Dr Mick Donegan MBE: Founder and CEO of SpecialEffect

0:00Shop the Sherwin-Williams Fall Sale and get 35 % off paints and stains September 15th through the 21st with prices starting at$29.86. Whether you're refreshing your interior or exterior, we've got the colors to bring your vision to life. And with delivery, getting everything to your door is easier than ever. Shop online to have it delivered or visit your neighborhood Sherwin-Williams store. Click the banner to learn more. Retail sales only, some exclusions apply. See store for details. Delivery available on qualifying orders. Welcome to the Jazz Shapers podcast from Mishkondorea. What you're about to hear was originally broadcast on Jazz FM.

0:36However, the music has been cut due to rights issues.

0:43This is Jazz Shapers with Elliot Moss on Jazz FM. In partnership with Mishkondorea. It's business, but it's personal.

0:56Listen in colour. Welcome to Jazz Shapers with me, Elliot Moss, bringing the shapers of the business world together with the musicians shaping jazz, soul and blues. I'm very pleased to say that my guest today is Dr. Mick Donegan, MBE, the founder and CEO of Special Effect, a charity helping people with severe physical disabilities access and enjoy technology for leisure, creativity and communication. After many years teaching children with learning and physical disabilities, it was as deputy director at the Oxford ACE Centre supporting young people with complex communication needs through technology that Mick found parents were asking him, how can my child make friends when they aren't able to play with others?

1:34Was there anywhere they could go to help children play video games? Launching SpecialEffect in 2007 to fill that technology gap and gathering a small team of technical specialists to try and to modify tech and develop their own interfaces, Mick's efforts to raise money faced skepticism, with newspaper headlines you can imagine bemoaning the impacts of video games. But SpecialEffect has since improved thousands of lives with bespoke technology, including their eye gaze support for people in intensive care and their bubble buster service, tackling long-term medical isolation through home controlled desktop robots.

2:07And they've also supported Microsoft, Sony and PS5 to develop their accessible controllers for playing video games. It's fabulous to have you here. Fire in the belly. I read when I did my usual research on my guests, you had a fire in your belly to go and create this charity. Tell me about that fire in the belly. Right, and I've still got it. Basically, it started because I just realized, as you said before, I was helping children throughout the country from the ACE Centre in Oxford, helping children throughout the country to be able to access their learning because my background's in teaching, access their learning using assistive technology, that special technology to help them to be able to write, et cetera, do their maths, et cetera, and to speak because the children I was working with were very severely physically disabled, so many of them couldn't communicate either in the written form or vocally.

3:01So basically, those are the children that I was helping to access their curriculum more effectively. What happened was the parents then started to come around 2006, 2007, when the brothers and sisters of these children were beginning to play on computer games at home. And parents came to me and said, it would be great if my child and my children could join in and play together because there's no other way for my child to play it's um you know can't ride a bike can't play football can't play netball they can't play tiddlywinks physically so there was nothing that no way to interact you add the fact that these children were non-speaking and making friends and playing with grandma grandad brothers sisters etc it was impossible so they said where else can we go for you know you're with the education, the communication, where else can we go?

3:50And I looked around and there's nowhere, there's nowhere which had the kind of specialist skills that you need if you've got someone with severe physical disability and you want to help them to achieve something using technology. Basically, I knew that video games could be a way to help those children play, not just play, but to play on a level playing field. Because if you give someone the right access to technology, then they can play their brother and sister and beat them, which is something that is really, really difficult in any other form of play for children with disabilities. So basically, having found that there's nowhere else to go, then I just decided, well, I'm just going to have to do it myself.

4:32And at that point, I mean, I was deputy director of a national organization, very, very happy. But then I realized, hang on a minute, there's this big important gap that I could help to fill. And so I just decided, right, I'm going to start a charity to do that. I'm not a particularly confident person, but I'd been fortunate enough to have collaborated with a company in Sweden back in 2003 called Toby to turn their gaze analysis system, which is used for market research and psychological testing. I was lucky enough to get in touch with them to actually discuss the idea of turning that into something instead of receiving information from someone or reading some information the person being in control using eye movement and basically it got a long story short they sent her a little bit of piece of software and then they realized hang on a minute there's a new market here using this technology for people with severe physical challenges and basically it got a long story short they sent a Coda across.

