Speaking of science: International Day of Persons with Disabilities

Since its inception in 1945, the UN has defined and reiterated its commitment to creating inclusive, accessible and sustainable communities and societies. Over time, this commitment has focused on promoting the wellbeing and welfare of people with disabilities and in 1992 an international day of celebration for people living with disabilities to be annually held on December 3 was called.

This December, NHMRC was delighted to take part in the movement towards creating a more sustainable world that looks to a future that calls for persons with disabilities to actively shape the conditions of their lives through their active participation, representation and inclusion.

For our ‘Speaking of Science’ webinar, centred around International Day of Persons with Disabilities, we were joined Professor Jackie Leach Scully, Adam Johnstone and Yvonne Parnell to discuss how all of us can make an impact in promoting community awareness, understanding and acceptance of people with disability and celebrate their achievements.

They also shared their insights from a health and medical perspective on how the sector can better incorporate the voices and needs of people with disabilities in their research practices. Listen to the powerful and thought-provoking discussion below.

Recorded on Wednesday 4 December 2024 from 2:00PM – 3:00PM AEDT.

Video transcript

0:00 Dr Julie Glover
Ask questions towards the end, you can enter questions into the Zoom chat function which the team will monitor and a reminder that past recordings of all of our webinars are available on NHMRC’s website.
As you just have heard as well, this meeting is also being recorded and it will be uploaded in the coming days.
Just a reminder, if you could put yourselves on mute if you're not speaking, that would be fabulous.
Welcome to a very special edition of Speaking of science, our last for this year in recognition of the United Nations International Day of Persons with Disabilities.
Since its inception in 1945, the UN has defined and reiterated its commitment to creating inclusive, accessible and sustainable communities and societies, and in 1992, the UN called for an international day of celebration for people living with disabilities to be annually held on December the 3rd. That was yesterday.
The International Day of Persons with Disabilities promotes community awareness, understanding and acceptance of the estimated 1.3 billion people with disability worldwide and to celebrate their achievements.
The theme for this year is amplifying the leadership of persons with disabilities for an inclusive and sustainable future. This theme recognises that people with disabilities play an integral role in creating a more inclusive and sustainable world.
The theme also emphasises the importance of participation of people with disabilities in decision making about processes that affect them personally. So now if you could please join me in welcoming our panel members today.
I have Professor Jackie Leach Scully, Adam Johnstone and Yvonne Parnell to our Speaking of Science event today. So, they're off there. I can see that they're all here and you can see them on their lovely backgrounds.
Could I ask our our panel members, to briefly introduce themselves and to give some opening remarks about their background? Jackie, we could start with you and then move to Adam and then Yvonne.

2:20 Professor Jackie Leech Scully
OK, thank you, Julie. I'm Jackie Leech Scully.
I'm Professor of Bioethics at the University of NSW, where I'm also the Director of the Disability Innovation Institute.
I've got a science background, but it's been a long time since I was in a lab doing anything scientific there. I also consider myself to be a disability advocate for over 40 years.

2:49 Dr Julie Glover
Thanks, Jackie.
Adam.

2:56 Adam Johnstone
Thank you very much.
My name is Adam Johnson. I'm a lawyer by training, but much like Jackie, it's been a while since I've actually run a case or anything like that.
I actually work for my local health service oddly enough in the mental health, drug and alcohol sphere, reviewing their policies and procedures and while I take a disability lens on it, I do find a lot of similarities in mental health and drugs and alcohol.
They are all needy communities in similar ways with comorbidities that need to be attended to. I think there's lots of similarities in many communities and again in other parts.
I also have worked with Jackie on the statewide Ethics Committee and I'm also a part of my health service board.

4:00 Dr Julie Glover
Thanks, Adam.
Yvonne.

