SpecialEffect, charity, video games, Arlo, PC

Interview: SpecialEffect

Last week we announced our contribution to the wonderful cause that is SpecialEffect: participation in their upcoming GameBlast event. Mark Saville has kindly answered our questions about their amazing work.

Kim says…

If you haven’t yet heard of SpecialEffect, they’re a charity dedicated to using technology to enhance the quality of life of people with all kinds of needs, including stroke and road traffic accident patients, individuals with life-limiting conditions and injured soldiers returning from overseas. They are the only UK organisation devoted to helping everyone, whatever their disability, enjoy video games and leisure technology, kickstarting their rehabilitation, self-esteem and inclusion.

When the charity recently announced their GameBlast event, a twenty-four-hour gaming marathon we jumped at the chance to be a part of it. And after roping in our good friend Ben, team Gamely Giving was born! Our aim is to game through the day and night on 22 February 2014 whilst raising as much money for SpecialEffect as possible – and hopefully we’ll be able to give you guys a few laughs along the way too. Thank you to Mark for answering our questions.

SpecialEffect aims to put fun and inclusion back into the lives of people with disabilities by helping them to play video games. Can you tell us about the charity’s goals?

Mark:   “The big picture is that we’re helping everyone, whatever their disability, to be able to benefit from playing games. On a day-to-day basis that entails doing whatever it takes to get people playing to the best of their abilities. Our aim is to use a variety of technologies to achieve this, but we don’t sell anything ourselves, and we don’t charge for our help.”

How long has SpecialEffect been running and how was the organisation founded?

Mark:   “SpecialEffect has been around since 2007. Our founder and CEO, Dr Mick Donegan, had spent many years helping very severely disabled people with little or no speech to communicate independently, but he was constantly frustrated that their quality of life was so low. He was giving them the gift of communication, only to find that they had very little to talk about. He also found that disabled people of all ages were desperate to play games – not only to have fun, but to interact and be included with their family and friends. Although they were never going to be able to play a real game of football, for example, he realised that by using technology he could help them play the computer-based version. Astonishingly, there’s no other organisation helping disabled people on an intensive individual basis to benefit from games, so he founded SpecialEffect.”

Your website mentions that you complete assessments and maintain a Loan Library, as well as host award-winning roadshows – you’re obviously very busy and dedicated! Can you describe a typical day for the charity?

Mark:   “Wow. Um, there’s no typical day really. The best way I can answer that is providing a snapshot of what’s going on at the moment. We’ve got ten people based here at SpecialEffect Towers and having everyone around at the same time very rarely happens. Our priority is always our clients so Dr Mick, our CEO, is over in Venice at the moment with a big bag of tech kit helping a couple of very severely disabled people to communicate and play games. Bill and Gill are in a Belfast hospital helping a lad who’s had a spinal injury beat off depression by giving him access to the games he loves, and Gav’s modifying some equipment to send off to another lad in Stoke as a loan. I can also hear our fundraiser cursing as he struggles to package up an electric guitar that we’re selling on eBay. By the looks of it I wouldn’t want him gift wrapping my Christmas presents in M&S. As for myself, I’m munching on a mince pie while typing this. #keyboardcrumbs”

Support provided by SpecialEffect is always tailored to abilities rather than conditions. How much work goes into developing a solution for a particular person?

Mark:   “Whatever it takes. Dr Mick uses this line in his presentations about everyone we see being a project of one, and he’s not wrong. A lot of the people we see have degenerative conditions like Muscular Dystrophy, where all the body’s muscles weaken over time. So on an initial visit we might be able to get them back in the game with some foot switches or a chin joystick, but as their condition advances, we’ll go back again and again to alter the setup. There’s some amazing tech out there, and our job is to join the dots by connecting a person’s abilities with the tech, often in combinations – voice commands, muscle twitch switches and eye control, for example. We’ve even been looking into brain control as a future option, and we’re following developments closely.

“We’ve got a couple of wonderful specialist occupational therapists in the team who are vital to getting things right. Among other things they make sure that a person is sitting safely and comfortably, and that any assistive tech they’re using is mounted correctly. They’re tech-savvy, but they’re also brilliant at coming up with low tech great solutions. I took a look in one of their kit bags the other day and saw an assortment of weird stuff including garden twine, table tennis balls, blu-tac and, rather disconcertingly, a tube of tile grout. I’m assured it’s all useful.”