5:33We designed an interface together. Then they started marketing it. Now they're a very, very big successful company, a global company. And it was kind of the confidence that that gave me, if you like, goodness me, I've helped to make this happen that made me think, well, actually, maybe I can make a global difference in this way, which kind of gave me the confidence to go for it. I was lucky enough to get a job at University of East London and basically did that for four years while I was building up the charity, turning it from the kind of organization where we were looking for funds, desperate for funds, because you were mentioning before that with all the newspapers at the time, around 2007, it was all headlines like this, front page, murder by PlayStation, driven to kill by Call of Duty, gaming is as addictive as heroin.

6:25Those are the kind of headlines we're seeing. you were talking about um the serendipity or the the confidence moment when you reached out and the swedish company were developing all this thing how did you just as a quick aside the eye control thing that's a very specific area to get into how did you just briefly become so obsessed with the power of eye control to enable people to do what they wanted yep but i became obsessed by it because I was working in a, I worked in all kinds of schools, but mainstream schools, special schools, and I was working in a school for children with severe physical challenges at that time.

7:01And a lot of these children, it was very effortful. At that time, for children who've got a lot of people, a lot of children, well, adults as well, who have physical disabilities, some of them do sit still, you know, and they can use eye gaze a lot easier. I was working with a lot of children who had conditions like athertoid cerebral palsy. But basically that means it's cerebral palsy but with a lot of involuntary movement. A lot of movement, yeah. Absolutely. So asking those children to use the technology at the time or to either sit still to use the existing gaze tracker or to have the control to press switches or grab a joystick was really difficult for them.

7:38And I just noticed if the child wanted to say something to you, any of the children I was working with wanted to say something, say if they were fed up with what they were doing and they wanted to go out the door whether it was to go to the loo or lunch or just a break, they would make that very clear. It didn't matter what their head was doing, their eyes were fixed on that exit. And I was thinking, hang on a minute, the eye control is working independently of the movement of their body. And then in terms of that being developed, and you obviously work with people who are very severely physically limited.

8:11I have friends who have been paralyzed from the necktie, and then unfortunately seeing people in intensive care, and you're literally unable to move. Absolutely. That power of being, and just go on the website and have a look, whether you've got motor neuron disease, and I've seen some young people with that, or whether one of the kids I read about had a car accident. His father was talking very eloquently about that. It is life-changing to be able to look up from your bed and actually with the movement of your eye or blink to move the click, the cursor. Extraordinary. I mean, how have you, through the time that you have changed people's lives, Mick, how have you managed your own emotional regulation?

8:47Yeah, with great difficulty. I still, I mean, I'll probably tear up at some point just talking about it, seriously. But certain videos that we've done of people that we've helped, and I'm giving a talk, and I have to really work hard to hold it back. The transformation that you can make to people's lives is, you're right, it is life transforming. Well, it's binary. You can't communicate, and you can't involve, and can't engage, and then you can. Absolutely, exactly. And what happened was we started, so basically, you know, gaze tracking is a big part of what we do and a big part of what we bring to all of the people that we help.

9:23We started with access to video games, the charity started with that. Then what happened was, initially it was someone called Matt Hampson, he was playing for the England under-21s rugby team. It was with Leicester Tigers. He, a scrum collapsed, he had a spinal injury, and we were asked to help him. This is way back, I think it was about 20 years ago. And we helped him to use technology, and we used at the time, gaze tracking had just come through. The system that I'd helped develop was a great big screen, et cetera, but I managed to fight my way through the rest of the Leicester Tigers to get to his bedside in the intensive care.

10:00He's much bigger than he sounds, this Dr. Mick fellow. He's a big unit, big unit. But basically, we started using technology with him. What happened then? somebody heard me give a talk and they had a friend whose son was in hospital and he was in intensive care and I suddenly realized, hang on a minute, there's a gap here. We went to, you know, where there's people in intensive care who are unable to communicate. We went and helped this lad, Rob, his name was, and his parents, his family and he were desperate for him to have some kind of entertainment. He'd been lying in bed for weeks by that time.

