When Stephen Jones kicked that final penalty in the grand slam game between Wales and Ireland last month I must have been one of the only Irishmen alive who had a conflict of interest when he missed. As the ball was spinning in the air with me screaming internally for him to miss, my welsh son Osian was watching the same ball on the other side of the Irish Sea hoping against hope that it would go over. Thankfully Jones did miss the kick and I was delighted. Needless to say Osian, along with the rest of Wales was deeply disappointed but a few minutes after the final whistle, in an incredibly magnanimous gesture, he told me that he was delighted for Ireland because they were the better team. Had Jones got the kick I would not have been so generous. I would probably have sulked even with my wonderful son....
The knowledge that I would acted like this has troubled me for the last few weeks but life has a funny way of coming ‘around’.....
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The project with Stuart Mangan is up and running. Over the last few weeks since Garway rd led me into Stuart’s life all kinds of positive developments have taken place. Stuart has acquired a new powerful computer that is well able to cope with the voice recognition demands that he needs and it has been configured so that it can be controlled from anywhere in the world (with Stuarts permission!) should something need to be fixed or re-configured. A few simple observations and interventions helped improve the speech recognition accuracy and this gave him great encouragement. Through sheer determination and discipline Stuart began to practice diligently and this made for more improvements in the speech recognition which encouraged him more. Remarkably, because of all the practice, Stuart’s voice began to improve, so much so that he needs to re-train his system about once a month. The improvement in his voice has been nothing short of a miracle.
These days Stuart is writing complex emails including links, unusual words, colloquialisms and references all voice controlled and is doing so at a pace that would rival somebody typing. It has transformed his ability to communicate and is a great example of how technology properly used can play a profound role in improving a person’s life.
Another simple intervention was to connect his phone by Bluetooth to his computer and to use a client so that he could receive and send text messages via his PC, again, all under voice control. Being able to send text messages to his friends and family without anybody helping him has given him a big lift. We take these simple things for granted when we can move our fingers.
The computer that we specified for him has a built in webcam and together with a Skype client Stuart can now video conference his friends and family at no cost. Again we take this capability for granted but the fact that Stuart can see and interact with people not physically near him has a profound impact on his well-being.
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Osian, like any typical 13 year old, loves to collect autographs. Over the last couple of months he has been diligently tracking down the names and home addresses of celebrities and writing hand written notes to them, including a picture of themselves along with a stamp addressed envelope addressed to him, asking them to sign the photograph and to post it back!
I am staggered at the number of people he has succeeded in convincing to do this! His view of it is very simple. Make the process easy and the autographs will roll in. Apparently there is some competition in school between himself and his friends about who can gather the most autographs.
One of the things I miss most about the two of us living in different countries is not being able to go to sports events together so that I could help him improve his autograph quota....
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The Computer Clubhouse in the Liberties area in Dublin is still going strong. It was setup a few years ago on the old Media Lab Europe Campus as a way of connecting the activity of the lab to the local community in an area that is considered very disadvantaged. Essentially it is a state of the art technology centre where young people can learn about technology in a safe and constructive way. The young people, through the help of expert volunteer mentors, learn how to edit videos, make music, design web pages and even design and make their own video games. In time they grow in confidence in the use of the technology and by extension grow in confidence in themselves. This is a fundamental step in helping them take positive control over their lives.
About 5 years ago shortly after the Club house opened a young lad called Reg (also aged 13) joined. It was clear that he needed help. He was very quiet and although quit capable was seen by others as an easy target for bullying and so his self esteem was extremely low. He took to the activities in the Clubhouse like a duck to water and over the years everyone involved in the Club-house has been keeping an eye on him and supporting him in his endeavours.
On one occasion, shortly after his grandmother died, a person he was extremely close to, he felt comfortable enough to come down to the Club House and shed a few tears as part of his grieving process. It is rare for somebody this young and male to be comfortable demonstrating grief publically.
He built a up a great relationship with one mentor who also happened to be a volunteer with Camara and so Reg began to spend huge amounts of time in the Camara workshop learning how to fix computers.
