Mark Saville on how SpecialEffect 'levels the playing field' for people with physical disabilities

No man is an island,
entire of itself;
every man is a piece of the continent,
a part of the main.

John Donne

However for some children, this may not often feel the case. Children with physical disabilities may face limitations in their interactions with peers (Stevens et al, 1996). Reduced access to participation is often not only due to differences in functional skills, but may also be due to limitations imposed by the physical and social environment (Law et al, 2007).

SpecialEffect is a charity which looks to address this issue when it comes to participation in gaming. Mark Saville, who acts as communication support for the team, was kind enough to offer his time for an interview, so I could find out more about the charity's work.

Levelling the playing field

Mark set out the aim of SpecialEffect: 'To help people of all ages with physical disabilities enjoy videogames. To play video games on a level playing field with everyone else. So, for those with a physical disability to join in with their family and friends as effectively as possible.'

I was curious about the origin of this service. Mark told me about SpecialEffect's founder and CEO, Dr Mick Donegan (an Associate Senior Research Fellow at SMARTlab, University College, Dublin, and Adjunct Professor in the Department of Assistive Design at OCAD University, Ontario), who ten years ago was working for another charity in which he was helping severely disabled children with their communication.

'The parents would come and say their children can communicate at school, but what happens when they leave? What quality of life do they have on the weekends on evenings? This was a time when video games were on the rise. Games provided a perfect platform for people with disabilities to join in.'

Mark returned to the concept of levelling the playing field. 'I think we are looking at children who don't have the ability to run around and play like other children do. And, you know, the online version of football – FIFA, for example – comes along and they can't play that either. They are missing out twice with their friends.

The aim of the charity is to at least pull back one of those and make it possible. And by doing that, the impact is incredible. The inclusion, the raising of quality of life, is just astonishing.'

The way SpecialEffect 'pulls back' is by modifying the hardware required to play computers games, in order to increase their accessibility. I was fortunate enough to trial some of their technology at Rezzed, a gaming convention in London, and was able to see the different modifications to gaming controllers which help people with disabilities engage with games.

However, the question remained whether it would allow somebody with a physical disability to play on the aforementioned 'level playing field'.

Mark acknowledged that there are a lot of variables influencing whether the charity is able to help somebody. 'For example, a parent or a child might come to us, and the young person is saying 'Look, I have muscular dystrophy and I have weakness in my fingers but I really want to play Call of Duty.' And so we say 'Okay, we will go along and look at your specific abilities even down to the millimetre of movement you have and we will see whether there is some way, be it through joysticks, switches or eye gaze, and we will try and find some way for you to play Call of Duty.' So that is the primary aim. And that is what I mean by levelling the playing field. We will do our utmost to make that happen.'

Mark recognises that sometimes it is a case of managing expectations. 'Especially sometimes we find we are working with people who may have a condition which may be advancing. We will try to keep them playing as long as we can but we may have to progress to other games as time goes on.'

Practicalities

He also highlighted the difficulties in the practicalities in creating bespoke controllers for video games. 'Making a general controller for accessibility for all games isn't possible, even within a particular disability. If you look at cerebral palsy for example, every single person has different difficulties: their muscle spasm might mean they spasm inwards or outwards. There are various levels. It is therefore impossible to create a generic controller and say, 'there you go.''

This means that each controller made via SpecialEffect is customised for the child requesting it. This is, as Mark puts it, 'the one-to-one approach.' This in turn requires a multidisciplinary team being involved, such as technologists and occupational therapists going out to visit people. 'They are amazing to watch,' Mark said, 'to see them working with people to produce something custom.

It could be something as simple as an adapted one-handed joystick for some people who may have a problem with one hand. If it is somebody with a spinal injury, we might be thinking of a chin joystick combined with a voice control in combination with a couple of head switches on the head rest.

There is a huge range of technology which includes pulse switches and eye blink switches. So we are kind of mixing and matching and creating. Sometimes we have to pull a controller apart and put holes into it and modify it in a way which makes it easier for somebody. It really is horses for courses.'

Mark described the benefit the work has had not only for the children involved, but also for the carers as well. 'The impact we are finding is not just obviously fun: we are finding that especially with people with severe disabilities, if we enable them to gain three or four hours in a stretch, we are giving a lot of respite time to their carers.

We are also giving those people a chance to be anonymous online and interact at the same level with the people they are playing. They may well be beating people online and those people have no idea this person has got a disability. It is a big thing.'

This impact is seen through the positive feedback the charity receives. 'I was talking to a parent the other day, a parent we had helped, who said, 'Thank you, as a father, for making me feel so much better that my daughter is enjoying herself.' And it had never struck me, before.'

These accessibility modifications can also have a role in physical rehabilitation. 'We may find an occupational therapist is referring someone who needs some kind of hand exercises, and for us, operating a joystick to play a game is a good repetitive hand exercise for a young child. It is a win-win. We are finding new positive impacts every day. But mainly it is still about inclusion.'

Looking to the future

Discussion turned to the future of SpecialEffect. 'First and foremost, we want to still be doing what we are doing now because the nature of disability is never going to change. There is always going to be a huge range of disabilities displaying in different ways and we will always need to produce custom controls. But what we are also doing is working with game developers as well, to look at ways in which they want to make their games more accessible to people. 10 years, who knows? But I can assure you we will still be helping people.'

The referral pathway for SpecialEffect is completely open. Anybody with a physical disability or their parents/carers can contact the team directly (a contact form is available). 'We don't charge,' said Mark, 'because we are dealing with young people and families who are facing enough pressures financially, or otherwise. The last thing we want to do is say 'Would you like to play games? I'm sorry that is going to cost you a few hundred pounds.''

To me, the charity seems a worthwhile cause, increasing social inclusion within an often overlooked group in society. In most fields of psychiatry, in particular in liaison and CAMHS, we often see individuals with physical disabilities which may limit their ability to engage in what is viewed as 'normal' activity among their peers.

This increases their sense of isolation and distress as they feel more disconnected from those around them. This loneliness is associated with increase rates of depression and suicidal feelings (Schinka et al, 2012), while strong social networks play important protective roles against depression (Santini et al, 2015).

With The Pew Internet Study (Lenhart et al, 2008) previously recognising that video games are becoming an almost universal pastime in society and that they are part of normal social engagement, reducing the barriers for people with disabilities to engage may be beneficial not only for their social interaction, but their mental health as well.

SpecialEffect is a registered UK-based charity. Coverage of this charity on this blog does not constitute its endorsement or recommendation by the College.

Authored by Sin Fai Lam

References

Law M, Petrenchik T, King G, et al (2007) Perceived environmental barriers to recreational, community, and school participation for children and youth with physical disabilities. Archives of Physical Medicine and Rehabilitation, 88: 1636–1642. [abstract]

Lenhart A, Kahne J, Middaugh E, et al. (2008) Teens, Video Games and Civics. Pew Internet & American Life Project. [website]

Santini Z, Koyanagi A, Tyrovolas S, et al (2015) The association between social relationships and depression: a systematic review. Journal of Affective Disorders, 175: 53–65. [abstract]

Schinka K, Van Dulmen M, Bossarte R, et al (2012) Association between loneliness and suicidality during middle childhood and adolescence: longitudinal effects and the role of demographic characteristics. The Journal of Psychology, 146: 105–118. [abstract]

Stevens S, Steele C, Jutai J, et al (1996) Adolescents with physical disabilities: some psychosocial aspects of health. Journal of Adolescent Health, 19: 157–164. [abstract]