Wednesday 4 December 2013, 14:18 | By

Creating a special effect with assistive technology

CSL Invites

It’s coming to that time of year when our letterboxes and email inboxes get packed with Christmas cards. This festive season, I’m looking forward to receiving one card in particular, because this time last year I received this ecard (pictured below) designed and created – pixel by pixel – by a young man called Joe who is living with Muscular Dystrophy.

Christmas Card

Although Joe’s condition means he can’t move his hands and use a computer, with assistive technology provided by my organisation SpecialEffect, Joe was able to use his eyes to control his computer and create this picture. In his Christmas card, Joe wrote: “Thank you for getting me back on the computer – I’ve now got my independence”. Just a few words, but they made my year!

Finding a way to create and play
Having worked with young people with serious physical disabilities and life limiting illnesses for many years as a teacher and an ‘assistive technology’ specialist, I’ve seen so much creative potential, but it’s often stifled and inaccessible. It’s as if the disability or illness puts a glass ceiling between what these young people can achieve and what they could achieve.  My life is spent bridging that gap through assistive technology.

While great strides have been made over the years in producing technology to help disabled young people to write and communicate – employing  the kind of device that Stephen Hawking uses – there is still a severe shortage of assistive technology that enables them to play and express themselves through design and music.

Parents often ask me questions about their child’s social time: “What can my child do when he gets home from school and at the weekends? He can’t draw, paint or play an instrument. How can he release his pent-up creative ability? How can he make friends if he can’t play with them?” It sounds obvious, but play and friendship is so important for children and I felt compelled to use my skills to help create play tools for these young people, so in 2007 I founded a charity, SpecialEffect, which develops specialised technology to enhance access to videogames and creative self-expression for people living with serious disabilities.

There are many types of special devices that can be used to help people with disabilities to break through that social and creative glass ceiling. For me, one of the most exciting and liberating developments in this field has been ‘gaze control’. This is a system involving the use of a high quality camera which, combined with a low-level infra-red light source, can enable the user to control their PC just by looking at it.

Alex sculpts without lifting a finger
Alex, who has Spinal Muscular Atrophy, could no longer control a computer using a keyboard and mouse, and voice control was becoming increasingly difficult too. He does have good eye movement though, so he tried using ‘gaze control’, a system that is able to pick up the movement of the eye. This enabled Alex to control the mouse pointer in just the same way as if he’d been using his hand.

As a result, he’s been able to play a wide range of videogames (‘Football Manager’ is a favourite), get involved with social media, and he’s even used gaze control to virtually ‘sculpt’ a creature from his own imagination and print it out using a 3D printer – without needing to lift a finger. And to top it all off Alex has now enrolled in an online training course that could lead to a career in the videogames industry. It just goes to show what can be achieved with a little bit of motivation, an active imagination and some enabling technology. See Alex’s sculpture and read a blog from Ian Spero, founder of Creative Skills for Life, on Huffington Post.

James and Katie’s ‘Duet for eyes’
Another exciting example of eye gaze as a creative tool is a project involving James and Katie, both of whom have cerebral palsy and have great difficulty controlling their hand and body movements. The challenge was to enable them to play a leading part in a live performance at the Science Gallery in Dublin, despite the fact neither of them could play a musical instrument in the traditional sense. The solution we came up with is an eyegaze system aligned to a grid of musical sounds selected by James and Katie in advance. In this way they were able to play whichever sound they wanted, simply by looking at the screen to select it. The result was a remarkable, improvised duet with Irish band Kila.

Disability – In the eyes of the beholder
I could tell you about many more life changing interventions, but I would rather talk about what could be, if only we had the means. The team at SpecialEffect is driven by a passion to utilise whatever technology is available, to reduce the gap between potential and performance.

One way of looking at disability is to regard it as the extent to which a disabled person’s environment (including physical environment, medical and physical care and assistive technology) falls short in meeting their needs and optimising their abilities. If so, as the opportunities offered by computer technology increase year-on-year, it could be said that an individual could, in effect, become more disabled if they are denied access to it.

Take gaming. When videogames began back in the 60s, it was a very specialised and ‘niche’ market. But the NDP Group estimate that, now, 62% of the US and up to 70% of the world’s population play videogames. The vast majority of these games are social, enabling people to engage with others all over the world. Many are also highly creative and educational, with top-selling games like ‘Minecraft’ enhancing social, programming and design skills in an engaging, collaborative and completely immersive environment.

And the question is, why should disabled people miss out? It was for such reasons that I founded ‘SpecialEffect’. Since the UK registered charity started in 2007, the number of severely disabled people referred to us has increased year-on-year and we are currently providing ongoing support to approximately 200 young people in the UK and beyond. The vast majority of these people are too severely disabled to travel. Many of them are in hospital.

As a result, long journeys by car, train or plane are a common part of our specialist Assessment & Support team’s lives. Many of those we support have had a traumatic injury or illness. Many have a progressive condition. For this reason, we provide regular visits and support, on an ongoing basis. The number of referrals from hospitals, hospices, and care homes in particular, is increasing rapidly, as more and more professionals and parents realise the positive impact of this technology at a time when it is needed most.

Believe it or not, we receive no statutory funding and our service is provided free of charge to those who need us. The equipment we use and frequently loan out is expensive and very labour intensive and we’re also obliged to invest significant time and resource in fundraising. Fortunately, it’s no exaggeration to say that the SpecialEffect support team is utterly remarkable. Each member is completely and passionately committed to the cause, with their batteries re-charged every day as they see the impact of their work in transforming the lives of those people who need it most.

If you are interested in making a difference, Special Effect is organizing ‘GameBlast’ – a 24-hour UK wide gaming marathon which is all about having fun and levelling the playing field for people with disabilities. We’re looking for 100 teams of between two and four friends, family members or work colleagues to raise vital funds for us by playing video games for 24 hours during the weekend of 21-23 February 2014.

Fancy playing along? Click here for more info.

Dr Mick Donegan is founder of SpecialEffect, which uses specialised technology to enhance access to videogames and creative self-expression for people with a wide range of disabilities.