4:05 Yvonne Parnell
Hello. It's good to be here today.
My name is Yvonne Parnell and I'm sitting on Whadjuk Nyoongar country, coming to you from WA. It's still morning here.
My involvement today is really as a consumer and community leader in health and medical research, and I've had a long-standing passion for that for many years.
I currently sit on the NHMRC Consumer and Community Advisory Group, as well as a number of other boards and communities within health and medical research. I sit on the South Metro Health Board in WA and also sit on the board of Alzheimer's Research Australia.
From a disability perspective, up until recently, I spent 15 wonderful years leading a disability organisation called Future Living in WA that was focused on long term planning and navigation and advocacy for people with developmental and intellectual disability, autism and acquired brain injury, so it's good to be here.

5:18 Dr Julie Glover
Thanks, that's fabulous. You've got an amazing array of experience that we can you can share with us today.
Let's get straight into some questions.
I was wondering if each of you might be able to share a significant moment in your life that has shaped your journey as a disability advocate and how it might have influenced your work in the health and medical research sector?
Jackie, I might start with you.

5:45 Professor Jackie Leach Scully
OK, thank you. Significant moment.
I suppose the most significant moment is having been born to a disabled mother and then having the loss of my hearing when I was 8 years old after as a consequence of meningitis.
But it's perhaps in terms of how it's shaped my, my research and my, my professional life.
I think I'd look back to the first piece of research I did when I stopped being a molecular biologist and working in a lab and started to do some interdisciplinary bioethics work with a team actually in Switzerland.
We were researching how people, both professionals researchers and also potential patients, felt about the issues involved in somatic gene therapy, which was a big issue at that time.
What became apparent in doing sort of qualitative research with interviewing clinical researchers and then interviewing people with different kinds of disability and chronic illness was that there was very, very different views on what were the pressing ethical and social issues in that technology and the application of that technology.
The clinical researchers tended to map very nicely onto the issues in the literature.
But most of the issues that were raised by the potential recipients of this technology were very different and were not at all present in the literature. That was really an epiphany for me to, to realise just how little representation there was of disability perspectives in the academic literature and in the practitioner and researcher world.
It gave me an insight into the importance of actually knowing rather than guessing at what the perspectives and views and concerns of people with disability and with chronic illness might actually be.

7:49 Dr Julie Glover
Thanks, Jackie. That's a lovely example.
Yvonne.

7:55 Yvonne Parnell
Look, I think for me it was really right at the start of my CEO role with Future Living when I was fortunate enough to meet and come to know a man called John Corbett.
He was a really an incredible man who single handedly in many ways helped to change the early face of disability in in WA. He was a respected World War 2 veteran, but really it was his lifelong commitment to people with developmental and intellectual disability that that really became his legacy.
John was the primary carer for his son Keith, who was born with down syndrome and after the war, John he worked tirelessly across the system, breaking down social barriers and community attitudes towards people with intellectual disability.
At the time, it was really his staunch advocacy that pushed the issues into the mainstream and really ignited the pathway for improved education, housing, employment and independence and of course we've come a long way since then which is great.
But it was really this remarkable man who cemented for me the importance of inclusion, advocacy and supported decision making to ensure that everyone, including people with intellectual disability, is given an equal voice in matters that affect them, even when they may find it really hard to express that voice themselves.
In WA we often talk about in disability circles, nothing about us without us and for me, that's what it's really all about, not just for the disability sector, but also for health and for medical research and really the wider community.

9:56 Dr Julie Glover
Thanks Yvonne.
Adam.

10:01 Adam Johnstone
Look, thank you. You're probably going to hear a lot of very similar stories here because again, the nothing about us without us line is something I was given by a lady by the name of Betty Johnson, and she had suffered from polio as a child, and she'd lived her whole life with that. But she was the founder of Health Consumers NSW– had a big impact on my life, was one of the big reasons I ended up doing the work I do now and not only because of my disability, but because of the many people I was able to meet because of this work.
Including, I might add, going to the convention that Bob Carr organised with Christopher Reeve that fundamentally sparked my interest in science.
Now, I'm not a scientist by any means, but I see the law as an important facilitator of researchers to ultimately help people ameliorate control and be able to, maybe in the next couple of generations, live without disability.
Because the other factor that has really left an important impression on my life is I went to a small special school, man, they were in their special school. It's no longer there, but from about 14 years onwards, so many of my classmates died from the aftereffects of muscular dystrophy. I would have gone to five funerals by the time I graduated.
The loss of life is also the story of disability, and the progression of disease is also an element of inclusion or the lack of it that I think we do need to address through science.

