Category Archives: Disability

The Lab: virtual worlds and support for Asperger’s

This story originally appeared over at The Metaverse Journal.

Over the past few months or I’ve followed the efforts of Dale Linegar and Stefan Schutt in establishing what is now known as The Lab. Dedicated to providing support and skills to 10-16 year olds with Asperger’s Syndrome, The Lab is already showing some great results. It’s one of those initiatives that deserves much more kudos and funding than it is currently receiving. You’ll understand why after reading the interview I conducted with the Lab’s co-founders.

David: First, a little about The Lab team. Can you give a snapshot of your backgrounds?

Stefan: For the last seven years I’ve been an educator and researcher at Victoria University, working with technology and young people and teaching multimedia. Before this I worked in the Internet industry during and after the dot com boom as a content editor, producer, web developer and interaction designer. I also set up Australia’s first Computer Clubhouse, a tech skills club for underprivileged kids in Fitzroy based on the model established by the MIT Media Lab in Boston. Before all this, I worked as a writer and played in bands.

Dale: I started working with Stefan at Victoria University (VU) in 2007, teaching in Creative Industries. He had a lot of faith in the virtual worlds work I was doing then, and we have collaborated on at least half a dozen projects together since. We work well together, our skills complement each other. I run a business called Oztron, which does work for VU, Monash School of Pharmacy, and a range of other clients – most involving research and education in virtual worlds.

David: So what specifically has let you to working in this area?

Stefan: We had taught multimedia students with Asperger’s at VU and they seemed to particularly enjoy working with technology, especially the virtual worlds activities Dale was running. This led to a trial with two teenagers in Gippsland funded by Optus Communities. The results were promising and from this we applied to VicHealth for a one-on-one research project to pilot different kinds of technologies with young people with disabilities and other disadvantages. This project found that one-on-one technical tutoring seemed to work particularly well with kids with Asperger’s, and this led to the setting up of The Lab.

Dale: I think after that there were a few factors involved with us deciding to give this a go. We had established through those projects that this approach could work, and that there was a need for it. Once you reach this stage you can either publish and hope that somebody will eventually read what you write and take action, or you can give it a go yourself. The amount of money involved wasn’t huge so we decided to do it ourselves. At this time I was also meeting one young boy with Asperger’s and his mother for regular mentoring at McDonalds, we initally started at the library but were told we were making too much noise. This wasn’t ideal, and it required a lot of travel time to deal with one person.

All of this coincided with my business needing a physical location to work on a few larger contracts. This has provided us with the space, the technology and the human resources required to run The Lab.

David: For those not in the know, how prevalent is Asperger’s amongst the teen population?

Stefan: For Autism Spectrum Disorders (ASD) in general (which includes Asperger’s Syndrome), estimates for Victoria ranged in 2006 from 27 per 10 000 to 54 per 10 000. The prevalence appears to be increasing rapidly and there is debate about whether this is due to increased rates of diagnosis or increasing numbers of people with ASD.

David: Onto The Lab: it’s only just really started in earnest, what’s the journey been like to get to this stage?

Dale: Fascinating and rewarding. It’s a simple idea but when you see the immediate impact it has on both the children and their parents it’s incredibly satisfying. The process actually started with myself and Stefan walking around Footscray knocking on doors asking about vacant office and retail spaces. After a few hours we had found a suitable space, and once it becomes real like that, it takes on a life of its own. It took around 5 months from that day until we opened the doors for kids.

Some simple tasks have turned out to be a nightmare, like getting connected to the internet, and other things which initially seemed complex, like getting somebody who could work with the parents on board, involving our technology mentors, and attracting the right young people, have worked out better than we dared imagine. The physical space The Lab is in is also Oztron’s office, and it has been designed to encourage collaboration. The kids are very comfortable there – it feels more like some kind of gaming den than an office or school.

Stefan’s role at Victoria University and our previous project work means that we have a wide support network, and we have drawn on that throughout the process for advice and support in the many areas we lack knowledge in.

David: So who is funding The Lab at present and is the funding relatively secure?

Stefan: The Lab is currently unfunded, or more accurately, indirectly funded through the virtual world software development projects Dale runs for a range of organisations, as well as small amounts of left over funding from previous VU projects. Funding may be forthcoming later in the year via a Cooperative Research Centre in youth, technology and wellbeing run by the Inspire Foundation that we’re part of – but this is yet to be fully discussed with the CRC. Until then, we’re looking for other funding sources.

