Connecting ALS

Welcome to Connecting ALS. Today we discuss making video games more accessible to those living with ALS.

Show Notes

This week Jeremy talks to a team of researchers in Australia who are looking into the ways video games can be more accessible for gamers living with ALS.
 
Follow Dr. Kirsten Harley’s story at https://kirstenharleymnd.home.blog/author/drkirstenharley/
 
Learn more about research into making video games more inclusive at https://www.mndaustralia.org.au/articles/why-videogames-matter-for-mnd-these-holidays

This episode is brought to you by The ALS Association in partnership with CitizenRacecar.

What is Connecting ALS?

Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.

This transcript was exported on Jan 25, 2023 - view latest version here.

Dr. Matthew:
I've learned so much from working with Kirsten, working with Tash, working with Ben. I'm just excited. I'm really excited to see how much fun we can have with the NND community and how we can actually hopefully transform gaming through looking at how people play and how we can reduce those barriers to play.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host Jeremy Holden. According to a research article published in a 2020 issue of the journal simulation and gaming, more than 65% of adults in America play video games averaging roughly five hours per week. Which means it's not just those pesky kids who won't manage their screen time, who were driving the more than $56 billion spent on video games last year. And that's not surprising. The first in-home video game console was introduced more than 50 years ago. That means that many of today's adults were once those pesky kids who couldn't manage their screen time. And what is true of adults generally, and this should go without saying, is also true for people living with ALS.
Research shows that people with ALS around the world play video games to connect with friends and family, as an interesting way to raise funds for ALS organizations in their countries and simply for the fun of playing video games. But with declining motor functions, people living with ALS often lose the ability to play video games and that's a problem. After all. One of the components of making ALS livable is enhancing the quality of life for people living with the disease. That includes optimizing opportunities for people with ALS to have fun, to pursue the things that bring them joy. According to researchers looking into this issue, "Simply having an opportunity to enjoy the fun and pleasure of hobbies, like playing video games has also been found to be important for reducing the worry of what lies ahead when living with a terminal illness and for creating memories and spending quality time with family and loved ones."
Now that comes from a research article that was published in 2021 by researchers out of Australia who want to get a lay of the landscape on video game accessibility for people living with MND as it is known in Australia. One of the researchers on that team was Dr. Kirsten Harley, honorary lecturer in the faculty of Medicine and Health at the University of Sydney and a board member of MND New South Wales. 10 years ago, Kirsten was diagnosed with MND. As Kirsten's disease progressed, one of the things that took away from her was her ability to play games on her tablet and her laptop. So she started to look for ways to tap into assistive technology to allow her to continue gaming.
Dr. Harley and her research colleagues are now on a quest to figure out ways to make life more enjoyable for people living with ALS/MND who derive joy out of gaming to learn more about their work, which they presented in December at the Allied Professionals Forum in San Diego. I recently sat down with members from of the team, Dr. Harley, along with Dr. Matthew Harrison, senior lecturer and learning intervention at Melbourne Graduate School of Education. And Dr. Natasha Dwyer, senior lecturer in the College of Arts and Education at Victoria University in Melbourne. A fourth member of their research team, Dr. Ben O'Mara, an adjunct fellow at the Center for Social Impact at the University of New South Wales, an information resources manager at Motor Neuron Disease Australia was unable to join the conversation due to a family emergency. Let's hear now about their research.
First of all, I want to thank all of you for being with us this week on Connecting ALS.
Dr. Matthew:
Thank you for having us. Very exciting to be here.
Jeremy Holden:
Yeah, so it's a great topic to talk about and I had the great pleasure of watching your presentation at the International Alliance of ALS/MND Associations and Alliance of Allied Professionals out in San Diego. So really excited to bring this conversation to listeners. Kristen, I want to start with you. Can you tell listeners a little bit about yourself and your connection to ALS?
Dr. Kirsten Harley:
Hi Jeremy. Thanks for inviting us to share our research with you and your listeners. I'm Kirsten Harley, an honoring lecturer in the Center for Disability Research and Policy at the University of Sydney, and a board member of MFD New South Wales. As listeners may have guessed from my voice, I am a person living with ALS, which in Australia we tend to call motor neuron disease or MND. I was an active 23 year old academic and mom to six year old Timmy when my husband and I were given the devastating news that I have MND. the clinic nurse accurately described it as a shit sandwich of a disease. MND has progressively taken more and more from me and my family.
Now I cannot move apart from my face. A ventilator breathes for me. I am fed through a tube and I speak using the synthetic voice, Ryan. I need carers to do almost everything for me, but I can, think, write, smile, play and love. I am thankful for the love and support of my beautiful family and friends and excellent care. And I am grateful beyond words that this month we've celebrated the 10th anniversary since my diagnosis, 10 years with my precious comedian Densil, 10 years as a sister, daughter and young friend.