12:17 Dr Julie Glover
Thank you. That's a very powerful example as well.
Next question is how can our health and medical research sector better incorporate the voices and needs of people with disabilities in their research practices?
Would you have any advice for the sector, Adam?

12:40 Adam Johnstone
Look, plenty of advice, but again I'm very cautious because there's one thing, we all know about free advice. But nonetheless, what disturbs me about all levels of policy making and the NDIS is a classic example under its rules, the one thing it will never fund at this stage, rule 7.5 is anything that improves the functional capacity of the individual.
I think that is absolutely criminal because purpose should be to improve somebody's quality of life, somebody's access to life. I think an important part of that is improving their functional ability and it should include the use of scientific research and cutting-edge medicine to achieve that objective.
I just don't understand why you would put together a mammoth national disability scheme, claim that it is being perceived, yet at the critical point say this will never fund things that may improve your functionality because that is deemed as health.
I think that dividing line is morally, socially and economically indefensible.

14:11 Dr Julie Glover 
Thanks, Adam.
Jackie, do you have anything to add about the health and medical research sector advice?

14:19 Professor Jackie Leach Scully
I think like Adam, I probably have, you know, too much to say. But at the moment my focus I guess would be on much more simply, I guess, seeing people with disability as partners or at least potential partners in the research.
At the furthest end of that, at that inclusion of people with disability and research, might be methods of co-production and co-design in which the people with disability or chronic illness have been involved in the process right from the start.
I'm an advocate of that, but I would also say that particularly in scientific research, it's not always that gold standard in a sense, it's not always appropriate. There are other kinds of research in which people with disability can be included, but maybe not at quite that sort of level.
Certainly co-production, co-design inclusion, even it's not a panacea because then it's not easy to do. Because there are a number of barriers, some of which are to do with the way that science is conventionally done, and research is done and the way we're all used to doing research. Sometimes those factors, this might just need to be changed a bit in order to be more inclusive. 
But I think the second point I want to emphasise is the need to move away from assumptions of vulnerability. I wish it their worst form of the journalism or protectionism or something like that. It is often the case that it's assumed first of all, that if someone with disability is involved in research, then they're necessarily, you know, the object or the subject, the participant, not necessarily one of the researchers
We all know the sort of history of horrors that have brought in the ethical framework that we use in research and those continue to be appropriate. But it can be really demoralising and demeaning if another person with disability goes into a research process and be immediately perceived as being the person who needs protecting from something terrible that's going to happen. As being at least competent perhaps to contribute to the research process and to the thinking around it and around its implementation.
I think we've come a long way in moving away from the language of vulnerability sometimes to the extent that in some of the documents and guidelines, it's not entirely clear what people are talking about because we're trying not to use that word. But we need to find a happy medium somewhere in which it is the right of people with disability to be involved in research is respected at the same time as the particular frameworks that might be needed are also available.

17:05 Dr Julie Glover
Thanks, Jackie.
Yvonne, did you want to add something to that one?

17:10 Yvonne Parnell
Yes, I agree with Jackie that there's a right for people with disability to be involved and really in simple terms, I think it's involving people with disability in the research that you're doing right from the outset, from the start.
I think, don't assume to know what's best without consulting with the people who will benefit or be impacted. Really inclusive and informed research for me brings together people from a range of different groups, including people with the lived experience of disability and all types of disability.
In some cases, it might be their families and their supporters, it might be advocates or it might even be service providers. It's really thinking broadly about who you can incorporate in your research to get that perspective.
I think it's also really important to acknowledge that people with disability lived experience, as with many consumers, have often not had any research experience. I think there must be a willingness to support people by creating opportunities for those individuals to learn and grow and work collaboratively with the researchers in co-design, which as we all know, will inform better research outcomes.

18:36 Dr Julie Glover
Thanks, Yvonne. 
Comes back to that quality of research as well.
The next question is around technological and social innovations and how they can be leveraged to improve accessibility and inclusion for people with disabilities.
Who's got some ideas around this one?