David: What is the scope of activities The Lab is involved in?

Dale: We currently run one session a week for 3 hours for 8 kids, and more sessions during holidays for a wider audience. What we try to do is provide as many different technology platforms as possible for the young people, which they can use to explore their own interests. Our aim is not to lead the students, but to support them and encourage collaboration. We provide students with a laptop stand, keyboard, mouse, second monitor, and network connection. We have a local server which is currently running Minecraft and allows filesharing – the kids can also log into this and play together from home. Once the kids come in it’s a case of – ‘What do you want to do?’

One of the hit pieces of software so far has been Minecraft, and this has ended up serving as a social and creative outlet for the kids. For young people who need to learn about social interaction, this has been great, they need to co-operate and respect each others’ territory. Last week we introduced an Arduino, an open-source electronic hardware and software kit comprising of a circuit board that can be programmed to do specific things, starting with simple things like making flashing lights and musical instruments and going up to projects like complex sensor-based triggering and robots with avoidance detection. The Arduino proved to be very popular, and we have now ordered a few more kits. It’s a great way to introduce kids to programming because the payoff is immediate and satisfying.

We also have a separate room where Stefan and Trish (our parent co-ordinator) hold an informal gathering for the parents each week. This gives both the kids and parents a bit of personal space. They can chat about issues they are having over a cup of tea, and discuss possible avenues of support. Trish has just organised for a psychologist to attend every fortnight, and we also have other experts with an interest in the field dropping by to offer assistance.

David: You use OpenSim, Spore and Minecraft to name three virtual environments. Let’s talk OpenSim first: has it primarily been a cost issue that’s led to its use versus say Second Life, or has there been other advantages to OpenSim?

Dale: As a business we use Opensim for nearly all of our work at the moment including Pharmatopia for Monash and a construction world for Victoria University. Second Life doesn’t provide a space where where we have total control, and people of all ages can interact, so as educators we were forced to make the switch a couple of years ago now. Like many people out there I personally have a love/hate relationship with Second Life – I love the possibilities it has created, but I have issues with the way it has been managed and promoted.

David: So what exactly are you doing in OpenSim?

Dale: We haven’t really introduced it to the wider group at The Lab because we are waiting for that opportunity to present itself, it’s up to the kids. We will run our own Opensim world which will be available to the group only – the plan is to create 8 islands and the rest is up to them. Many of the young people with Asperger’s we have worked with over the past couple of years continue to use Second Life. One young lady is using Second Life to bring her characters to life. She has written an amazing story about a group of female superheroes, and drawn pictures, and is now using the virtual world to bring her characters into the third dimension.

Another young man we work with has his dream house in Second Life and is constantly renovating, he lives in rural Victoria so for him it’s a great escape. We have also used Comic Life quite a bit in the past and will probably introduce this to interested Lab participants at some stage.

David: A common criticism of OpenSim (and Second Life) is the initial learning curve: has that been a greater or lesser issue with the teens you’ve been working with?

Stefan: Yes and no. What surprised us in our last project is how much Second Life and OpenSim rely on text-based navigation. We’d always thought of them as visual interfaces until then, but as we found out when working with kids with very low literacy levels, so much of the navigation is achieved by typing in text, which can cause issues for some kids. For others, they’ve taken to it like ducks to water, especially the younger ones. We also wonder whether the ‘learning curve’ referred to is related only to the ‘end user’ or also the people running the activity (ie teachers and managers) – this is where a lot of the problems seem to arise in terms of access, web speeds, and associated lag, plus generational issues like people not used to navigating in 3d or navigating via arrow keys like, erm, me. I always get Dale to do the practical demos because I’m so unskilled at it!

David: Now onto Spore: how are you using it?

Dale: We only use the free creature creator, firstly because it’s free, and secondly because it’s all about being creative. It’s a great icebreaker, many of the young kids we work with have already played it, and it acts as a catalyst for communication. It also gets kids into a more creative frame of mind, to feel the pleasure of making something as opposed to getting stuck competing in other games.

David: And Minecraft?

Dale: It can appear to an outsider as one of those ‘click-click-click’ games but when the kids are playing on a server together it allow for some wonderful creativity and encourages communication and collaboration. One of our mentors has built his own computer in it and knows it backwards, and the kids respect this.

