enable Forget can’t - think can!
www.enablemagazine.co.uk
May/June 2016
ACCESS EMPLOYMENT
NICOLAS HAMILTON
Your guide to getting ahead in the world of work
The racing star talks changing perceptions
CARE BY THE CLOCK Putting an end to 15-minute home care visits
THE WALKAWAY POUND How businesses are missing out because of access
DOLLS WITH A DIFFERENCE The campaign calling on greater inclusion in the toy industry
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NEWS
INTERVIEWS
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Welcome
forget can’t – think can
PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lindsay Cochrane lindsay.cochrane@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Matt Davis Rachael Fulton Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Gillian Smith gillian.smith@dcpublishing.co.uk SALES Dorothy Martin dorothy.martin@dcpublishing.co.uk ADMINISTRATION Lisa McCabe lisa.mccabe@dcpublishing.co.uk
ENABLE MAGAZINE www.enablemagazine.co.uk DC Publishing Ltd, 200 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007 Fax: 0141 353 0435
COVER PRICE £3.00
Hello, and welcome to the latest issue of Enable! This issue, we’ve got a bit of a family feel to the magazine. As you’ll see on the cover, we’re getting on board with the Toy Like Me campaign, where one woman is asking toy manufacturers to better represent disability in their dolls and figures. It’s a fantastic initiative – find out how to get involved on page 22. Elsewhere, we’ve been hearing from some incredible families, including the Chandlers on page 18 – dad Paul took his son’s diagnosis with Duchene muscular dystrophy as a catalyst for fundraising and fitness, and the pair now tackle marathons together in support of the hospice that’s offering the family such great support. Be prepared to be moved by the Chandlers’ fantastic attitude. Elsewhere, we caught up with some of the athletes who’ll be representing the UK at the Invictus Games this month, the sporting event for injured servicemen and women from around the world. We also caught up with JonAllan Butterworth, whose RAF career was cut short but has since made his name as a top cyclist in the ParalympicsGB squad. Also this issue, we’ve got a bumper employment and education section. In our Access Employment pages, you’ll find profiles of people with interesting careers, hints and tips to make your job application shine, info on training and education and find out more about the organisations offering support for disabled people searching for work. Check it all out from page 35 onwards! As well as being absolutely jam-packed with exciting articles, this issue marks our fifth anniversary – a great excuse for cake if ever I heard one. I’ve been working on Enable since its launch, and the last five years – and 30 issues of the magazine – have gone past in a blur! We’ve covered some incredible stories in the last five years, and I hope you’ve enjoyed being a part of it all as much as I have. A huge part of the magazine’s success is down to you, our readers. Without you, your stories, your views and interests, we’d be nothing. So thank you for all of your support over the last five years – and here’s to many more! Until next time,
Lindsay Cochrane, Editor
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DON’T MISS...
10 THE SUPPORT NETWORK
One mum on the importance of support when you have caring responsibilities.
58 NICOLAS HAMILTON
64 CARE ON THE CLOCK
The racing driver tells Enable how he’s using his position in the sport to inspire others.
The campaign calling for an end to 15-minute home care visits for personal care.
©DC Publishing Ltd 2016. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.
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What’s inside
WIN! A Kindle eReader on page 80 Interview 63 THE DISABLED CHEF Meet James Coke, whose love for good grub is making waves online.
74 PUTTING DISABILITY CENTRE STAGE Coronation Street actress Cherylee Houston tells Enable about her new project.
82 TEDDY THE WONDERDOG
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Wendy Hilling shares how her four-legged friend has changed her life. IMAGE COURTESY OF ITV
Voices 67 THE GAME BEGINS Tim Rushby-Smith on the impact sport has had on his recovery.
79 THE NEW NORMAL Dad Matt Davis discusses the need to ‘normalise’ when autism is a factor.
Life 31 THE TECHNOLOGY THAT’S CHANGING LIVES
Sport 14 GET YOUR HEAD IN THE GAMES The Invictus Games for injured servicemen and women are on the horizon – we caught up with three athletes representing the UK at the big event.
51 JON-ALLAN BUTTERWORTH With the Rio Paralympic Games just months away, London 2012 hero Jon-Allan Butterworth talks training with Enable.
Family 18 MAKING EVERY MOMENT COUNT Dad Paul Chandler talks about the impact of his son’s diagnosis with Duchene muscular dystrophy.
22 TOY LIKE ME The campaign calling on toy manufacturers to better represent disabled children in their products is anything but child’s play.
From the smartphone to the robotic vacuum cleaner, there’s a host of gadgets bringing increased independence to disabled people UKwide.
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76 ACCESSIBLE BRITAIN Fancy a holiday? There’s tonnes to do right on your doorstep.
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IMAGE COURTESY OF AMAZON
What’s inside
Spotlight
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69 THE WALKAWAY POUND Companies across the nation are missing out on business because their services aren’t accessible enough. Enable finds out what needs to change.
Care 64 CARE BY THE CLOCK Despite recommendations in the Care Act, some councils are continuing to commission 15-minute home care visits for personal care. Leonard Cheshire Disability tell us why this has to change.