18:54 Yvonne Parnell
I can start.

19:01 Dr Julie Glover
Thanks, Yvonne.

19:02 Yvonne Parnell
Preface it with saying I'm not an expert in this area, but it's such a rapidly advancing space.
We've already seen benefits of things like this that we're doing today in the rapid rise of tech with Zoom and Teams, which really have allowed people with disability to significantly increase access to be involved in research. I think that that that's been fantastic.
Really the same applies to the ever-increasing range of digital products such as supporting people with disabilities like epilepsy, mobility and audio-visual impairment, so it’s actually quite an exciting space.
But of course, at the moment all the talk is about AI, which is set to really transform the landscape of health and medical research, and I think will require some very robust policy and regulatory frameworks around health and medical research.
There is a recognised but really unintended consequence for people with disability around the AI space, and that is that the vast data that's collected for AI, there's a possibility that may reinforce old biases and old discrimination types if that data is not appropriately informed and moderated by people with the lived experience of disability.
I think we need to be very careful about that as we move down that pathway.

20:48 Dr Julie Glover
Thanks, Yvonne.
Jackie, did you have anything on this one?

20:54 Professor Jackie Leach Scully
Yeah, I think it's obvious that there are technological advances, not just in pieces of equipment, you know, assistive devices or devices that aren't really seen as assistive, but just work for the general population and then increase in some ways access for different kinds of people with disability and that is great.
Within health research, speeding up health research, giving access to insights that previously weren't there. I think that that's true and fine and good. I'm really interested though, in the phrasing of this question about that includes social innovation as well, because effectively social innovation, it includes things like changing attitudes towards people with disability. That's precisely why we're having this conversation.
We wouldn't have been having it, let's say 30-40 years ago because the social attitudes were just so different that nobody would have thought of doing something like this.
I think notwithstanding the UN and it's Convention on the Rights of Persons with Disability, though I think there's the growing recognition that it's a statement of the obvious, but disability is complex and it's not just a medical problem. The experience of disability for real lived people is it's infected by many other things, the social factors, environmental factors, etcetera.
That part of the social innovation I think is becoming aware of that and realising that you need all these different perspectives to consider life with a disability and maybe what needs to be done to improve the quality of life and improve inclusion and improve equity for people with disability.
But one thing I would say, I think is that not notwithstanding my own liking for technology and my awareness, that I wouldn't be here and I wouldn't be alive if it weren't for technology. There are changes in practice that create the conditions for better inclusion and equity don't always have to be very high tech or very expensive.
A lot of them I've found in the past are to do with changes in timing and expectations of how quickly something is going to be done, whether it's a meeting or a piece of research and sometimes relying on technology can increase exclusion. Increased inclusion for some people, but increased exclusion for others.
One example would be an AI based voice recognition for example, which works fabulously well for me in providing captioning for me in meetings like this. But may actually end up excluding people with speech impediments that are not recognised by the AI and therefore they are excluded in a number of areas where voice recognition might be present, but not very obvious.

24:04 Dr Julie Glover
Thanks, Jackie.
Adam.

24:12 Adam Johnstone
Look I might just add, perhaps a bit of a tangent, but picking up some of Jackie's points. Technology is wonderful until the power goes off and you realise just how much of the things rely on power.
Look, this is an opportunity to very seriously advise everyone. Can I get everyone to go into their search engine of choice and look up the Energy Charter and the Better Together Initiative? Because if you know someone who is on a life support register and is reliant on power, there are going to be some changes.
Only 7% of people on this list who need the power, only 7% of them have a backup plan. I mean, that's one example of where, yes, power and technology are wonderful, but the moment the power is gone in a storm or something like that, some people are at real risk.
While I, like everyone, celebrate modern technology, I also want to acknowledge that it comes with real risk and as a lawyer, I look at all the data being vacuumed up by AI and various data systems in social security and the NDIS and other government and non-government agencies and wonder who owns that data? How readily is it identifiable? Do we know the answers to these questions? We probably don't, and I think we should ask a lot of questions about who holds our data, for how long, how safely, and what are they doing with it.
I mean, I'm quite happy for it to be kept for bona fide scientific purposes, but then there are other purposes, some of which may be beneficial, some of which may not be.