10:37The hospital didn't... meant to go to York to do PPE, is it that one? Absolutely, exactly, absolutely. Philosophy, politics, economics, sorry. Yep, yep, absolutely, and what happened was we tried to get into the hospital so we could help him using this technology that I'd helped develop, but unfortunately, it was something that hadn't happened before at the hospital, so it took us, I think he'd been in the hospital for about six weeks before we actually managed to get in and help him, but the difference that it made, honestly, we were sort of, I managed to get someone to modify a golf games so that he could play using his eye movement.

11:11He played drafts and chess with his jack. He was a rugby player and, you know, as well as a very bright guy. And he was desperate to compete apart from anything else. He got a whole stack of friends who he wanted to communicate with through email, et cetera. And he was a very good eye gaze user. You know, it was a high spinal injury. So basically he is in effect paralyzed from the neck downwards. With a ventilator, he was able to speak eventually. But initially when you're on a ventilator and intensive care, You can't quite often until you get used to it and they have to fit a cuff and then you can only speak for a little while.

11:45So communication as well as leisure and entertainment. All in one. All in one. And we're going to hear lots, lots more about this, but I urge you to go on the website. It's impossible not to be very moved very quickly, but also you'll see just how much work goes into making these things a reality, making this technology work and adapting it, which I'm going to talk about a lot more with my business shape today. It's Dr. Mick, as his friends call him, Mick Donegan, and he's the founder of Special Effects. Right now, though, we're going to hear a taster from the Michigan Innovation Series, which you can find on all the major podcast platforms.

12:18Lydia Kellett invites business founders to share their practical advice and industry insights for those of you thinking about starting your very own thing, whether that's for profit, whether it's a social enterprise, whether it's a charity. In this clip, we hear from Dr. Max Munford, co-founder and CEO of Oztek, the medtech company on a mission to transform orthopedic surgery through cutting-edge 3D printing technology. The Mishcon Innovation Series. Inspiration from founders of cutting-edge businesses. In association with Jazz Shapers with Mishcon Durea. What advice would you give to those in the early stages of creating a new-to-the-world technology?

12:55When you start building a company, there are three things that become very obvious, and that's that product, process, and people are really important. product, so that's making sure you speak to the right customers, making sure you've got your technology. Absolutely. In lots of ways, that's obvious, especially coming as an engineer by background, that's very obvious. Process, I think, is definitely not obvious to me, actually, but everything in your company, everything, the way you conduct yourself, the way the company runs, all of that, I would sum up as process and is incredibly important. It can, I think, make or break you.

13:27But actually, people, I think, are the most important part of the company. If your processes are wrong, if your product is wrong, the right people can fix them and navigate that so i think making sure at the earliest possible stage that you've integrated the right people making sure as a diverse group of people making sure that your team can actually collaborate making sure you invest time and in some cases money or training in building that team building together i think that's the most important thing you can do the mishcon innovation series in association with jazz shapers with mishcon durea jazz shapers on jazz fm in partnership with Mishkondorea.

14:03It's business, but it's personal. You can hear all our former business shapers. Lucky you on the Jazz Shapers podcast. And you can hear this very program again if you pop Jazz Shapers into your podcast platform of choice. I personally am agnostic. Do whatever you want. My guest today is Dr. Mick Donegan, MBE, the founder and CEO of Special Effect, a charity helping people with severe physical disabilities access and enjoy video games and so much more. I mentioned the gaming thing and we talked about that paradigm of they're bad for you. you've obviously collaborated very closely with the gaming world, whether it's Microsoft, whether it's Sony.

14:36That must be the key to this, because if they're not in, then you're just consistently and constantly working from the outside. How have you managed to collaborate? What's been the secret? What we've done is I just decided that we weren't going to just go straight to them and make a point by tub thumping, you know, by campaigning. So my attitude was the opposite to that, and that was to be a catalyst for change and to make that a smooth transition, really, rather than any confrontation. So basically, the idea was just to show what can be done, just to show. So we'd share videos to show what we were doing and then offer to speak to the games industry.