David: Has Minecraft been a bit of a revelation for the work you are doing? It sort of came out of nowhere and has caught on quickly.

Dale: It has been surprising how many of the kids enjoy it, I think every one of them has played it at some stage now, and there are regularly 5 or 6 of the kids on the server during our sessions. There is a lot to learn, so I see it as the group exploring a new territory together – in this case a virtual one. They feed off each other and go on journeys, learning things they might not learn alone.

David: Talking more broadly again now, what are the individual benefits and outcomes you’ve seen so far amongst the participants?

Stefan: One big factor so far seems to be the environment of The Lab – i.e. a space where young people with Asperger’s are not picked on (unlike school, where bullying is constant), where they’re accepted and where being a ‘geek’ is even cool, and where they are surrounded by other people like them – both other kids and the programmers who are a kind of role model. Also, where their parents aren’t hovering the whole time! They’re relaxed because they’re not pushed to do anything, or to interact if they don’t want to. They can sit happily at the screen without being bugged – but the expert advice is on hand whenever they request it.

Having said that though, the level of kid-to-kid interaction to date has been quite amazing – here we’re talking about kids who don’t have any friends at all in the outside world, but who are happily chatting away and playing with others, both in-world and in the physical space.

Another factor is the technology itself, and the presence of experts to whom they can look up and respect (they usually run rings around other adults when it comes to IT). Tied to this is the sense of possible future careers, and a way into the future. This is very powerful – already we’ve heard reports of one parent halving her child’s anxiety medication dose due to his reduced anxiety levels about his future.

David: Let’s talk research: is there an underlying research methodology being used for The Lab?

Stefan: We would classify our approach as ‘participatory action research’ – our focus is on hands-on outcomes driven by all stakeholders in collaboration, and implemented (and continuously improved) by all involved. It’s based on making a real difference to real people’s lives rather than sitting back as the researchers in the white coats. It’s proudly interventionist and practical, and has a strong element of social activism.

David: Are there specific research projects underway and if so can you give a brief overview of any?

Dale: The Lab is it! We may choose to work with others in the future to measure outcomes empirically – especially researchers who are experts in ASD (which we’re not)

David: What are the measures of success for you with The Lab?

Stefan: In the short term, happier kids, happier families, and a sense of progress amongst participants. We rely heavily on feedback from the kids and the parents. It will always be tough to measure our impact in a quantitative way as each of these young kids is so unique and we are only dealing with small numbers. It’s not like we can create a control group. But we are looking to work with experts in the Autism field who may be able to measure the effects on individuals and their families over time – this is where the Cooperative Research Centre, and its 70 or so partner organisations, will hopefully come in.

David: Are there any qualitative or quantitative outcomes you’re able to see already?

Stefan: Yes. We’ve already had remarkable email and verbal feedback from participants’ parents about their children’s improvement, only three weeks into the beginning of the program. We also have 20 plus kids on our waiting list. Other parents have been ringing us daily after finding out about The Lab. It seems to have really hit a nerve. As stated previously, we’d like to get other measures too, working with field experts.

David: Given the central use of virtual environments in the program, are there any plans to expand the program geographically?

Stefan: Currently The Lab has three interlocking elements that work together: participant socialisation, technical tuition and parental networking/support. Any of those three elements would be useful in themselves (for instance, we’re arranging for a software engineer to undertake private volunteer programming tuition with one of the kids on our waiting list), but the combination of the three is especially powerful. So we could run virtual programs, and they could be useful, but some of those three elements might be missed.

Dale: My feeling is that having personal contact is still important in modern society, in this case for both the kids and their parents. We hope to build online resources which can help people at home, but nothing beats a one-to-one conversation with somebody who knows what they are talking about. I hope that we can inspire other real-world institutions to become involved.

David: Getting out the crystal ball: what are you hoping The Lab has achieved a year from now?

Stefan: What we are striving for is an effective model that can be replicated in other places and can positively influence the way society thinks about these kids, particularly in the education system which seems to be manifestly unsuited to a group of young people who are very talented.

Dale: Currently so many of the young people and their parents simply have nowhere to turn – they are stuck between normal schools and special schools, neither of which meet their needs. These people have a lot to offer to society – we deal with kids who can program their own games, but aren’t able to attend school and are at risk of being disadvantaged their entire lives. I hope that we can help support people and organisations who are interested in adopting this type of model, and I hope we can expand and deal with more kids more regularly. We live in an age where we have the opportunity to use technology to create
positive social change, and we are enjoying every moment of it.

