Albinism Life

Albinism Life Issue 22 - Autumn 2012 Paralympic News Also in this issue: v Event Roundup v New Technology v Life in Malawi Editorial by Andrew Bennett Ireland Conference Our guest writer is Andrew The Paralympic spectacle also The Albinism Fellowship held their first ever Albinism Ireland Mini-Conference Bennett; journalist, P.R. consultant captured the imagination of in September. It was a great success, 200 people attended and many thanks and father of Jessica (aged five) broadcasters, with BBC News must go to Rosie Dempsey and Treasa O’Callaghan for all their hard work. and Rebecca (aged two) both living correspondent Damon Rose Thanks must also go to the Sensory Engagement Project, RNIB Northern with albinism – and proud of it! commenting: “Some 2.7 million Ireland and the Community Foundation for Ireland who generously supported tickets were sold for the Paralympic the event.Thanks go to all the RNIB and NCBI staff and volunteers who made Now the Paralympics is over, there’s Games and the amount of media this event possible. Thanks to Patricia, Roisin, Danny, Joanne, Kirsty and Paula been plenty of time to reflect. Many and television coverage was who helped or exhibited on the day. Thanks also to those who helped to make of us must be wondering – what will unprecedented….After winning the the day possible with database or promotion work; Ciara, Thomas, Joe and be the long-term legacy of London final track gold medal of the Games Marian Lewis who arranged and funded transport for several people travelling 2012? Or, will there be one? in the Olympic Stadium on Saturday to the conference from the North-West. It’s a safe bet most of us in the night, South African ‘bladerunner’ Albinism Fellowship, including me, Oscar Pistorius said he hoped the The conference included a talk about the basics of albinism as well as discussion thought it was a fantastic event. I’ve success of London 2012 would boost based panel-led sessions and an exhibition and a crèche for the children. been looking at media coverage to the profile of parasport.” Rosaleen Dempsey, Albinism Fellowship Trustee and Contact Person for gauge whether the dedication of Following the games, sadly, it’s been Northern Ireland said, “This was an exciting opportunity to raise the profile of those athletes has changed attitudes back down to earth, with a Guardian albinism in both Northern Ireland and the Republic of Ireland and to let people towards people with disabilities. column about forthcoming cuts to living here learn more about the support and services available to them.” It helped that the games were disability benefits saying: “Just weeks Sarah Chamney, Registrar in the Ophthalmology Department of the Royal screened on TV (Channel 4); while ago, we were crowing over our Victoria Hospital, Belfast, previewed her research studies that have yet to be BBC coverage as with the Olympics Paralympians and discussing a new- published. This was followed by a parent and pre-school panel discussion. would have been better, I can’t found appreciation of disability. Panellists were parents of children with albinism or parents with albinism. recall previous Paralympics getting “But always lurking were the looming Joan Curran, an Educational Psychologist working in the Republic of Ireland that kind of billing from a major cuts and a hardening of the public gave a talk on educational assessment for children with low vision associated broadcaster. mood (towards people with disabilities with albinism. Her talk included useful tips for parents of children at both primary Nor does such widespread, receiving benefit).” and secondary school and the Powerpoint she created for this is available on overwhelmingly positive, media So while we perhaps took a few steps our website. coverage come to mind from past forward, attitudes still have some way A ‘Living with Albinism’ panel was made up of adults with albinism involved in events. to go. Paralympic sport, music, higher education and campaigning. Disability rights seemed to have a • Contact Andrew via Twitter: @ The exhibition area hosted services for both Northern Ireland and the Republic potent champion when a Daily Mail bennettwords or via his website, of Ireland. Among these services were RNIB Northern Ireland, The National online editorial in August said: bennettwords.biz Council for the Blind of Ireland, specialist schools for children with sight loss, “The powerful and rather moving parent support organisations and assistive and adaptive technology companies. message of the Paralympic Games is that disabled people do not wish to be either patronised or discriminated against. We obviously still have some distance to go before these two aims are fully attained.” The Mail was critical of ‘a special, costly 0844 phone line’ to book seats, which it called ‘betrayal of a noble spirit’. 