26:23 Dr Julie Glover
Thanks Adam.
I think the data issue has been around for a while, but the technology is ramping up those requirements and the need to be really clear and understand the use and have good governance around our data.
How can organisations, like NHMRC, how can we support and amplify the leadership of persons with disabilities? 
Yvonne.

26:52 Yvonne Parnell
Look, I think in my experience of health primarily it's the adoption of an organisational culture that is authentic in involving people with disability across all aspects of what the organisation does.
This includes, I think, ensuring people with disability are employed at every level of the organisation and that equal opportunity is given to grow and to advance.
Organisations really need to continue developing their disability awareness and capacity and make adjustments where necessary to accommodate individual needs, keeping in mind that disability is really highly nuanced, and disability is not always obvious.
There are disabilities that are hidden, and to take account of that inclusion should never really be driven by a compliance agenda. It really needs organisations to be genuine in their desire to understand the barriers that are faced by people with disability, to eliminate inequity and to really be inclusive. Those barriers, the physical barriers, social, structural, even financial barriers, there's others that people with disability are facing every day.
It’s really getting a really genuine understanding of those barriers and seeing what can be done to eliminate those barriers.
In terms of the NHMRC, I think they continue to structure grants specifically to benefit the needs of people with disability. I think that's really important, as well as continue to involve consumers, including those with disability on its committees and in its grant review processes. I think that's been really valuable, having people with disability involved and has made the organisation a lot more inclusive.

29:10 Dr Julie Glover
Thanks Yvonne.
Jackie

29:10 Professor Jackie Leach Scully
I think I support all of that.
One aspect about the culture, I guess is that any organisation will have people with disability within it. Any organisation of a reasonable size. It's not always apparent and one reason why it's not always apparent it's not something that one would necessarily want to be, you know, pointing the finger at people with disability.
But the climate, the culture might make it impossible for people with disability just to be open. I mean, we still tend to use the language in applications and elsewhere about disclosing disability as if it was something like criminal conviction that might be a liability and so on. Rather than phrasing it as is there anything in particular that would make it easier for you to do your work or make it possible for you to do your work better within the context of this organisation?
When that happens and people with disability become visible even in sometimes very subtle ways, then I think that will inevitably shift the culture incrementally forward as it normalises the presence of people with disability.
It means that new people coming in know that they will be accepted, and they also have somebody to look at and to aim for. You know we viewed a couple of slogans before in this webinar. There's also you can't be what you can't see or what you don't see.
Growing up at school, at university and then as a young researcher in the lab, I didn't know anybody else with deafness or with any kind of disability except one academic at the university that I went to, not in my field. It's important to be able to know that you can aim for that, and it will be expected as any other human characteristic might be.
Ultimately, I think that in a very big practical sense, because that's kind of fairly aspirational and maybe quite vague, it will often come down to money and to being prepared to put some hard cash towards not providing special accommodations or adjustments, but changing the environment of the workplace, in such a way that it is inclusive. I think it's important to think about that in that way as making it better for everybody, rather than having to spend money in order to adjust it for a few special people.
You would really want organisational practices and an environment in which inclusion is standard. It's just standard operational procedure and ultimately we don't have to think about it, especially because it is just done.

32:07 Dr Julie Glover
Thanks, Jackie.
Adam.