Jeremy Holden:
Over the moon to be with you here 10 years in and you touch on, I think that I think is really important in that, in it's that ability to smile, love, laugh. I don't remember the exact quote, but it's very meaningful. Your Twitter profile, you describe yourself as an honorary lecturer, a parent and partner, a sociologist, an aquaphile, an ex runner, a maths nerd, a coffee addict, and a vego or vegetarian for our American listeners. How did you get involved with a research team that is investigating ways to make video games inclusive for people who are living with ALS or as you said, MND in other parts of the world?
Dr. Kirsten Harley:
So I have always enjoyed playing games, whether sitting around a table playing 500 or board games or playing puzzle or word games on my screen. As my motor neuron disease has progressed and taken from me so many of the activities I previously enjoyed, I have really appreciated the way that assistive technology has enabled me to have fun, special moments connecting with family, playing games on my phone. On my blog, I have written about the fantastic NeuroNode I used to control my phone, including playing games by lifting my superhero eyebrows. Our excellent team leader, Ben O'Mara, read my blog and invited me to join the research project on making video games more inclusive for people living with MNS or ALS. It's been terrific meeting as a team that includes different research backgrounds and perspectives, but is united by the goal of making gaming inclusive and fun.
Jeremy Holden:
And Ben unfortunately unable to be with us and we were wishing him and his family his best. But I want to bring the rest of the team is Matt, I'll start with you. What do we know at this point about the opportunities to make video games more inclusive? What are some of the challenges and what are some of the opportunities that exist today?
Dr. Matthew:
Yeah, thanks Jeremy. That's just working with Kirsten and Ben and TAs has been such a wonderful experience. So we really want to explore how we can position gaming or reposition gaming as a way to keep people connected as they go through a similar experience to as Kirsten has told us about, which is obviously very difficult. So we conducted a scoping review. Well, we looked at research from around the world. We wanted to find out what do we actually know about making gaming inclusive for people who are experiencing these changes in their physical capabilities and what can we do to be able to harness this to keep people connected? So we looked at literature from around the world. We tried to keep it in the last 10 years and we want to really try to find the voices of people who actually have undergone or are living with MND or ALS, and to be able to see what they think works best for them.
Because that's so important. And what we found was disappointingly, but not surprising was that there's actually very little that voice in the academic literature. So we looked at what's called the gray literature, blogs like Kirsten's, people who are actually living here are documenting. And that has been an absolute gold mine for finding out what people are doing, how they're hacking existing gaming systems to be able to make it accessible for more people. And that's really where I think we've found that the really good stuff. I'd say the meat on the barn so to speak, or the tofu in Kirsten's case as a vegetarian.
Jeremy Holden:
I love it. Tasha, when we first started talking about this conversation, and this is something that Matt and I talked about when we had the opportunity to chat out in San Diego, but I was thinking about the potential therapeutic benefit of this, but this can really transcend that and setting aside the potential for a therapeutic benefit, what is the value of looking at things like optimizing the ability for people with motor neuron challenges to play video games, to make video games more inclusive just for the sake of fun?
Dr. Natasha Dwyer:
So what we've found is the importance of connection and being able to have a space where it's okay to be able to forget about the world for a while. That's come out in the great literature and as Matt was talking about the tofu sheath, there's such a wealth of expertise from lived experience and people sharing tips on what they've found. And anyone with an interest in inclusivity would need to be able to keep this material on their radar to be able to see how new technologies are being adopted and where the strengths are, where's the weaknesses, and how do we mitigate where there might be a problem with the tech to be able to work out how to fix it. And as well as individuals networking, local initiatives are up to amazing things as well, like the Makers Making Change initiative, which have a library of open source devices that could be made and customized and are leading the way with 3D printed joysticks. And of course using that to leverage change within mainstream hardware and software game plans as in industry and developers.
Jeremy Holden:
I want to get the potential of industry developers and their willingness or potential willingness to be partners on this. But you mentioned an important word there, and I think that's the connectivity. And when I think back to when I was a kid, I don't want to... Well, I date myself on the show too frequently and I always say I don't want to do that. But when I think back to when I was a kid playing Donkey Kong or Q*bert or the advanced game of Super Mario Brothers.
Dr. Matthew:
You're in good company here, Jeremy. I have to say. Kirsten, Tash and myself and Ben can very much relate.
Jeremy Holden:
