15 percent of the world's population of 7.2 billion people are disabled. Many are highly intelligent and trapped inside bodies that have great difficulty in performing basic tasks. One of the most harrowing and frustrating things for them to cope with is the effort to communicate.
A UK based charity, SpecialEffect , is opening up communications for people with severe physical disabilities. They're doing this by helping individuals and global technology companies with assistive technology assessments, advice and global solutions. Pictured above, Michael Donegan visiting a hospital unit.Working with the disabled to provide access to gaming
Founder Dr Michael Donegan has over 40 years of experience in working with the disabled. He was Deputy Head of Wilson Stuart Special School in Birmingham and Deputy Director of the ACE Centre, Oxford. He is an Associate Senior Research Fellow at SMARTlab, University College, Dublin, and is Adjunct Professor in the Department of Assistive Design at OCAD University, Ontario.
Dr Donegan established SpecialEffect to 'level the playing field' by having a positive impact on creativity, play and control for people with physical disabilities through assistive technology.
EyeMine, is a free windows based software, developed by Dr Donegan's charity SpecialEffect. It uses eye gaze technology for people with severe physical disabilities to access Minecraft using their eyes.How access was provided to Minecraft
Minecraft is just one of the mainstream hardware and software applications for which SpecialEffect has provided access to for the benefit of people with complex physical difficulties wherever they might be.
The result to make technology companies' products accessible to people with disabilities and thereby opening up a path of communication.
Pictured below Becky Tyler using EyeMine.World leader in development and application of eye-gaze
Donegan is an acknowledged world leader in the development and application of eye-gaze technology, and has extensive experience in assistive technology for disabled people. He has been working within the area of eye-gaze and providing access to technology for people with complex disability since the 1990's.
SpecialEffect's focus is to modify, demonstrate, train, advise and adapt technology to suit the continued and changing needs of individual.ideaXme's interview with Dr Michael Donegan. Andrea Macdonald: [00:00:00] I am the founder of ideaXme.
Andrea Macdonald [00:00:04] Who are you?
Mick Donegan : [00:00:10] I am Mick Donegan. I am the founder and CEO of charity SpecialEffect. Our mission is to help people with severe physical disabilities to achieve the things that they like to do in terms of leisure and creativity. That is our primary goal. We have a team of technical specialists, therapists and fundraisers. We do our best to help as many people as we possibly can. That's me.Disabled people are a huge market for technology companies
Andrea Macdonald: [00:00:55] 15 per cent of the 7.2 Billion world population are classified as disabled. This large number of people represents a significant potential market for technology companies who can provide accessible products. You help two multi-million- or billion-dollar companies, Microsoft and Minecraft and you do it free of charge. What is your motivation for doing so?People are welcome to our intellectual property free of charge
Mike Donegan : [00:01:24] It may seem counter-intuitive. We obviously have non-disclosure agreements with the organisations with which we collaborate, but people are welcome to our intellectual property at no cost to them if they share our objectives to provide access. We are not 'possessive' about our intellectual property and do not want any 'percentage deals'.
[00:02:15] The main reason being, there is so much to do. People with disabilities, physical disabilities have such an urgent and pressing need. Any obstacle, whether it is charging for our services or intellectual property or any other agreements would be an obstacle to just getting on with what needs to be done.
[00:02:47] Another reason is, if we were to have any kind of commercial agreement where we have a percentage of sales, that could make people suspicious of our motives for recommending a game or a device. Whereas, if we charge nothing for our services, then people can be assured that we are independent.SpecialEffect's independent opinion
[00:03:18] Our independent opinion is our most precious possession. Anyone anywhere in the world can get in touch with us and ask . "What are the various merits of the different eye gaze systems?" Or any other questions regarding the technology that we use. We give them unbiased answers.
[00:03:36] We're in a privileged position. We can say "Right these are the merits of this system and these are the merits of that system. The choice is yours".
Mick Donegan : [00:04:08] I hope that makes sense. It might not make sense to businesses necessarily!SpecialEffect also develop their own technologies to service disabled people
Andrea Macdonald: [00:04:15] There are several areas in which you work. You visit the homes of disabled people to show them how to use the various systems and to learn what they need. You adapt existing technology, but you also develop your technologies. Could you take us through that?