32:14 Adam Johnstone
Yeah, look, I mean, again, this is furious agreement.
The only thing I would add is that I think compliance can be a useful prompt because look, I can very proudly say that I know that my LHD has a number of specific disability policies in terms of access, not only for patients but also for potential staff.
Where we are addressing and reviewing the issues and we’re consciously writing procedures down, we're consciously doing things to try and make both the service experience for patients and family as well as staff as trouble free and as reasonable as possible. Yes, we do definitely have a focus on making any of the reasonable adjustments we can.
Look, I'll admit myself being around in the various committees that I have been, I have prompted others to amend things like doors, simple things on their own. But little bit by little bit you see organisations and buildings and approaches and plans change as people learn and I take people at their word, and I think most people approach things with goodwill.
I think there's also though, a responsibility on us to approach people with a similar goodwill. I mean, I'm always happy to answer questions about my condition because again, I may be different from everyone else in the room. Naturally, people will be curious at times. It is far easier to answer that question and start a conversation and show by your very nature that you're not frightened of answering that question.
You don't take offence to answering that question and then you feel a whole room or an individual relax and you can talk about them, talk with them about a whole range of things which don't necessarily need to relate to disability at all. But most importantly, you've broken the ice.
Now I know that some will take the view of, oh, I shouldn't have to do that. I do find it very useful at times that.

35:01 Dr Julie Glover
Thank you.
Another question we've got is about steps that we can take in our own lives and in our communities to support and celebrate the achievements of people with disabilities.
We've touched on some of those things, but does anyone have anything else they'd like to add to that one?
Jackie.

35:23 Professor Jackie Leach Scully
I guess as you say, we've touched on several of those already.
I think in all contexts, let's say, trying to press for awareness and to include people in with disability in the conversation.
If it's thinking about things like, who do I have on this committee or how do I make my workplace more accessible than, you know, asking the right people those questions.
One of the difficulties of course, is that visibility is hugely heterogeneous, and I might have a lot of experience with deafness, but I won't necessarily be able to give any kind of advice about mobility impairments or visual impairments or anything of that nature so that does make things complicated.
Being aware of that and being aware that if you happen to have somebody with a disability in your organisation, they're not necessarily the expert on absolutely every aspect.
If you treat them like that, then one of the difficulties there is you know, is burnout, exhaustion and I suppose the level of offensiveness about being treated as valuable for your knowledge about disability, but maybe not very much else. I've not often experienced that, but I think that can be an issue.
But you're pressing for inclusion and the necessary changes at the moment, as I said before, to become standard, to become just what we do and you know, essentially in the end to stop having to think about this because we have actually got to that point. But we're way, way off there at the moment, so we still have to do, I think the policies and the checklist and the consciousness raising and they're constantly reminding people that we're not there yet until it does become an inclusive environment.

37:31 Dr Julie Glover
Yvonne, did you have anything to add?

37:36 Yvonne Parnell
Yeah, I think Jackie makes a good point there about just because somebody has a disability, it really doesn't make them an expert in all disability. That was why I said earlier about it's quite nuanced and you really have to be aware of that.
The time I spent working with people with intellectual disability, we saw that a lot where people with other types of physical disability felt that they could speak on behalf of people with intellectual disability, which of course doesn't really work. There was always a bit of a divide between those groups and a challenge for the peak bodies to work through some of those issues. It is something to be aware of.
I think there's lots of ways actually that you could celebrate the achievements of people with disability in your teams and in your own communities. An example might be perhaps holding an event with your work team or even your friendship group. Why not? And talk about and acknowledge people with disability and in doing that, agree some tangible steps that you could take to actually be more inclusive.
I think if you were having a team meeting like that, you could discuss in that meeting how you can better involve people with disability in your research, specific to a particular type of research, or maybe it's more broadly how you might involve people with disability and new committees, etcetera.
There are other ways of course, you could post positive messages of inclusion about what you're doing in your organisation on social media, etcetera. At an individual level you could gain more knowledge in this area. There is so much information out there. You could watch and listen to stories and experiences of people with disability that are really widely available on lots of different websites.
I would encourage attendees to have a look at that, see what they can find and just try to get a little bit more knowledgeable about the issues around disability and what some of the barriers might be if you are intending to involve people with disability and research that you're doing.

40:06 Dr Julie Glover
Thanks, Yvonne.
Adam, did you have anything to add to that one?

