived experienced staff to understand the complexities of the role.

20:58
Running my peer network group.

I enjoy checking in with how lived experience workers are going, sharing wins and talking about hard things we can learn and grow from.

Some practical tips.

21:19
Often it to support people with disability in regards to this.

So often at times mentoring can be trial and error, learning how different people work and it's important to feel supported by your manager and team.

By having regular check-ins. I have a great one-on-one brainstorm meetings and discussions with my manager which helped me to break down what's been going on so I can understand the big picture of work better.

Having my own mentor to learn from and show me what being a good mentor looks like and knowing that because I'm a leader I still need support with things and that is OK.

22:29
So I feature on the centre's podcast series as a host and discuss many health topics with different guests.

If you'd like to tune in, scan the QR code.

Here's the Spotify link to listen along.

If you are interested in following our work, you can scan the QR code.

Sign up to our newsletter and you can also visit the website link on the side.

Thanks for having me.

23:06
My contact details are on the slide if you'd like to get in touch and enjoy the rest of the symposium.

Thank you.

 

Jackie Leach Scully:
23:19
Thank you, Ricky, for your presentation there.

And I think there's some really interesting and important points there that actually many of them are applicable not just to people with any kind of disability, but to everyone in being part of a research team or working team.

And we have getting some comments in from the chat about how much people have appreciated Ricky's presentation.

23:48
Then I will move to our next speaker who is Ebe Gannon, who will also introduce herself.

And Ebe will be sharing her slides and talking for about 10-15 minutes before we have a brief comfort break.

 

Ebe Gannon:
24:05
Ebe speaking.

Thanks, Jackie.

Can you give me a thumbs up if you can see my screen?

OK, thank you.

24:13
Firstly, I'd like to acknowledge the traditional custodians of the land from which I am joining, which is the Ngunnawal and Ngambri people, and pay my respects to Elders past and present.

And also thank Ricky for a really thoughtful presentation and lots of really practical tips of reducing the quantum of emotional labour that disabled people need to perform, particularly in a research context.

24:40
My name's Ebe Gannon, I'm a PhD student at UNSW Canberra, and I'm working on a project related to disability employment policy.

I'm also the chair of the Board of Children and Young People with Disability Australia, and I have a background in equity and inclusion work across higher education and the public sector, as well as in disability advocacy.

I'm just starting my journey in disability research and reflecting on some of Jackie's comments from before, I think we really could just have a whole webinar about the meaning of acceptable emotions and whose emotions it is that we are policing for acceptability, whether it's ours or whether it's those we're working with or both at the same time in a lot of the relational kind of work we do in research.

But perhaps we can talk a little bit more about that in Question Time.

And I'm going to use a little bit of a reflective practise framework for talking about my own experiences of emotional labour as a neurodivergent student with disability.

25:53
And in my own experiences, there are some kind of intersecting nuances I suppose for me in the way that I experience emotional labour, firstly as a neurodivergent person.

So compared to other people with disability, emotional labour for me is not just about managing the cognitive and emotional aspects of interacting with non-disabled people.
It's also about often needing to do this across the boundary of neurotypes regardless of disability or identity.

My communication and my behaviour, the way that I express emotion and the way that I think often differs from those who don't share my neurotype as an autistic person and person with ADHD.

And when I think about emotional labour and how we navigate those sort of emotional interactions with each other, it's a concept very related to masking that we talk about a lot in the context of neurodiversity, which is where we are often performing neuro-normativity, the standards that we support and reinforce in our communications with each other about what we should, how we should behave and how we should communicate.

And masking for neurodivergent people really does make up a very big component of what we do as emotional labour.

And in a moment, I'll come and put a little bit of detail to that in the context of academia or in research.

27:26
Also as a young person, the power holders in a lot of the work and study related interactions that I have are generally not from my generation.

They're people with really different life experiences.

To me, there is assumptions embedded in what is acceptable, which I see is generationally sourced.

So what kind of communication channels are professional, what sort of words and what kind of communication is professional and acceptable to use in the workplace?

And navigating those things, yeah, really adds to that overall emotional labour and kind of cognitive regulation that we constantly have to do as younger people and early career researchers in this space.