What has been the most memorable moment during your time with the charity?

Mark:   “Can I have two? The first is the scene at the end of this video of Arlo which ALWAYS makes me well up (I’m not the only one here) and the first time I saw it I was a wreck. The second is the efforts of a ten year-old called Mina, who saw what we were doing and did a sponsored scoot between Bournemouth and Boscombe piers. She gave it absolutely everything she had, and it was the lovely thought of ‘Well, I can’t raise much, but I’ll do whatever I can.’ That’s not to devalue any of the other brilliant things that other people have done to raise money for us either – we’re constantly humbled and amazed at the support we get and feel really guilty that we can’t thank everyone personally.”

SpecialEffect has been working with eye-gaze since 2007, a technology that makes it possible to control a computer simply by looking at it. What effect has this had on the lives of those who can’t use a PC effectively in other ways?

Mark:   “It’s actually been around for over twenty years, but in recent years the technology has improved to the point that it’s almost a general-use access method. For people with Locked-in Syndrome, Motor Neurone Disease and high spinal injuries it’s sometimes the only way that they gain independence and, in some cases, communication. OK, here’s a scenario that happens all too regularly: you’ve had a serious accident and wake up in hospital unable to speak or move any part of your body apart from your eyes. Imagine how frightening that must be, on top of not being able to ask or answer any questions. We’ve set up a project called Stargaze that helps in that situation. The hospital calls us and we come in with an eye-gaze computer that has an artificial voice that you can control with your eyes. It gives you a voice when you need it most.

“We use eye-gaze for a lot more than that though. Apart from being able to control some games, it can be used to operate nearly all aspects of a standard computer. We’ve met disabled people who run businesses just using eye-gaze.

“It’s not a magic wand, though. Getting eye-gaze to work effectively takes a lot of time and patience. And, until recently, a lot of money – but we’re hoping that’s all about to change.”

Back in October, Double Fine founder Tim Schafer backed the charity in their crowdfunding drive to raise £5,950 for the Playing With Your Eyes project. Can you tell us a bit about this project and how Tim came to be involved?

Mark:   “Tim saw our video of Chloe and Ella playing Once Upon a Monster and became interested in our work! It was great to have such high profile support for the crowd funding drive, which successfully raised enough money for us to by a high-end eye-gaze system that we can loan out to people with disabilities.”

We’re taking part in Gameblast next February to help raise funds for SpecialEffect. For those who haven’t yet heard about it, can you tell us about the event?

Mark:   “It’s our first UK-wide twenty-four-hour gaming marathon that anyone can join in! It’s all about having fun doing what you love best, and levelling the playing field for people with disabilities at the same time. Over forty teams have signed up so far, and we’re hoping that more teams of friends, family members or work colleagues can raise vital funds for us by playing whatever video games they like for up to twenty-four hours – and get sponsored for doing it – during the weekend of 21-23 February 2014. More details here.”

If readers are unable to participate in GameBlast but still want to get involved, in what other ways can they help?

Mark:   “Loads of ways! There’s already been some wonderful people who’ve done wonderful things themselves like cutting off their hair, abseiling off hospitals, pole-dancing marathons, all sorts of fun stuff. Just call us as we’d love to help make it happen. And each year we put a big team in for the British 10k in July – that’s always a scream. And THE big event for petrolheads is our £500 car rally in May that takes in Brands Hatch and Le Mans. I can’t reveal too many extras, but believe me it’s going to be a seriously good weekend that’s going to be seriously good value for money, either as an group of friends or a team-builder for a company.”

How can readers find out more about SpecialEffect and your work?

Mark:   “It’s all at www.specialeffect.org.uk, but for a quick shot just have a look at any of the videos of the amazing people we help. They’re on our YouTube channel at http://www.youtube.com/user/GameOnForEVERYONE.”

We all know how much we enjoy playing video games, so what better than to support a charity that wants to help see everyone be a part of that fun? Stay tuned for our next article on our ‘fundraising milestone challenges’. We don’t want to give away too much right now, but let’s just say that if we manage to raise a certain amount Phil will be forced to overcome his squid phobias!

In the meantime, head over to the SpecialEffect website to find out about their fantastic work and help us spread the word about Gamely Giving. Thank you!

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