Mick Donegan : [00:04:40] Yes. At the moment, you can't go to a store and say I've got this disability, at this stage, I want to play this game. The team has extensive knowledge of video games and assistive technology. Moreover, they have a great deal of experience with finding the most comfortable position, the most effective way of helping people to use technology.SpecialEffect's personalised service to individuals
[00:05:17] We work intensively with an individual. To find out as much about that person as we can, whether they are at home or in a hospital intensive care unit. We visit them where ever they are, anywhere in the UK. I was in Newcastle yesterday supporting a guy. Quite a long trip from Oxford.
[00:05:44] My colleagues were in Scotland last week. We will go anywhere in the UK to work specifically with an individual because okay you might be able to send something to them by post, but it won't be the right position necessarily, it won't be the optimal device to enable them to achieve what they want to.
[00:06:13] Our teams always include an occupational therapist who specialises in positioning the equipment and is knowledgeable about technology and video games. He or she knows how to position the equipment most effectively and safely for the person.
[00:06:31] Quite often we leave the equipment with them to try out. If the person with the disability needs modifications, we sort that out also.
[00:06:46] We have a technical specialist who helps with that. We do various modifications ourselves. It's important to remember that it is the optimal device for them at that time because everyone we work with will change. We adapt to the change in requirements. The technology and the kinds of games that they wish to play will change. New games will come out that they want to be able to play, so we'll help them to play those.We adapt to people's changing circumstances
[00:07:12] We work with people who have had traumatic injuries or illnesses, in intensive care with spinal injuries or paralysed on ventilators. Moreover, we work with people who are born with a condition like cerebral palsy. We help them as they grow up and change physically and the types of games that they want to play. It's a lifelong service.
[00:07:42] We also work with people who have progressive conditions, with conditions such as motor neurone disease and muscular dystrophy. It may well be that they become weaker over time. So, what they need to use to get the most out of technology at any given time will change. We are there, available, to help them at each stage until the end of their lives if they wish us to do.
[00:08:14] That's our approach. Our experience with individual people adds to the pool of our knowledge which we are happy to share.
[00:08:26] We have up to the minute knowledge of people with complex needs and the latest technology that can help support those needs and it's because of that knowledge that we are then able to be available to any company who wants to make their technology more accessible, to collaborate with them.The inclusive activity of playing video games
[00:09:54] I have learnt that access to video games is one of the most inclusive activities for people with disabilities. Often, we can provide the tools that enable a disabled person to compete on a level playing field with anyone in the world.
Andrea Macdonald: [00:09:54] The context for this is that the NHS now recognises gaming as an illness as “a disease” and likewise The World Health Organization have recently published their paper in recognising it as a disease as well so it's highly addictive. Tell us about Becky Tyler, whose experience has been very different. It's a good case history for proving that as far as the people with disabilities are concerned, gaming can set them free to engage with outside world in a way that might not be possible without it.
Mick Donegan : [00:10:52] Our role is to provide people with access to technology, who otherwise would find it very hard to access it.
[00:11:19] The extent to which people use it is up to them. The only feedback that we have had from the people we support is that it is life transforming in a positive way and allows them to play against brothers, sisters, friends and family whether they're online or not. One guy, Tom Clark, said "Thank you for giving me my life back" after we helped him. He hadn’t been able to play for 15 years.
[00:11:49] We helped him play until the end of his life. He wrote back to us within a week of our team setting him up and said that it was the first time he played FIFA against his brother in 15 years. He said “and I spanked him 6:1". We realised then that we'd succeeded.Eye gaze technology and working with Becky Tyler
[00:12:38] Back to Becky Tyler. She uses the kind of eye gaze technology that we and others have played a part in developing. It enables her to play games. She was one of many people who tested it and fed back to us which was helpful.
[00:12:58] Becky uses Minecraft to interact with friends. She built a beautiful theatre in her Minecraft world where she and her friends do performances on the stage. Becky also uses an art program and paints beautiful pictures. She plays The Sims which is all what a lot of other people her age at play.