Virtual worlds for the elderly and disabled

An Italian virtual worlds developer, ISN, has announced the roll-out of the Oasis Foundation Virtual World Project. Funded by a non-profit organisation in Italy devoted to assisting the elderly and disabled, the project aims to:

1. Act as communication and collaboration environment to inform, communicate and interact with the public in an innovative way.
2. Be a collaboration and activity platform for the disabled.

Some of the activities which will be held include:

1. Virtual Learning sessions on various topics in the Oasis Virtual University.
2. Conference and conventions in the various meeting areas of the virtual world.
3. Workshops for virtual goods production.
4. A virtual school for video production and machinima, connected to a real life TV.
5. Assistance and help sessions for families. Contact with a psychologist.
6. Exhibitions of different kinds.
7. Sessions and discussion on religious topics, cultural differences and lectures.

Second Life is the platform of choice for the project. None of the aims or activities are particularly new for anyone used to interacting in virtual environments. That said, the comprehensiveness of the project is impressive and I’ll be following this to see how the end product ends up.

Serious games: health games research, amputees and avatar perception

Over the past few weeks, there’s been a spike in mainstream media interest around virtual environments and health. I thought it’d be worth showcasing three notable stories / issues that you may not be aware of.

Amputee Support

A press release from ADL Company Inc. and Virtual Ability, Inc. touts the launch of a project to provide peer-support to those who have undergone amputation of a limb. The project’s impetus has come about due to some sobering US-based facts:

Recent US military casualty figures for Operation Iraqi Freedom and Operation Enduring Freedom indicate that between September 2001 and mid-January 2009 over a thousand amputation injuries occurred. Of the 935 amputations considered major, one in five wounded warriors lost more than one limb. While the rehabilitation goal is for the soldier to return to active duty, many reintegrate into their civilian communities. In either case, military amputations are often accompanied by additional wounds, depression, fear, phantom limb pain, and post traumatic stress disorder.

Spouses and family members often become the caregivers of military amputees after they are released from military hospitals and rehabilitation programs. Family support members have their own grieving process to go through related to the amputation and to the change to family life.

The platform for the project is the recently released Second Life Enterprise product, meaning that users have a greater deal of privacy to explore issues in a group context. You can also read about the project from the perspective of ADL Inc’s President, and regular virtual worlds writer, Doug Thompson (SL: Dusan Writer).

Avatars: Perceptions of Self

New Scientist has a good article on a study looking at brain activity (as measured by MRI) when discussing perceptions of real self versus a heavily played World of Warcraft character. The methodology:

To probe what brain activity might underlie people’s virtual behaviour, Caudle’s team convinced 15 World of Warcraft players in their twenties – 14 men and 1 woman – who play the game an average of 23 hours a week, to drag themselves away from their computers and spend some time having their brains scanned using functional MRI.

While in the scanner, Caudle asked them to rate how well various adjectives such as innocent, competent, jealous and intelligent described themselves, their avatars, their best friend in the real world and their World of Warcraft guild leader.

For the early results, read the article, but essentially things aren’t black and white about how we perceive ourselves versus our avatars. No big surprise there. One particularly interesting signpost for future research is the idea that those who perceive themselves and their avatars in a similar way may be the individuals at higher risk for addictive behaviours in regards to their use of virtual environments.

Health Games Research

Health Games Research is a website well worth perusing. It’s a US-based organisation devoted to “research to advance the innovation and effectiveness of digital games and game technologies intended to improve health”. There are yearly grants for research into games and health, with the 2009 funding round announced last week.

It’d be great to hear from anyone interested in conducting their own research into the area, as I have an interest in undertaking some research myself and would love to discuss potential collaborations.

Informed consent for medical procedures: the use of virtual environments

imperialcollege Dr Suzanne Conboy Hill is a Consultant Clinical Psychologist and a Visiting Research Fellow at the University of Brighton in the UK. She appeared on Radio National’s Future Tense program this morning, talking about her involvement in a virtual hospital project that I’ve mentioned here previously.

It’s an interview well worth listening to for the passion Dr Conboy Hill shows for the topic and her belief on the opportunities virtual worlds provide around informed consent for medical procedures by those with some form of mental impairment. It’s an area I hadn’t thought about much, but it makes sense that an immersive 3D environment would be an ideal medium to promote understanding of medical procedures in a non-threatening environment.