It was all going extremely well till last year. Reg suddenly started getting into trouble in the Club House. He began to be disruptive and rowdy and then uncontrollable. It was discovered that he was stealing bicycles and had got mixed up in bad company who goaded him into doing reckless things which he kept getting into trouble for. He started developing some very unhealthy drinking habits and eventually had to be barred from the Club House. He was then accused of stealing a mobile phone in Camara and was barred from there to. His behaviour started going from bad to worse and eventually he was assigned a Juvenile Liaison Officer that he had to report to each week. It was discovered that he was on a final warning – any more offences and he would do some time in prison.
When something like this happens it really tests your resolve. Reg had been really heading in the right direction and when you see a success story like this it gives you the energy to keep going and face the challenges and many failures in this kind of work. When it unravels to this extent it can make you despair.
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A couple of years ago when I was working in Media Lab Europe I met a young man who had cerebral palsy from birth. He is even more limited in terms of communication than Stuart. His only connection to the world is via a single switch on his neck that he controls with his chin. It is effectively a binary interface to the world – the same mechanism albeit in a different form to that used by Jean Dominique Bauby to write the book ‘The Diving Bell and the Butterfly’.
He saw me using a crude version of the texting system that Stuart now uses on his PC. He asked me could I implement it for him.
At the time (around 2002) Bluetooth was not very reliable and lots of phones did not have it enabled. Even if it was on your phone you had to re-start the system regularly to get it to work. These were the genuine reasons that I never implemented it for him. I have some excuse for that but over the last few years Bluetooth has become stable and I must ashamedly confess that I forgot to tell my friend.
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About a week ago I lost my phone in the Liberties area. I had been in the Computer Clubhouse for an important event where we were presenting the work of the clubhouse to a potential partner that could help us with the long-term future of the initiative. It had been a chaotic day and I was rushing around changing in and out of a suit (to accommodate my stubborn insistence on cycling everywhere) and I mislaid the phone.
For me, it is a wonderful example of the way an educational initiative could be inclusive particularly with the technological tools that are available and affordable to us nowadays. It is a project very close to my heart but deep down part of me had my doubts about whether the phone would ever be handed in.
So I became absolutely convinced that it had been stolen and hence I blocked the sim card and for good measure I blocked the phone as well.
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It was a Tuesday night sometime last year and I was driving back to the Clubhouse from Arbour Hill prison. Once or twice a week I play football in Arbour hill with a few volunteers against the inmates in a simple gesture of human solidarity between those either side of the prison walls.
I wanted to break up the drive back to Greystones because I was wrecked so I decided I would drop into the Clubhouse before going home.
Just as I was about to arrive at the Clubhouse I spotted Reg on Thomas St. I stopped the car and asked him how he was. He seemed in good form. At this point I broke every child protection rule written and asked him did he fancy going for a drive (for those of you that do social work please forgive this indiscretion!). I drive a very red Octavia VRS 180 BHP car with a very striking set of alloy rims and most young male teenagers love it (it is a legacy from my mid life crisis that occasionally has its uses). Reg agreed to go for a drive as long as we got back for ‘Prison Break’ which was on at 9.00pm!
It was a good conversation starting point. Reg was meeting weekly with the Juvenile Liaison officer and genuinely was one more indiscretion from doing some time in prison. I told him that I had come from Arbour hill and gave him my standard story that the inmates tell me regularly – they wished they had never left school and they wished they had never drank alcohol.
These two points really are universal themes that emerge in any conversation with the inmates in the prison.
However Reg was having none of it and refused to engage in the conversation.
I drove up to the hellfire club and we watched the sun go down over the city. He really enjoyed the view but the conversation was still very superficial. I had pretty much given up on making any progress with him in terms of trying to work out what was going on.
I took a different route back to the Liberties and ended up passing by a graveyard just outside of Rathfarnham. Reg asked me to stop which I did. He took out his mobile phone and opened up the gallery.
‘My Gran is buried in there...’ he said pointing at the graveyard. Then he showed me his phone.
Every week since his Grandmother had died, Reg had cycled up to her grave and tidied it up. He took a photograph at every visit and had a full catalogue of all the pictures on his phone. He told me that he found it very peaceful to sit there for an hour and busy himself making the grave look clean and well tended.
‘You miss her don’t you’ I said trying to give him a door to venting his grief.