And as the younger person walking into these established norms, I have to partake in some of those expectations, whether it's the norm of a phone call out of the blue or a quick text message or a Team's message that asks me if I have a sec to chat.
It's not something I always have the power to reject, which has implications for accessibility for me and for me from my generational position, I see these as kind of culturally rude, but this is not always the position that others from different generations take.

And particularly outside of disability spaces when I reject those kinds of norms, that does present a risk to my reputation and future opportunities in work.

28:57
Lastly, as a PhD student, many people in this room, in the virtual room, I suppose have been through the journey of developing as a scholar through the PhD journey, and I don't need to explain that in detail to you.

But here I and a lot of other disabled PhD students take on additional emotional labour to manage the responses of academic institutions and their representatives.

We can choose to make university staff around us comfortable by saying it's fine when our access and support needs aren't accommodated.

Or we can make a fuss.

And because of my professional background, I'm usually the one to make a fuss because I know what's possible and what we're entitled to and have a lot of privilege in knowing how many of these systems work.

29:46
I want to give you a couple of examples that have happened to me recently over recent weeks and months to put a little bit of detail behind this.

And the first is around what the emotional labour implications are when we advocate the change and need to reject requests for free labour.

And for the purpose of this discussion, I just want to make the distinction between the sort of general additional labour we all do in academia versus that that's actually someone else's paid job.

There are things that we do in academia that I won't go into or pass judgement on today where there are expectations about those extra things that support our development.

But one that happened to me a few weeks ago here at UNSW, I won't go into the details.
This is not intended to be an attack on anyone individual, but I think it's illuminating of the regular self-scrutiny and the emotional labour inherent in being a student with disability.

30:45
I study at the UNSW Canberra campus. We’re a funny little place located on a defence base, and structurally we're a faculty of the university in the same way that law and justice or medicine are.

And as such it means that anything that's on offer to students at UNSW Sydney in those faculties should be available to my community in Canberra.

But this is decidedly not the case.

And in this particular instance I'd identified a student support programme that I think would have really significant impact on our campus.

I didn't go into bat in advocating to get this over to UNSW Canberra.
That always involves a lot more self-monitoring and an emotional labour in a space that's full of paid staff and that power differential is quite meaningful.

But I did point out to this group of staff that in future it would be excellent to see programmes like that taking our campus into account from the design and resourcing phase to make sure that our students receive equitable service on the same basis as Sydney students.

31:48
And after I made this point, a couple of things happened.

First, some introductions to Canberra-based staff were offered to me with the suggestion that I make time to discuss this issue and develop solutions to be implemented with those staff.

And while I do have the background in this area, in this context I'm a student and I'm not paid to do the job of the university to provide basic services.

I know that this is someone's job, because it used to be mine at a different university, But explaining this in a way that isn't going to come across as ungrateful to a paid staff member is a significant investment in terms of emotional labour.

And it requires making my own capacity and my own needs smaller.

And the development of a response requires a lot of time that I'm not paid for.

But I have to do this emotional labour because ignoring this offer of introduction signals that I'm not interested in solutions, only in raising problems.

And then that disincentivises those staff from ever engaging with disabled students again, because then we get positioned as too difficult.

32:52
The second thing that happened, I was invited into some community of practices to communicate and connect with others of similar interests. Always grateful for these connections, and I expressed this.
But presence in those spaces is again a form of emotional labour.

It's not possible to care about something.

I'm a progressive cause behind the scenes.
No, I have to be public and connected about it, performing my commitment all the time and engaging in established spaces in order to be taken seriously or respected, regardless of the immense amount of work that I do in spaces outside of the university to progress those objectives at a systemic level.

33:32
And finally, privately, I received some direct private communications explaining all the reasons why certain services cannot be offered in Canberra, or apologising profusely for their own deficiencies and promising to do better in the future.

Again, I can't ignore those.
I have to thank the staff for thinking of me and my community and encourage them to keep doing so.
Congratulate them and perform gratitude for their demonstration of interest.
Because if I don't, they won't be rewarded for this engagement and will be unlikely to do it again.
Because one ungrateful Canberra student didn't say thank you, answer their questions or provide them with the relevant networks and introductions.