The key challenge at this stage is giving the level of access to provide those benefits in a more widespread way. Additionally, equipping current students of health sciences with the knowledge to navigate such environments is another challenge in an already crowded curriculum in most circumstances.

The same episode of Future Tense also has a short interview with me on the media hype cycle with virtual worlds, their role in education and the precedents likely to be set by the pending class action against Linden Lab on intellectual property grounds.

Virtual worlds and health: some media focus

The past couple of weeks have seen some interesting articles in the mainstream media on virtual environments and health.

The first is in the Jerusalem Post, showing the benefits for the vision impaired. You can view the full article here.

The second appears in Information Week and covers the use of Second Life by Chicago Children’s Memorial Hospital for disaster preparedness and the work done on Virtual Ability island.

I’m noticing a slow but steady trickle of mainstream news reporting on the opportunities of virtual environments and health. The challenge is to ensure there’s really solid evidence to back those claims when they receive more widespread scrutiny.

The View From My Wheelchair

Australian Second Life resident, Seshat Czeret, provides a guest post, which appeared on The Metaverse Journal in the past week. Thanks Seshat!

seshat2sml

There is always a lot of talk about ‘accessibility’, so-called ‘making things usable for the disabled’. You also hear a lot about phrases like ‘discrimination’, ‘equal opportunity’ and ‘political correctness’. It can be difficult to work out what is actually needed to help a disabled person live a fulfilling and useful life, and what is excessive ‘correctness’. Hearing what life is like for a disabled person can help.

I’m disabled. I use Second Life extensively. This is my story.

In the atomic world, the fleshworld, I’m almost totally housebound. I can only do chores – or SL work – for a short time before I have to rest. I only have a few hours a day in which I’m functional, and even for those I’m not fully functional. I haven’t been since I was a teenager. Some days – even some weeks or months – I have even less, or am not functional at all.

When I do go out, I have to use a mobility scooter or a wheelchair. I can walk, but walking the length of a mall would tire me out to the point where I’d need several hours of sleep to recover. For various reasons – which would probably be boring – even with the assistance of the scooter or the wheelchair, going out is very stressful and leaves me tired. I have to plan outings carefully.

So I can’t do atomic world work. By the time I got to work, I’d be too weak to achieve anything. I’ve tried, over and over again, many times in the last two decades. I’ve done it, but only at the cost of aggravating my problems.

Fortunately for me, I live in the 21st Century. I can do work from home! I’ve done voluntary work for the Open Source community. I’ve done other sorts of online voluntary work. I’ve written articles, and twice written a book. Unfortunately, the pace of work expected of an author of books exceeds what I can do – the first time I wrote a book, I was more than a year recovering.

But in Second Life, I can be useful.

In Second Life, I teach. I only have to be focussed for an hour and a half or so at a time, which is a stretch of time I can manage. And I don’t have to leave my house, exhausting myself, to do so. I can teach in text, with student questions also in text, so my hearing problems don’t matter. Much of the typing is done in advance, so I don’t overstrain my arms and hands, and only have to type the personalisation of the class for the individual students I’m teaching that day.

In Second Life, I am an NCI helper. I sit and listen in on the NCI chat/questions group channel. When there’s a problem I can help with, I can choose to respond – or not! If I’m having a high pain day, I let others catch that question. If I’ve responded to too many questions and need a break, I let others catch that question. If I can answer, however, I will.

In Second Life, I run a business. I don’t have to be there all the time, I can set things up and then go collapse into my bed. I can create things that other people like, in the times when I am functional, and rest when I’m not. I can do the business management stuff when I’m capable of it, not to someone else’s timeframe.

Best of all, in Second Life, my body works. I can run, and dance, and fly, and ‘talk’, and ‘hear’. I can attend art shows, or watch people creating art in sandboxes.

In Second Life, I am a person and not a disability.

Virtual Ability Island

Virtual Ability is an island in Second Life devoted to individuals with disabilities or chronic health conditions.

Initially funded by the USA’s National Library of Medicine, it now relies on individual contributions. It contains a number of discrete areas including training facilities for people with chronic health conditions. They even have their own orientation section which is well laid out and easy to follow.

You can contact Carolina Keats or Eme Capalini in-world for more information.

Check it out in-world.