Disrupting disability and making a wish come true

On Friday night I was invited to a fundraising dinner for Reverse Rett, which supports research into finding a cure for Rett Syndrome, a debilitating neurological disorder. Rett Syndrome is not inherited; it is a spontaneous chromosomal mutation which prevents nerve cells in the brain from working properly, causing profound physical and communication disabilities. Research so far indicates the possibility of reversing the mutation and its effects.

My friends have two daughters and the youngest, Amy, suffers from Rett syndrome. She is only seven and she cannot walk or talk. She is permanently confined to a wheelchair. A couple of years ago her sister Abby (who is able bodied and very pretty and chatty) did a sponsored silence. She wrote on her fundraising page that she wished her sister could talk so that they could chat together.

Tobii PCEye GoThe Reverse Rett fundraiser included an auction and a raffle. I bought some raffle tickets and I won the big prize: a piece of eye-gaze  technology – Tobii PCEye Go – which will allow Amy to communicate with the outside world, and chat to her sister.

As you may or may not know, professionally I write a lot about technology and communication, so it is pretty cool that the combination of a sophisticated device kindly donated by Tobii and my bit of luck will turn Abby’s wish into reality. The PCEye Go works with a laptop,  but it also works with a Windows 8 tablet and has a wheelchair attachment for mobile communication.

Once Amy has got to grips with the PCEye Go, the plan is to get her a Surface Pro or other compatible Windows 8 tablet  This would allow her to communicate when she’s not at home or at school and would bring her life a lot closer to normal.

A mobile communication device will mean a lot more to Amy than our smartphones mean to us as for the first time it will give here the ability to communicate quickly and directly with people around her. She will also be able send texts and play games. Basically, it will make it easier for her to socialise.

I wanted to share this because disruptive technology is a central theme for technology writers. It is so great that technology can also disrupt disability to transform the lives of Amy and others like her and help their bright minds and personalities shine through their physical limitations. And it will help two little sisters chat together at last.

http://www.reverserett.org.uk/

Andrew Marr’s six rules of leadership

IMG_3509A friend invited me to Steria UK’s Great Minds dinner at Simpsons on the Strand. It was an interesting and enjoyable evening, not least because the after dinner speaker was political commentator Andrew Marr. I knew Andrew from my days as a reporter in the House of Commons. He was editor of The Independent, and we often sat next to each other in the press gallery in the optimistic early days of Tony Blair’s New Labour government. It was great to meet Andrew again 17 years later. The time gap disappeared instantly; we fell straight into conversation – about politics, of course – and he was as forthright and insightful as ever.

Andrew gave us a short talk about politics, which included six rules of leadership. Although these are derived from 30 years of observing and commentating on political leadership, they apply equally to business – or anything really. Still a reporter at heart, I jotted them down:

  1. Know what you are for. Margaret Thatcher made mistakes, but she knew what she stood for. While David Cameron is effective at running his office and getting things done, he is uncertain about what he stands for, which is why people don’t believe in him.
  2. Make enemies – at all costs! Tony Blair at one point tried to be friends with The Guardian and The Telegraph. He wanted everyone to like him. He pretended to agree with everyone, but journalists talk among themselves, and in the end nobody agreed with him. If you’re not prepared to offend some people, you will take your business nowhere. David Cameron has promised to negotiate with the EU concerning the free movement of people – a concept which is fundamental to the EU. He won’t manage it. He has to decide whether he really wants to take the UK out of Europe.
  3. Speak English! This means making sure that people understand what you mean. While John Prescott’s grammar was at best incomprehensible, we all knew what he was saying. Ed Milliband apparently has better people skills than David Cameron, but he is intensely unpopular because he avoids answering questions. This is a common trait among politicians, and it is also how they lose people’s trust.
  4. Keep people cheerful! Boris Johnson is underestimated because he plays the buffoon, but his ability to make people laugh underpins his popularity and his success. Andrew recalls watching him deliberately messing up his hair before Question Time! Nigel Farage has garnered immense support because he is likeable, even though in Andrew’s opinion (and mine) he is not a political leader because he has only one idea. Alex Salmond is another single-issue politician who has shifted public opinion (in Scotland) significantly. They keep people cheerful and that engages people and keeps their attention. Andrew asked: “Is UKIP popular because of Nigel Farage’s pint?”
  5. Practice selective deafness. This means not letting critics – or twitter trolls – affect you. John Major was famously upset by criticism and this only encouraged his detractors. This references back to points 2 and 3. If you are a genuine leader, you will know what you stand for and be able to communicate this, but this means not everyone will agree with you or like you.
  6. Get out quick! Margaret Thatcher always vowed to get out quick, but ultimately she stayed too long and faced a public humiliating demise. Tony Blair, on the other hand,  quit at the top. Many politicians are remembered for their leadership skills because they left quietly and their glory years were not dimmed by years of public failure.

Andrew’s closing words were a warning – that businesses and individuals have to get involved in politics beyond making trivial criticisms on social media and elsewhere. If we are unhappy with politicians, or the government, we should replace them. The danger is that we shall face the extreme political and economic consequences of doing nothing.

Thanks are due to Steria UK.

Reporting from the future! The UK’s first Legal IT interview via Google Glass

On 12th March I attended the South West Legal IT Forum meeting, which included a presentation on Google Glass by Jet Basrawi, a technologist at DigitasLBi & Google Glass Explorer. I was reporting the event for the Law Society Gazette – I write their IT column – and for Legal IT Today, the magazine that I edit. What I didn’t expect was Jet to have two Google Glass devices and to offer me the chance of doing the UK’s first legal IT interview to be filmed entirely on Glass – I filmed Jet and Jet filmed me. It was an impromptu interview and this short video includes footage from both devices.
We are planning a longer, more structured interview with an external camera filming us both. Meanwhile, here is what in many ways was my best-ever moment as a technology writer. I felt like I was a reporter from the future – or playing a journalist in a sci-fi movie.

Thanks to Jet Basrawi for providing the devices and making it happen, Duncan Eadie for inviting me to the South West Legal IT Forum meeting at Foot Anstey’s offices in Bristol, Sam Mardon for video editing and George Wilson for the music.

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