Overall, I'm not a paid staff member and I'm unlikely to be the first to point out these discrepancies, and I won't be the last.
But a lot of students who really need support like this are in a more precarious position than I am, making me well positioned to push for better when I don't have a lot to lose.
But it does have a lot of costs emotionally and in terms of my working feedback.

34:40
The second example is around my experiences of emotional labour when giving feedback.

I'm often approached for feedback these days, usually in a professional capacity and often also as a disabled person, a student or some other box that I tick, I suppose for an organisation.

But feedback requests aren't straightforward and there are a lot of dimensions of this kind of work that I need to consider, which all constitute emotional labour.

First, as an autistic person, my communication can come across as blunt and some have even called it rude.

Those who know me well know that I'm a really open person and that one of my most important values is being solutions focused.

I'm also a Black Hat thinker and that means my strengths are usually in seeing gaps in things and being able to communicate how they could be filled or addressed.

And I always try communicate to ensure that my practical meaning is very clear for the purpose of improvement.

Ultimately a lifetime of being misunderstood forces me to self-monitor to ensure that nobody, especially non disabled people, intentionally or unintentionally represent my meaning.

So on top of the quality and constructive feedback, I always try to provide a layer of self-criticism, tentativeness, questioning and anxiety is always present.

And spending that time altering my punctuation, adding caveats and taking time away from the actual task at hand or any other task on my list for that day is a massive chunk of my week.

36:16
If I stopped performing that labour, I would quickly be branded as negative, as rude or blunt or arrogant.

And I really hope that all of those things are the opposite of what I am and how other people see my work in reality.

It also results in an additional challenge in the excessively long emails and communications my collaborators will often receive from me.

I don't apologise for that.

If you're interested in hearing it, I encourage you to ask me about the final example in Q and A, I have around how I navigate emotional labour in the context of disability, community criticism, and the kinds of emotional labour we perform within our community.

Because I don't think that emotional labour for disabled people is just something that we perform from within and then outside our community with non-disabled people.

I think there are other kinds of emotional labour that we perform internally within our ranks that are really important to talk about.

Because just like lots of other social justice movements, solidarity is really important.

And where we can help our fellow disabled peers and colleagues reduce the amount of labour we need to perform, I think that's something we need to prioritise.

But at the end of the day, reflecting on what we've heard today, I still keep coming back to these questions of if this emotional labour is labour, should we compensate it somehow?

How might we do that?

There are certainly lessons from other cohorts.

I recall reading a few years ago about universities providing lived experience and community representative payments to First Nations staff.
For example, the cultural load that they take on in performing their roles as Aboriginal and Torres Strait Islander academics.

Can this labour be reduced?

How I can do that?

Is it our role as disabled people to reject the labour, or is it other's job to stop requesting that it be performed?

And what are the costs and benefits of this labour for academia and research?

Very rarely do we perform labour when it isn't benefiting someone and it's certainly not benefiting us.

But also what are the costs of, I suppose, draining the kind of energy and our capacity as disabled people?

And what is the potential if we unlocked that energy and stopped needing to perform that labour to the kind of research and the kind of contributions we'd be making to academia.

But I'll pass back to Jackie to take us through into the break.

 

Jackie Leach Scully:
38:59
Thanks Ebe for that presentation and very open discussion of your experiences that I think have looking at the comments has been very valuable and very interesting to the audience.

So as you say, what we'd like to offer now is a 5 minute comfort break.

And Ricky was right to underline the importance of breaks in what can be interminable meetings.

I hope nobody's finding this one interminable, but I think the principle should still hold.

So we will see you.

I make it 11:40.

So we will all be back at 11:45 for a Q&A session.

40:13
OK, I think we should all be back now and we can move on to the Q&A session.

Now we have already had some questions in the chat.

There are actually also a lot of comments, particularly after Ebe's talk saying how much is people related to what she was talking about and to her experience.

There are many of those that of course I'm not going to read them out, but thank you Ebe for that.