[00:13:36] So this all gives her a reason to communicate with her friends. If she didn't have those experiences and she met with friends at school who can speak, it might be more challenging for them and Becky to find a context for communicating, sharing something.
[00:13:56] For her, it does so many things, and that is the reason why I originally started the charity. I recognised as a teacher, deputy head and in working with people like Becky that children like her are so smart. You can just see by looking at her eyes that she is intelligent. She's a very smart young person.
[00:15:27] Becky uses technology to its full extent. She also uses it for speech output. People like Becky are a positive example to people with disabilities across the world. They show other disabled people what is possible with technology.
Andrea Macdonald: [00:16:01] Where do you want to go next with SpecialEffect?SpecialEffects's collaboration with Xbox
Mick Donegan : [00:16:04] Well, it was great to collaborate with Xbox, Microsoft to create an adaptive controller which is a mainstream interface. They retail at a relatively low price. It helps those with disabilities plug their device into an Xbox. It is a hardware interface.
[00:16:29] Several other organisations, as well as ourselves, advised Xbox on how to create a device that was as helpful to as many people as possible to make at least make inroads into helping nearly a billion people with disabilities around the world.
[00:16:46] We have worked with many companies. We want to make ourselves available to work with more organisations. Our one to one intensive work and resulting experience allows us to offer developers around the world the opportunity to tap into that knowledge and produce technology for disabled people to access mainstream technology.
[00:17:14] I want to spread out what we're doing now and make ideas available. Just after the release of EyeMine, I saw Minecraft being accessed via EyeMine online by a guy with a progressive condition from Japan.
[00:17:42] That was one of the best days of my life. Brilliant.SpecialEffect's online games pilot
[00:17:59] We've also put a games pilot online. It is called Eye Gaze Games. It is a collection of games that are played using your eyes. We employ all kinds of technology. So far, it includes board games such as chess and draughts and sudoku and solitaire. In the future, we will also have driving, racing and action games.
[00:18:36] At the moment, someone can use Eye Gaze Games to either play with another player in the room using a touchscreen or he or she can play against the computer. The next stage will be to make those Eye Gaze Games which are in browser available for anyone in the world to play, via computer or mobile. Anyone in the world will be able to access the games, whether it is via gaze control, switch or a head mouse and play with another person. Their fellow player may not have a disability and could be on the train to work and use their mobile.
[00:20:15] Developers will be able to look at what we've created and with our advice make their applications accessible.
Andrea Macdonald: [00:20:15] So, what do you need to achieve all of your objectives? What help would you like from people? What do you want them to do?
Mick Donegan : [00:20:28] It's lovely that it is happening already. My idea was to do this as a team and to do work that resonates with people. That people would appreciate the difference that it could make very severely physically disabled people's lives. Moreover, then to want to support it. It is wonderful that this is happening. We are growing the charity nice and steadily. Furthermore, we help more people as we grow.
[00:21:07] Having said that, we are always short of resources. We're always slightly behind the curve of demand.
Andrea Macdonald: [00:21:14] That's what I mean. So, for example, does Microsoft contribute?Donate to SpecialEffect
Mick Donegan : [00:21:17] We give companies and individuals opportunities to support us. For example, we have an event coming up called One Special Day on 28 September 2018. That's the day when people and companies around the world, including developers who make video games or games hardware, can help us.
[00:22:19] Many already do so. Please visit our website on 28 September 2018 . Please visit our website for information about 28 September 2018 - 'One Special Day'. Whether you are a large organisation or an individual, there are many ways in which you can help us. Even if you play a game on the website on that day, it will help us.
Andrea Macdonald: [00:22:43] And if Bill Gates wants to take a look and send you a substantial donation you won’t turn that down?
Andrea Macdonald: [00:23:03] So what drives you to do what you do? You're an incredibly busy person.Motivation for founding SpecialEffect
Mick Donegan : [00:23:22] It started with my cousin. He had a learning disability. He had difficulty walking, motor control and speaking. Each time we met, he was desperate to say my name, Michael. I tried to teach him. It was due to this personal experience that I realised the gap between what many people want to achieve and what is possible for them to do unassisted. There is this a frustration, and I wanted to help with alleviating that.