15:16So basically, what we did was we actually worked with people with disabilities and we hacked our way into their systems. It was all very safe. I had a very, very good technical specialist who was doing the modifications for us. But we would do, you know, for example, we took a game pad, that's the controller, to bits, and then made a few sockets in there so that we could plug alternative kinds of joysticks that you could control with your chin and different switches for the buttons, fire buttons, that you could put on any part of the body that you wanted. So we were able to do that to safely. And then showed them what you've done.

15:51Showed them what we've done. And what did they then say? Great. What did they then want from them? Well, basically what happened eventually is that they then invited us to collaborate, us and others, to join them in designing interfaces that would make physical access to their games easier. So, you know, initially it was Xbox. There's an adaptive controller that's a special interface box that you can plug your switches, these buttons that you can use any part of your body with and any kind of special joystick. So it just gives, it enables a lot more people using a lot more devices to be able to play their games.

16:28And in general, the point about adaptive technologies, or rather technologies that enable the world to adapt, and the user at the center of things. We often, people say the user experience in general is, start with the user, devise the experience. It sounds like that's exactly what you do. Exactly. It's a bit like being a tailor. If you imagine, and you can't, for people with more complex disabilities, is if it's less severe, then there are things on the shelves. And we have training material, training videos that we put out there so that a lot of people are going to be able to learn what they could buy and what they could get and how to solve their problems without us being involved.

17:04The more complex cases, you do need specialists. And I'm lucky enough, my background is in education. We've got specialist occupational therapists, specialist speech and language therapists, and we offer a lifelong service as well to those people. So we start them off by doing an assessment with that team. We find out what game they want to play. We find out which parts of the body are the most effective and safest to use because we don't want them to get RSI in any part of their body. So it's highly specialized. And then what we do is we find the right equipment, and then, as I say, we offer a lifelong service because the kind of special technology, the assistive technology, that will change and develop.

17:43New games will come out with different versions of them, and their condition will change. We work with people, for example, who have something like cerebral palsy, so they're a long life ahead and physically they will change. Sometimes they'll get stronger and the muscular movements, bigger and longer and more powerful. Sometimes it might be a progressive condition. That's a condition like motor neurone disease, muscular dystrophy, spinal muscular atrophy, where they might change for another reason. But basically, I'm going to rename you. No, no, no. Not to stop you, rename you. Dr. Mick the Iterator.

18:20I mean, that's essentially, he's the Iterator-in-Chief, and he's my business shaper today, founder of Special Effect, a charity helping people with severe physical disabilities access and enjoy video games, and so much more. The team that comes up with this, people often talk about innovation and what's the secret. What is the secret, Mick, for you? And how have you managed to have these little breakthroughs is it simply as i mentioned the iteration and the playing and the try this try that or is there something a bit more methodical than that it's a case of of realizing that there's a need and looking around and seeing if we can fill it or if someone asks us you know to collaborate with them on on making something more accessible whether it be a games developer to make their actual game more accessible to more players or whether it's someone i mean we help logitech for example when they saw the adaptive controller come out and that you could plug all these switches etc in they then involved us and others in developing a switch kit and what they call adaptive switch kit so how many people are in this team is it because i again i hate big committees of people trying to solve problems yeah i'm hoping you're going to say elliot it's a small number of us and then we try lots of things exactly is that correct yeah yeah and it's like Basically, my whole idea was to have a small ship.

19:41If you imagine, with me at the tiller, well, hopefully, anyway. The rest of the team wouldn't agree. But it's to see an opportunity. And then if you've got, you know, even if the team are worked off their feet, which actually we're getting busier all the time, then if there's a great opportunity comes up that could be transforming, could use the skills and the experience that we've got to actually create something that will change the world, if you like, or have a global impact, then that is something that's worth doing. And are you still a really good spotter of what's going to be transformative?