40:11 Adam Johnstone
Yes, look, I did.
Thank you, Julie.
I would say to everyone, really 2 important things. It's not just making it to the committee, it's what you do when you get there.
So have a think before you're appointed or if you're offered an appointment, what is this committee or board about? What do I think I can contribute and take care to read a board or committee papers and pick up one or two issues that you can say with some certainty. Oh, I can speak with authority, or I have a couple of questions here, and what you then do is you build a credibility over time.
You should look at everything as a medium to long term engagement and a medium to long term building process. I think equally when you're in a process or a meeting of whatever nature, also be interested in what all the other parties are doing. Never be afraid to jump in and support somebody else's idea or support a question they might be raising because then that shows you as a multifaceted person interested in a range of issues for the organisation so that overtime you will be less and less considered the representative of patients or the representative of disability.
Yes, you might still hold that seat, but you're also increasingly expected to speak on a range of issues at meetings that affect your organisation.

42:15 Dr Julie Glover
Thanks, Jackie.

42:17 Professor Jackie Leach Scully
Yeah, I just wanted to add to that. I think that is very important.
One thing I've noticed over the years, not just with myself but with other researchers with disability, one of the reasons for a reluctance to talk about yourself as having a disability is not wanting to get in a sense, pigeonholed or ghettoised.
If you're a medical researcher in particular, you may not necessarily be interested in doing medical or scientific research in anything to do with anything related to your impairment or anybody else's impairment. But that tends to be the assumption as soon as you start talking about the particular needs you might have as a researcher or an academic disability. So that's one thing.
Another point I think I'd really like to emphasise is that you can have researchers and members of your organisation who are disabled but are not necessarily having any interest at all in issues to do with disability. It's still valuable to be there.
But I think that the second thing is also that, as Yvonne was making the point, often inclusion of disability, particularly in complicated organisations like universities or the NHMRC and so on, tops that the line of physical disability. There's an assumption that people with intellectual disability don't really play a role directly within that organisation. Since coming to Australia, I've been involved in a couple of projects in my university in which we have co-researchers with people with disability. I'll be open about my own prejudice there. When I came into that, I could not see how they could possibly be part of a team. One step that happened was that we always produce our agendas and minutes and so on in easy read and it is fabulous because it just underlines how unnecessarily wordy and complicated most of our official documents are. Being forced to produce something in a very simple format so that it is accessible to everybody certainly made my life easier in terms of how I can read these things and how easy they are to comprehend.
There's the benefit to definitely go more than just one way. It's a fabulous example of making it better for everyone. Thank you so much that that was some really great examples for us.

44:45 Dr Julie Glover
Now we've got a chance if there are any questions from the audience.
You can either pop your question in the chat or if you would like to take yourself off, mute, put your camera on, you can ask the question that way as well.
I can't see so far, any questions in the chat, see if there's any questions coming through.

45:28 Audience
I have a question, Julie.
I was thinking about how there's a really broad range of disabilities, like they can be physical, they can be intellectual and then you can make adjustments for people in a workplace.
I guess I'm not really talking about research, but do you, I find that if people have mental illnesses that I'm not sure if they're disabilities, but can you comment on about how they’re looked at and whether it's a good idea or not to disclose them?
Like, I mean, if you've got a physical disability, that's obvious. People are going to go, oh yeah, sure. But you might have something else that you might feel afraid to tell people about.

46:17 Dr Julie Glover
Thanks. Fabulous question.
Does any of our panel want to respond to that one, Adam?

46:24 Adam Johnstone
Yeah. Look, I can't give you know, advice in specific circumstances, but I can say from my experience with my LHD’s mental health, drug and alcohol service we do have consumer peer workers. They are paid workers who have lived experience of mental illness or a drug and alcohol complaints. They are some of the most down to earth people I have ever met because they've been to the darkest places imaginable, and they've come back.
Now legally, in some situations in open employment, you may be obliged to disclose certain illnesses depending upon the nature of the work. Now somebody would have to go and get legal advice or employment advice as to what they should and should not disclose. But I would say do not lose hope because with the right medical and psychological care, I have met any number of people who do day to day jobs just like anyone else who live on their own, who are quite emotionally and mentally stable, you wouldn't know they'd had mental health concerns from looking at them on the street. They are probably better adjusted people than many of us.
So yes, mental health concerns have been listed at times as disabilities and particularly when people are having an episode of mental illness it would fit the criteria under the Disability Discrimination Act of what is a disability. But it should not of its own prevent somebody from seeking and gaining employment. The question is doing the clinical and other supports that that person needs so that they can function well to do the job that they wish to do.