[00:24:30] That's what started it all for me. I became a mainstream teacher. I then went into special education to work with people like my cousin. Later, I worked with people with severe physical disabilities and realised the vast difference between the two categories in terms of accessing technology.
[00:25:09] I have worked with people like Becky, who are very smart people. The best access point for them to technology at that time was a single switch which is great when it is appropriate for the individual concerned. However, there is a massive difference between pressing a switch and waiting for the letters to scan one by one until you can choose your word or phrase. Than just looking directly at the letter with gaze control to select it.Increasing people's potential to participate
[00:26:28] I am driven to use whatever technology is available to get every individual as close to their potential had they not had a disability. It is excellent for me to see Becky and people similar to her across the world showing other physically disabled people what is possible. Hopefully, more companies will realise what is possible also. Maybe Sony will see what Xbox has done in making a comparatively low-price device for these people and follow suit. In short, we are doing our best to spread the word and to show what can be done.
Andrea Macdonald: [00:27:46] Any plans to work with Fortnite?
Mick Donegan : [00:27:51] We are already. We are helping a small number of young people access the game. It is an incredibly popular game. So, yes, we can do so, but we don't have gaze control access to it yet.
[00:28:24] With many games we combine different access methods. For example, one guy we work with uses a combination of gaze control, speech and eyebrow movement to access Minecraft.
Mick Donegan : [00:29:33] Have you ever had a situation, a time in life when were incapacitated? Have you felt trapped because of a temporary physical inability to participate in what was going on around you?I used to wake up in the mornings and I couldn't move
Mick Donegan : [00:29:42] Not really. I have dreamt about it. When I was younger, I used to wake up in the mornings, and I couldn't move. I was awake but couldn't move my body, couldn't speak. I had to work quite hard to eventually force myself to move. Maybe this happens to others. I don't know.
[00:30:00] It is not necessarily the reason, but I am very passionate about doing what we can as an organisation for people with locked-in syndrome. I can't even begin to imagine how someone would feel if he or she can't communicate and make an impact on his or her environment. We're interested in brain interfaces which have massive potential in helping people like this communicate. At the moment, we're just dipping our toes in this area.
Andrea Macdonald: [00:32:38] Whom would you like to meet and what question would you like to ask that person?Whom would Dr Donegan like to meet?
Mick Donegan : [00:32:38] I'd like to meet Professor Louis-Alim Benabid. I have met him before, but I would like to meet him again to ask him about his work. I had not realised that he was the person behind an organisation called Clinatec based in Grenoble. The work that they are doing is incredibly exciting. They are working with full body exoskeletons which are activated using a brain implant so that people who are entirely paralysed can move, supported and upright, using thought.Clinatec's work
[00:33:17] This work is unique in my experience. The work is in the early stages because they've had to go through all kinds of ethical issues. I was privileged to see how far Professor Benabid and his team have got. A young guy had had the implant inserted into his brain and was beginning to learn how to use it to activate the exoskeleton.
[00:35:08] So, my simple question, when I see him in person again would be "What are you doing a year on?". His work is very exciting. I hope to receive an answer to that question soon.
Mick Donegan : [00:35:27] I have a huge amount of respect for people like Professor Benabid, who have this idea, an obsession and are determined to make it happen.Philosophy in life
Andrea Macdonald: [00:35:39] What's your philosophy in life?
Mick Donegan : [00:35:42] Oh that's a good question! I guess it's simple. To help as many people as I can. To make more people happy than I make unhappy. If at the end of my life, on the ledger, more people have benefited from knowing me than not, I will settle for that. It's no deeper than that.
Andrea Macdonald: [00:36:16] That's lovely. Mick Donegan founder of SpecialEffect. Thank you for your time. It's been an absolute pleasure.
Credits: Interview, conducted, written and researched by Andrea Macdonald, founder ideaXme Ltd.
Edited by ideaXme Ltd.
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