20:16Do you know, hold on, don't do that, that's the one. Not me. I rely on my, well, discussion with my colleagues. And one of my sons, Bill, he runs the R &D department, our R &D department, and he's the man who decides, you know, whether or not something is a good investment of our time. And how does he know? because of lots and lots of experience of his own. And he's a specialist in design as well. So he's the person who very much comes up with the ideas, like, for example, as well as leading the collaboration with Xbox and Sony and Liberator and helping EA to make FC 2025 more accessible, etc.

20:55As well as that, he's also able to be creative with our own resources that we produce. And what we learn, basically, we've got a specialist team. If somebody's really complex and they live in this country, we can actually visit them, assess them, or work with them online and tailor-make the system that they want. If it's somebody beyond that or someone with a less complex disability, he's the one who's behind the training resources that we make available. And I've actually got, sorry, I knocked the microphone, but yeah, we've actually got, we had a look online at who's doing what. But out of 195 countries in the world, over 130 of them are actually looking at our training resources, you know, these training videos.

21:35So there's people all over the world who are benefiting from what we know. But with regards to what we do, Bill is the person behind that. And one of the things that he's come up with is something called Eye Gaze Games. We realize there's a big gap, you know, for people who can only use gaze control because you can't fully access the complex games. no matter what kind of physical interface you've got, switches or whatever. But he realized, hang on a minute, let's have a suite of games that aren't too complex but are going to be challenging for people, you know, children and adults. And we've got versions of, you know, four in a row, we've got chess, as well as some new games as well.

22:11But all eye control. All eye control as well as other forms of control as well. You know, so in other words, eye control and whether it's switches, joystick, head movement, whatever. It's basically, it's all going on with Dr. Mick Tomachin. There's no stopping it. This team just go, they make up as they go along because the human condition changes and they adapt. And how brilliant is that? Stay with me for my final chat today with Dr. McDonagan. And we have some hot eight brass band for you too. What a treat. That's all coming up in just a moment. Don't go anywhere. Jazz Shapers on Jazz FM. In partnership with Mishkondorea.

22:45It's business, but it's personal. Dr. McDonagan, founder of Special Effect, my business, Shaper, just for a few more minutes. And apart from improving the human condition, a small thing that you do with your team, obviously, look, what would you ideally, in the ideal world, what happens in terms of money and in awareness? What would you love to see going on in the next five years so that you can bring even more of your amazing technology to people that need it? Yeah, that's a really good question. Really, as we were saying, there are about 30 of us who are managing just to be able to meet the growing need.

23:20I mean, in the work that we do in intensive care, for example, mainly with people using gaze tracking, for those people, strokes, spinal injuries, whether it be a car crash, etc., our team will actually go out in person and help people in intensive care. So that's a very, very labor intensive and then following them from then onwards, as I say, for the rest of their life. And takes time. It takes time. Everything goes in slow motion in intensive care. Absolutely. And obviously the equipment that we loan, we don't ask for it back for those people in intensive care. And you're talking about gaze tracking computers quite often, you know, lifelong loan.

23:57That is not cheap. How much is a piece of kit like that? A piece of kit like that, you're talking about somewhere in the region of around 5 ,000 for that. And then there's obviously the time that takes the support. But basically, we are managing at the moment by charging around doing our best. The number of hospitals, we started off with one hospital, obviously. That was the one that Rob was at. But now, year on year, there are more hospitals throughout the UK who are asking for help, mainly England and Wales. But there are 40 hospitals out there who are getting in touch with us now. If they have someone in intensive care, it's difficult to communicate, for example.

24:33We will go out there and do our best. Because physically, the hospital are doing wonders, obviously, with helping the person physically and helping them to recover, etc. But what we find is that psychologically they're plummeting, that those individuals are plummeting. They're unable to have any control, unable to speak, no control over their lives. So what we do is we find a way for them to be able to communicate. We find a way to be able to engage. Maybe Netflix they might want, WhatsApp, et cetera, you know, emails, et cetera. Whatever it is. Reading a book, whatever it is that they want to do, we customize that setup for them.