I'd like to start with a question that came for Ricky actually, and this was from James Cox, who says that he's newly appointed in the driving change team at the Centre for Intellectual Disability.

41:01
And the question is how often do you or other people with disability get to set the agenda and the format for a meeting?
And is this something that you'd like to be able to do more?

 

Ricky Kremer:
Well, that that's a good question.

 

41:18
So we get to put in some things for the agenda, not everything, but slowly we seem to be having more staff with disability being able to chair, chair meetings as well as talking about different topics.

So it's slowly, we are getting that happening.

So yeah, not everything but part of it, which has been really great.

 

Jackie Leach Scully:
42:04
OK, thank you.

I just want to jump ahead because there was another question is just popped into the chat which I think is a follow on from what you've said, which is from Jane Lloyd who says it is it possible in these meetings that we've been talking about Ricky, is it possible to use plain language and is it possible to ask the chair to summarise points after the discussion?

Is that one of the things you can do?

 

Ricky Kremer:
42:31
Yes, generally if they are not using simple language or plain language, they generally we have to give them a bit of a reminder to use that.

And sometimes if that's not possible during the meeting, send a big email basically telling them, you know, it's not good enough to be to do it.

But we also at the end of meetings, ask if it's been done in a accessible way.

And yeah, and talk about it.

 

Jackie Leach Scully:
43:19
OK, thank you.

I think that's actually a really interesting point to set up a sort of culture for any meeting anywhere, you know, set up a culture in which it's part of standard practise to give feedback about how the meeting went for everybody.

OK, now I'd like to go to a question for Ebe.

43:38
This is from Jodie who is asking as a fellow neurodivergent, to ask if you have any thoughts on not being taken seriously or your challenges being dismissed, especially pre-diagnosis.

Is that, is this also a form of emotional labour?

And Jodie says it almost makes me wonder, is simply existing in a neurotypical world?
It certainly feels like a lot of work sometimes.
And the communication example was very relatable.

So any comments to that?

 

Ebe Gannon:
44:17
Yeah, thanks for the question.

And existing in a neurotypical world is certainly a lot of work in of itself.

Not being taken seriously is such a big challenge and yes, a big source of emotional labour for a range of reasons.

On one hand, you know, I can sit in a panel discussion like this and come across with good verbal communication skills.

I have strong written communication skills and come across as a confident and assertive person.

And then also, in addition to that, ask for accommodations and adjustments to the way that people work with me.

And that really confuses people because on one hand you come across as very capable and confident and effective, but those things can be true at the same time. I can require support and adjustments to the way that I am working and that others are working so that I can be effective.

And also, I can be disabled and effective and require support and be neurodivergent all at the same time.

And for people who don't work with disabled people and neurodivergent people regularly, that can be very confusing because the assumption is that you should be able to see me struggling if I need support.

I think that's such a massive shame because if we as disabled people need to struggle before we're allowed any kind of support or adjustment from other people, we've already wasted so much energy and so much time.

And if we can just trust ourselves and trust others that the support we ask for is the support that we need, we'd be in a much better place and we'd be massively reducing the kind of emotional labour that disabled people need to be performing.
That likely is the source of a lot of gaps in our experiences and our outputs.

We have to devote all of this extra energy and time to performing the struggle and to asking for that help and compensating for the support that's not provided.

That takes away from that extra publication or that extra panel conversation we can participate in or that extra bonus thing that the non-disabled person sitting next to us gets to do.

 

Jackie Leach Scully:
46:48
Yeah, thank you.

I'm going to exploit my position as chair and just throw a comment in there that most of this symposium today has been about intellectual disability and neurodivergence.

But of course people with other kinds of disability also have to engage in the same kind of emotional labour.

Enormous.

The kind of thing that you're talking about is almost performance of a stereotype of disability in order to get the support you need.

And one example that I've actually written and published about for myself was about if I'm flying somewhere and I need to make the cabin crew aware that I'm deaf and I can't hear any of the announcements, like if we're going to crash, you know, I'd quite like to know beforehand.
I have to act deafer than I am.
Otherwise they don't quite believe that I am.

And that's always struck me as really kind of paradoxical, but also humiliating in some ways.