Yes, right? That's right, for sure. But the connectivity was like potentially you could have your neighbors over to grab the second controller, but games are far more connective today than they used to be. So talk a little bit, and this is for anybody, talk a little bit about the connective potential of making games inclusive.
Dr. Natasha Dwyer:
I'll send that one to Matt and Kirsten if you don't mind.
Dr. Matthew:
Yeah, no worries. I was just thinking Kirsten provides this wonderful example, Jeremy, of the idea of building in Minecraft when the interface with the hardware wasn't working the way expected. So she couldn't play, but she could watch her daughter and her husband playing Minecraft and give feedback through the communication system she had. But then the NeuroNode device that she's describing now, she was using to play turn base games like Monument, and we share a love of that particular game. The idea of turn base games and being able to interact directly with people and connect with people even through online spaces through these alternative interfaces is really the idea of hardware affording connection.
The idea that is reducing those barriers to allow people to connect through ways that maybe they connected before their diagnosis or even new ways, finding different ways, alternative ways to connect through this hardware. So we talking about social connection, I think it's really what we as humans all want. And I work predominantly with the autistic community and there's that stereotype of people don't want to connect. Of course they do. I think that's what makes us human is that need for connection. And I think something like in a digestive AMD like Kirsten's story is so powerful because it shows how important that keeping that connection is in defining who we are as people.
Jeremy Holden:
Talked a little bit about developers, what have you seen, whether it's in the gray literature or as you explore this opportunity to make video games more inclusive, a potential for game developers to be willing partners to develop games that are more inclusive?
Dr. Matthew:
Tash, this ones for you.
Dr. Natasha Dwyer:
Sure. So that the literature I've been reading is more about individuals and organizations had modeling over the nuances of how to get these games going rather than the willingness of industry to be able to work with this. And I know there's disappointments as well that are recorded in these blogs of companies saying, "Woo hoo, we've done all this woo hoo work." And actually it's lip service, but there is genuine attempts as well. But the material I've been reading in the grade literature is for instance, working out how to deal with stiff controls and also about the issue of changing attitudes about level of difficulty in gaming and that it shouldn't be an issue, which of course is a win for everybody. The mobile game hardware developers are the hardware space there, they're the ones that caught the biggest flack for not adapting is my understanding from the gray literature, and I'm sure Matt and Kirsten have more to add on that one.
Dr. Matthew:
It's really interesting, I think Tash, because in this case we see groups like Able Gamers who are going around and they're hacking controllers to make them more accessible or finding ways to bridge interfaces like Kirsten's NeuroNode device that she was speaking about earlier with existing games and to make them compatible and to make it work. And that has, I don't want to use the word shame, but it is really given the major companies, it's shown them that there's a need there and it's kind of shown them the light and the way, and Sony of PlayStation fame just announced they've got a new accessible controller and it seems to be built very similar way to the Microsoft Adaptive Control that was released a few years ago, so I'm optimistic the companies are started to take accessibility and inclusion more seriously, but this drive has really come from the community.
I think that's something that's not acknowledged in the academic research that a lot of this hasn't been driven by big labs, but it's been driven by people like Kirsten, Kirsten's family, people like that who have this lived experience and see this need and want to keep playing together. And then they've had to go online and read blogs and go onto YouTube videos and modify existing hardware. And there's been enough groundswell, enough talk about that through that gray literature that the gaming companies are starting to have to take this seriously because if they don't, people are sort of calling them out on it saying, this game is inaccessible to a large section of our community.
Jeremy Holden:
Yeah. It's important, that kind of public pressure component of things. I've been around enough research to know that the conclusion is often more research is needed, but where are we now and where does this fight, where does this campaign go from here? What's the future look like in terms of making gaming more accessible?
Dr. Natasha Dwyer:
Before we hop to that, I would just like to remind Matt of the concept you are really interested in both the rating for accessibility to have a sticker on a game.
Dr. Matthew:
Yes, thank you, Tash. We did have this idea that games should be like the way that we rate for content, whether it's appropriate for children or for adults. Having an accessibility rating that's mandatory on the game box and makes it really visible and really easy for people to see whether this game is an inclusive game or whether this game creates barriers to users who use alternative interfaces like Kirsten. So we would love to see that mandated across around the world like the PEGI system is around the world. That's the age-based rating system for video games. There's different versions that used in different countries.