And so he did. Tears welled up in his eyes. Over the next few minutes he explained that he wanted to do a multi-media project around the gravestone pictures but felt that people would think it was stupid and uncool. The poor young man had clearly no-one to share his grief with. It was truly heart breaking. His grandmother was somebody he deeply loved.
I told him that his grandmother would be so proud of what he was doing and so he should be proud of himself.
Who knows if this was the right thing to say but it suffices to say that we came to a deal. If Reg returned to the clubhouse and behaved himself for a couple of months I would give him some driving lessons in my car.
We shook hands on the deal and got back to the Liberties in time for him to see Prison Break.
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My friend with Cerebral Palsy and I have stayed in touch. Every now and again late in the evening we engage in a little instant messaging slagging normally around some sporting event. James is an avid Liverpool supporter and I am Manchester United so there is a lot for me to tease him over! By its nature instant messaging has to be short and sweet and everyone is constrained in the same way. It is a marvellous technological communication platform that my friend can participate in fully. Incidentally, instant messaging was invented in the MIT media lab.
A couple of days ago we were talking about technological advances and he mentioned to me again his desire to be able to text friends without intervention from his carers. Because I had implemented a PC controlled text system for Stuart, it was a simple process to help him set the system up for himself. It is now up and running and he is delighted.
Stuart has been the catalyst for this connection and intervention happening. In a strange kind of way his drive and energy is spreading giving people a voice who have no voice at all.
And look at the incredible role technology is playing. Without technology these communication paradigm shifts for people with disability would be pipe dreams.
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Last week I got my phone back. It had been found in the Clubhouse and one of the team rang me to tell me the good news. I felt so damn guilty. In all the years since the clubhouse has been open nothing has ever been stolen. On the basis of my prejudices I deserve to be the first victim!
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Osian is coming over to Ireland next week for a couple of days. We are both really looking forward to it. It coincides with the Clubhouse Annual Showcase where the members get to show an invited audience what they have been up to over the last year. Osian really loves the Clubhouse. One of his favourite hobbies is to make his own movies which he publishes on Youtube. He learned his first film making skills in the Clubhouse a couple of years ago. Imagine the film industry we would have if the Clubhouse could be mainstreamed!
Reg is back in school studying for his leaving certificate this year. By all accounts he is back on the right track. He is back in the Clubhouse regularly and seems to have settled down again. His driving lessons have yet to happen – when the leaving cert is over we will close the deal and head to the hills (about as far away from any civilisation as possible – under closely adhered to child protection policy of course!).
I really believe that the Clubhouse through the volunteers and the marvellous informal approach to learning has been an important support in Regs life (it was not just the conversation we had together – his time in the clubhouse facilitated that happening. In the Clubhouse he is surrounded by wonderful people who care for his wellbeing). Projects like this that enable disparate sections of our society to mix and mingle are the way forward in our diverse and multi-cultural world. They need to be supported and sustained.
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A couple of weeks ago I was asked to attend a fund-raising event for Stuart in Cork. The guest of honour was none other than Declan Kidney the Irish Rugby team manager. Many of the Irish team, particularly the Munster contingent given that the event was in Cork, were also in attendance.
At the end of the event I had the privilege to talk to Declan himself thanks mainly to the fact that Stuarts family introduced me to him on the basis that I was helping Stuart with the speech recognition on his computer. I explained to Declan the conflict of interest I had concerning our marvellous grand slam victory. I also happened to have a rugby ball with me....
Declan signed the ball with a special message for Osian as did all the Irish team players present. It is a precious gift to myself and my son.
And it is all thanks to the marvelous good will that Stuart is cultivating. If I was not involved in the project I would never have met Declan Kidney.
And the beauty of it all is that it is an absolute honour to be a small part of this marvelous example of the human spirit prevailing.
When Osian arrives next week I will present him with the signed rugby ball as a small token of consolation to Wales losing the grand slam game. I have no doubt he will be chuffed and his autograph quota will go up a notch or two....
The rugby ball is oval of course, not quite a circle (as I am sure there are more stories to come) but hopefully in the stories above you get the points – something Stephen Jones did not succeed in doing.....YIPPEE!
GMcD 20/5/09