2 3 London Barbecue Five Shires On a perfect June day for people with A glorious autumn day welcomed the Five Shires event to Moreton-in-Marsh. albinism (i.e. not too much sun!) we This was the first of our events advertised and subscribed to via Groupspaces had many of the usual crowd and and we are pleased to say that the event was well attended with over 30 some new additions to our usual adults and children. summer-time gathering. As usual the This was a chance for families to meet and share information. Everything children enjoyed the facilities. There from sunglasses and sunblock to educational matters. Many thanks to was lots of informal chatting and Sarah’s mum for providing entertainment for the children so the adults had sharing as well as a short circle time. time to talk - all those years in education were invaluable! There was a short presentation on Sarah and Jack’s experiences of the school system from primary to GCSE’s, offering their thoughts on how they had overcome some of the challenges. A lively discussion followed. Parents reported back they enjoyed this section and found the debate useful. You can download the presentation from our website (PDF). Many thanks to everyone who took the time to attend the Five Shires event and contribute to a really successful day. Do you have an interesting story? We are always looking for stories, tips, advice and opinions that would be worthy of sharing with others in the albinism community. Everyone has got something, they just don’t realise it and we can all learn something from each other. If you are not good with words we can help you write it, or write it for you entirely if you wish. Not sure? Drop us a line or two or leave a message on the phone line and we will get back to you. Male and female, young and old, your editors await! 4 5 The Knott - Paralympic Experience by Adam & David aged 18 & 15 had seen short piece on the BBC about door” moment. how Paralympics GB were looking for potential future Paralympians. Their We took up a training schedule of aim was to ensure that, as the home six days a week, and if we could nation, we would be able to have persuade Mum or Dad to provide lifts, competitive teams in all events, even would even on some occasions get a if this meant building a new team from couple of training sessions in on some scratch. The only criteria for attending days! Our training has consisted of the Talent Assessment Day was that gym training, particularly strength you had to be “tall, sporting” and of and conditioning and technical game course “have a disability”. While I, training. We have also been very Adam, was only 15 at the time, I did fortunate to have support not only enjoy paying junior rugby and VI from our parents, but also our school, cricket. Fortunately at 6’ 4” I was also Thornden in Chandler’s Ford, and tall! I tried out for blind football, and my now college, Peter Symonds in despite also being asked back for blind Winchester, who have also allowed judo, I waited with hope for a call-back the GB Goalball squad to train in their from Goalball which despite being sports hall free of charge. some months later, duly came. And as they say, from that moment on my While the training has been hard, The David Bowie anthem rang out In the lead up to the Games our story life changed. My Dad tells me there is and the commitment to the game has as Paralympics GB walked into the had been fairly well documented. a film called “Sliding doors”, whereby meant we have also perhaps missed stadium. It wasn’t this that woke us, As competing brothers we had been John Hannah makes a choice of time with family and friends, the reward more the fireworks that went with it! fortunate to catch the eye of the door to walk through, and on walking of walking out in the “Copper Box” and “You Can Be Heroes; Just For One media. We featured in a slot on BBC through his future path is set. Maybe representing our country aged only Day” sang the crowd as Peter Norfolk, Breakfast, Meridian TV, Adam’s video that 5-minute clip on BBC breakfast 17 and 15 is something neither David our flag bearer led our team on a lap diary on C4 Paralympics website, and was mine and David’s “Sliding Door”! nor I would ever swap. We didn’t of the stadium as the London 2012 even had a full page in the Times on start out wanting to be “heroes”, we Paralympics finally got underway! If our family. Each had reported how The last two years have been a hadn’t even started out thinking we we’re honest, David and I were a our Dad, back in the middle of 2010, whirlwind of training, competing and would make it to London! We simply little disappointed we couldn’t join the more training.

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