OK, I'll stop being exploitative and give somebody else a chance to ask a question because there are several comments here as well.

47:58
But there is a question about how do you identify emotional labour both in yourself and others.

This is from Marika Dorman.
Really, how do you know that you're doing it?
And, how can I notice when others are doing it so that I can support them to reduce that?

I think that's a question to either of you.

Ricky, would you like to comment on that?

Ricky Kremer:
48:28
Sure.

I think it's, I think it comes basically when you know lots, lots of things to think about, lots of things to, you know, if it comes to making a decision about something.

And I guess it's when it becomes something that's quite, wouldn't say personal, but I think it's when you're thinking about, you know, really tough decisions, Yeah, that you have to make.
I think that's the main, main part.

 

Ebe Ganon:
49:09
Yeah.
A great, great call, Ricky.

I think also I'm not good at identifying when I'm doing it or when I have to do it.

But I think it's much easier to observe when other people are doing it.

And the way that I observe and identify emotional labour for others is if it's something that they're doing that somebody else wouldn't need to do if not in their position or something that is not actually an inherent part of their job.

It's bonus work that happens because of identity or happens because of access needs.

That's when I often notice it.

I do try not to ask people how they're doing as an open question in response to those things because that in itself is more emotional labour to get someone to reflect on that thing, but providing concrete suggestions, the things I can do to take that away.
So if it's hey, I'm happy to send the email that confirms that interpreters are going to be at that at that meeting, does that help?
Or I'm happy to change the agenda so that we've got these things in place so that you don't need to. And being really concrete about it rather than leaving it as an open kind of emotional conversation because that just adds to the load sometimes.

 

Jackie Leach Scully:
50:36
It's a really good point.
Thanks, Ebe.

I think we have just about time for one more.

And this one is to Ebe, it's from Rohan, sorry, Rohan Valion, who says when considering the concerns of free labour, how taxing do you find this in the context of your executive function, for example, your working memory, cognitive flexibility, participation, engagement?
Do you feel this increases masking efforts to manage situations of double empathy?

 

Ebe Ganon:
51:09
To answer the second part of the question, absolutely, if I'm not being really self-aware about the extent I'm using masking or using emotional labour to make other people feel comfortable.

And in the context of double empathy, I would say most of the time when I'm working with other neurodivergent people, the load is less, we work in a more similar way versus when I'm working with people who have a different neurotype to me, where our ways of working are much more different.

But Ricky, the sorts of accommodations that Ricky spoke about are really similar to the ones that I asked for and the ones that I work with.

So when I'm working with people who have a closer experience to me, it can be less labour to support that.

But certainly the executive functioning is huge because I have the skills, the knowledge to do what I do.
But if the working memory in particular for me and the cognitive flexibility, the resources I have to do those things are less, I come across less capable, I receive fewer opportunities and people develop a very particular understanding of who I am.

And it means that when people do request free labour or when people do request something that is perhaps somebody else's paid job and not mine, for me, it does mean that I suppose I'm closer to the end of my tether and maybe the responses that come out are not always the ones that are my best work in those situations, especially when they are in person and not behind a screen.

 

Jackie Leach Scully:
53:02
I think that's a great point to end on Ebe because it shows how much that the kind of emotional labour that people with disability are doing is also common to many other people in marginalised or repressed situations.

I mean, many of us in different situations will be aware of that sense of having done this so often.
You're just too close to the end of your tether to be, as you say, make it your best work.

53:28
OK.
I'm afraid it's time to wrap up now.

We do have a final slide which may appear, which gives you our contact details of the Disability Innovation Institute.
That's our website and our email should anybody want to get in touch with us.

We're always willing and happy to hear from anybody who's interested in working with us or who just would like to know more about the kind of work that we do.

And we'd like to emphasise that the Disability Matters Project will be continuing for another several years.

So you look out for other symposia, whether they're run by us or whether they're held by other partners within the Disability Matters Project.
There will be other symposia on issues of disability matters.

54:18
So thank you to our speakers, Ricky and Ebe, thank you to everybody who's been here for your thoughts and your questions and your comments.

And we look forward to having more contact with you in the future.