But we would love to see in the Australian context, the US context, right around the world, some sort of rating on accessibility features and that would hopefully drive the industry to investing more in this space. Like I said previously, I think there already is happening in terms of there already is investment now and that's come from that public ground swell. But this I think would really speed things up and get people thinking about accessibility as not an optional extra. It's an integral part of the experience. So in terms of where we're going, Tash, I was thinking about BCIs, I was thinking about, I know you've done a lot of reading in this space. Do you want to talk a bit about BCIs, explain what they are?
Dr. Natasha Dwyer:
I struggle, but I'd just like to hop in with a answering Jeremy's question about future steps and coming from a completely different angle, working out how to deal with the learning curve of using this technology so that it's not a formidable task for somebody to just hop on board so people who are new to gaming can be able to get that connection, would be one way in which is to do with of course design, but it's also to do with I guess, training as well.
So the BCI space, that's the brain computer interface of course, and that's about looking at ways that can be used as a game controller. I probably haven't done a very good explanation of that, but as we've discussed that some of the studies that we've found, the games that they're using with people are pretty, well, it's boring. Boring game like Tic-Tac-Toe. Some people might like that, but that if that interactivity of the game was stripped away, that anything could be put on top of that. So we're hoping that there'll be more research in the future that's not just looking at the technical component, but also the design component.
Jeremy Holden:
I want to circle back to this idea of having fun for the sake and for the intrinsic value of having fun. And you talk about some of the BCI technology, which from my perspective seems pretty cutting edge, but an exciting space. Do you sense that using cutting edge technology for the sake of simply having fun gets brushed aside for things that we maybe put greater value on it, we put higher on the Maslow hierarchy of need, like are those lost opportunities to say, here's cutting edge technology and let's just tap into this to allow people to have fun simply for the sake of having fun.
Dr. Matthew:
I can see Kirsten using her superpower eyebrows to say absolutely yes. And I agree personally, I think Tash, the idea that fun and joy as an outcome in itself is often overlooked, whether it's health or education or whatever space you're in. The idea that life is precious and having these moments of joy that you share with people in and of themselves is so important. And we see that in the blogs. We see that in the vlogs and the gray literature. Unfortunately, the academic side, I have to say we must be a pretty boring bunch because all of the studies, we reviewed 1,715 studies, particularly in the health space, but also the education space, and very few really cared about whether the people actually enjoyed using these technologies.
And as Tash was saying, people are playing these games which will really seem to be functional tests of whether the technology worked or not. It wasn't really asking, do people actually want to do this with their time? And you mentioned Super Mario Brothers, I would much rather be playing Super Mario Brothers or Monument or Minecraft than playing Tic-Tac-Toe. Don't get me wrong, Tic-Tac-Toe can be fun trouble listeners out there who are big Tic-Tac-Toe fans. So Kirsten's agreeing, but I think personally, I think we should really be thinking about, okay, not just can we do something, but do our participants actually want to be doing this? The way end users actually want to be doing this, this is how they want to spend their time.
Jeremy Holden:
Well, you mentioned Tic-Tac-Toe and Kirsten earlier mentioned 500 and I'm ready for a game of 500. Let's get that set up quickly. Natasha and Matt, did you guys have any closing thoughts before I let you all get back to the important work that you're doing?
Dr. Matthew:
I just think it's such an important space. We're so lucky. We've got Ben O'Mara who couldn't be here today is from Motor Neuron Disease Australia and he works with the Social Impact Center at the University of New South Wales. And I'm just so grateful for him to bring us together to bring Kirsten in with her professional research and her lived experience. Tash with her work at VU around interface design. To bring us all together, I think is such a important part of this project. And I've learned so much from working with Kirsten, working with Tash, working with Ben. I'm just excited. I'm really excited to see how much fun we can have with the MND community and how we can actually hopefully transform gaming through looking at how people play and how we can reduce those barriers to play.
Jeremy Holden:
Yeah. And really transform the lived experience of people who are currently maybe cut out of the gaming community. Team, so this has been a great conversation. I really appreciate your time, really appreciate the work that you're doing and looking forward to what comes next.
Dr. Kirsten Harley:
Thanks, Jeremy.
Dr. Matthew:
Thanks Jerry.
Jeremy Holden:
I want to thank my guests this week, Dr. Kirsten Harley, Dr. Matthew Harrison, and Dr. Natasha Dwyer. I also want to thank their colleague, Dr. Ben O'Mara, for his contribution to this work. We're sending the best to him and his family. If you like this episode, share it with a friend and while you're at it, rate and review Connecting ALS wherever you listen to podcasts. It is a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar. Post-Production by Alex Brower, production Management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.

ConnectingALS_012623_Ready1 (Completed 01/24/23)
Transcript by Rev.com
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