It was a busy day - a Friday. I was resting on the couch when I felt like checking my email from phone I saw a message titled "Affordable and easy to use communication technologies for people with MJD". I was delighted to know that it was a reply for a message I sent to MJD Foundation couple of months ago. Surely 'a surpirse treat' - enough to cool me down after the brisk walk from the uni. MJD foundation is the main body to facilitate Machado-Joseph Disease (MJD) affected people in Groote Eylandt. It is a non-profit organization which facilitates events across multiple areas such as research, education, equipment, advocacy and services. Research funded by this foundation is classified into curative (finding a cure for MJD) and QoL (improving lifestyle of MJD sufferers). This particular email was from an Occupational Therapist (OT) working closely with MJD foundation to aid MJD affected indigenous people in number of areas including Groote Eylandt. So, I replied her to arrange a Skype conversation to discuss about my project and her ideas.
I have started the discussion with an introduction to my project. She seemed to be excited about it and asked me how she can help. So, firstly I asked her about the requirements of the MJD affected people with regard to communication technologies. She gave a brief introduction about MJD without any medical jargon. Although I have already read most of the things she said (see My 1st Blog Post) it helped me to refresh my memory and of course to understand the diverse effects of MJD on people. She mentioned that these effects can be ranging from slight difficulties in walking to complete dysfunction of hands, legs and upper body. So, there are people with MJD who can still walk and those who are locked into wheelchairs. She noted that it will be important to focus on a specific group of people who suffer with similar physical limitations. Then, developing technologies for that particular group will be easy as we can focus more on their affordances.
An important aspect she mentioned is that MJD affected people in Groote are highly interested in using tablet computers - especially iPad. They are very keen to play simple games like bubble game on their iPads. Using games to engage the disabled people effectively in communication is one of the highlights from the earlier discussions as well. She stated that typing words using touch pad is sometimes difficult as people tend to drag their fingers across the screen. She said that they use Proloquo2Go software application which uses number of symbols, to communicate messages with a help of a text-to-speech engine. However, this application is quite expensive (~230 AUD) and it might be possible to develop a similar application for a much less or no price!
|Main Interface of Proloquo2Go Software Application|
I told her about the idea of using cushions as buttons to control a media player on an iPad. She said although there can be difficulties in neck motions, it might be an interesting avenue to research. They are yet to ascertain the ability of the MJD affected people to move head to control devices. However, this might be an appealing interface especially for people who are severely affected by MJD and have lost their limb movement capabilities.
It was interesting to know that people at Groote are fond of social networking sites like Facebook and online streaming sites like YouTube. This is a sign that the disabled people require something enjoyable and exiting to get involved in communication activities. The OT said that these activities are very useful to avoid these people been isolated from the others. I was glad to hear that there is an iPad initiative running in Groote which provides people with both physical and technical resources. Although they have a good 3G network coverage in the area it incurs a cost for usage.
So, it seemed that there are number of opportunities to provide the MJD affected people with more effective communication technologies. It is clear that although there are some difficulties, they have sufficient resources to adapt a new technology. Maintaining strong connections with OTs and other key people and authorities will be the cornerstone of developing technologies that can sustain for a long time period. Our OT said that she will convey about my research to the community at Groote and also possibly get back to me with some photographs of people using technical devices. When I have ended the Skype chat I realized that how important it is to understand the context when doing research that concerns humans!