49:01 Audience
Thank you so much. It's very informative.

49:04 Professor Jackie Leach Scully
Can I just add that I think it's we have to acknowledge that there's still an enormous amount of stigma around about mental health issues and mental illness. From experience with my colleagues and co-workers, one of the best approaches is just to be upfront, but very factual about it and in that, providing the fact, be as reassuring as you can be. Coworkers tend to be frightened about what might happen, you know, so an explanation and the same goes for things like if a diabetic person is going to go into a hypoglycaemic attack or possibly a seizure or something of that kind. Just to explain this is what might happen, this is what it will look like, and this is what I might need.
For employers are going to be potentially concerned that you might let them down. You might be more expensive than another kind of employee, but if you can explain this is what's happening, this is how it's controlled, this in a sense this is the worst that can happen if it is controlled, I'm an employee just like any other. Hopefully that that level of, as Adam said, sort of down to earth-ness will help get over the acknowledged fear, the stigma and take us further into an area which I think we're already progressing into put it in place where it's much more possible to talk about one's depression or one's medically controlled mental health problem.

50:49 Dr Julie Glover
Thank you.
Yvonne, anything else to add on that one?

50:58 Yvonne Parnell
No, I don't think so.
I think Adam and Jackie have covered that one pretty well.

51:03 Dr Julie Glover
Great.
Any other questions? I might take the chairs prerogative.
We're developing a Disability Inclusion Action Plan.
I've already taken a huge number of tips and practical things out of your talks today. But would any of the speakers have any particular suggestions for us, for our plan?

51:38 Adam Johnstone
If I might jump in there? Because I don't think the International Day of Persons with a Disability should stand alone. Actually, I think next to it should be the International Day of Carers and Families. I don't know whether there is one, but there certainly should be one because I think probably people with disabilities are more reliant on family and carers than possibly any other group in the community.
But when we come to speak about disability, just like when we come to speak about hospital patients, we tend to focus on the patient or the person with disability, almost to the exclusion of the family and the carer.
Given that my mother, and I'm 51, so take a guess at her age, has been my lifelong carer and is still my lifelong carer and my dad was too when he was alive, so they were both heavily involved. But it's incalculable, both the money and hours that family carers have saved the community and the government, but also the physical, economic and social costs they have paid and keep paying every day. They continue to support us. 
I don't believe that any disability action plan can truly be separate, separated from plans to support carers and families. I make the analogy to health carers spend so much time worrying about the health and well-being of their disabled loved one, they tend to put their own health and well-being on the back burner again, again and again. I think that's an important issue, not only in health, but in the treatment and the recognition of carers and families generally.

54:00 Dr Julie Glover
Thanks, Adam.
That's a fabulous tip.
Well, I think we should wind up there.
I know we could probably keep going with some more discussion, but I'd really just wanted to thank everyone for joining us today for our December Speaking of Science webinar in recognition of International Day of Persons with Disabilities.
We've already talked about, although it is one day in the calendar, we of course need to think about the ongoing actions that we need to take both in our work lives and also in our home lives and in our work in the community.
I wanted to especially thank Jackie, Adam and Yvonne for their contributions and for so generously sharing their wisdom and advice and really great practical tips for all of us, how we can make an impact in promoting community awareness, understanding and also really accepting and learning from people with disability and celebrating achievements as well.
Thank you to everyone who joined us online. We really appreciate and value your contributions to the Speaking of Science initiatives that we undertook for the first time in 2024. We've had a fabulous amount of support for the series. It will be back; it will start again in February 2025. So keep providing your ideas to us so that the series is tailored to what you would like to hear about.
A reminder that a recording of this session will be available online shortly.
A big special thanks to our Speaking of Science team, our communications team, who've done a fabulous amount of work over the year, and it's been really appreciated.
Thanks again to our panel and thanks to you all and have a great rest of the day.

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