Carers 10 THE SUPPORT NETWORK One mum explains why she established her own network to support carers in her local community ahead of Carers Week.
Motors 56 THE REVIEW This issue, we put the Fiat 500X through its paces out on the road.
58 NICOLAS HAMILTON The racing driver – and younger brother of a certain Lewis – tells Enable why he’s using his position in the sport to inspire others.
ACCESS EMPLOYMENT This issue, we’ve got a bumper employment section, brimming with advice, information and inspiration to help you get ahead in the world of work. Whether you’re after tips to make your CV shine, want to know about organisations championing the rights of disabled people or you’re after info on furthering your qualifications, we’ve got it covered. Check it out from page 35.
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the latest DISABLED PEOPLE AT INCREASED RISK OF VIOLENT CRIME A NEW REPORT from charity Victim Support has shown that people with a disability or illness are almost three times as likely to experience serious violence. The charity’s analysis of the Crime Survey for England and Wales shows that while violent crime as a whole has fallen by almost half in the past 10 years for the non-disabled population,
the number of people with a limiting disability or illness who experienced violence had risen by 3.7%. To put that into context, disabled people are more likely to be victims of violence than they are to visit a nightclub once a week. Lucy Hastings, director of Victim Support, said: “These findings are deeply alarming and warrant both
PIC: © MANUEL VASON @ DARC.MEDIA
Unlimited Festival lineup announced THE FIRST SHOWS for this year’s Unlimited Festival have been announced by the Southbank Centre. The six-day festival showcasing the artistic vision of disabled artists will take place at the London venue from 6-11 September. This year’s programme will feature the world premiere of Liz Carr’s Assisted Suicide: The Musical and dance piece The Way You Look (At Me) Tonight by Claire Cunningham and Jess Curtis. The festival will feature a variety of different art forms, thought-provoking pieces, comedy, puppetry, drama and more. Unlimited first launched in 2012 to coincide with the London Paralympic Games, returning again in 2014. This year, the event is heading to the Royal Festival Hall site, with a mix of free and ticketed events on offer. The full programme will be announced in May – check it out at unlimited.southbankcentre.co.uk.
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further investigation and action. “We recommend that further research is urgently undertaken, so that we can understand why the risk is so high and increasing, and how best to protect and support people with a limiting disability or illness.” If you’re affected by crime, visit www.victimsupport.org.uk or call the Supportline on 0808 1689 111.
NEW MUSCULAR DYSTROPHY DRUG APPROVED MEDICINES REGULATOR NICE has approved a new drug for treating children aged five and over with Duchene muscular dystrophy. The drug has the potential to delay the loss of the ability to walk in children and young people with the muscle-wasting disease. It’s the first drug to be approved which treats the underlying genetic cause of Duchene. Translarna (also known as ataluren) will be available to around 50 young people through NHS England, boys whose condition is caused by a certain mutation and are aged five years or older and able to walk. They will be treated for five years, giving the drug manufacturer time to collect data on the medication’s efficiency. Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: “This announcement comes as wonderful news and a true victory for the families. However, we are concerned now that it could takes months for NHS England to implement the agreement and get the drug to clinic. Having waited 18 months for a decision, this is a delay boys and their families can ill afford. We call on NHS England to act with the urgency and resolve that these children and their families deserve.”
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OFFICIAL FUEL CONSUMPTION FIGURES FOR JEEP RENEGADE RANGE MPG (L/100KM): EXTRA URBAN 47.9 (5.9) – 70.6 (4.0), URBAN 32.5 (8.7) – 55.4 (5.1), COMBINED 40.9 (6.9) – 64.2 (4.4), CO2 EMISSIONS: 160 – 115 G/KM. Fuel consumption and CO2 figures are obtained for comparative purposes in accordance with EC directives/regulations and may not be representative of real-life driving conditions. Factors such as driving style, weather and road conditions may also have a significant effect on fuel consumption. Vehicle shown is Jeep Renegade 1.6 E-TorQ EVO Sport available with NIL Advance Payment with Alpine White paint included. Advance Payments are correct at time of going to press and subject to orders being placed between 1st April and 30th June 2016. Not available in conjunction with any other offer. Terms & Conditions apply. Offer may be varied and withdrawn at any time. Jeep® is a registered trademark of FCA US LLC.
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News
the latest Stonewall and Regard discuss equality of LGBT disabled people AN EVENT EXPLORING the barriers faced by lesbian, gay, bisexual and trans disabled people has given individuals and organisations the opportunity to discuss how to achieve equality for all. The April conference, hosted by leading LGBT charity Stonewall and Regard, the LGBT disabled people’s organisation, hosted a number of different sessions exploring the unique experiences of LGBT disabled people and the challenges they face. Topics covered
included hate crime, accessing the LGBT scene, best practice in social care and the role of volunteering and community support. The event was also used to launch a new research project to better understand the challenges faced by LGBT disabled people, which will be turned into a new range of online resources. Ruth Hunt, chief executive of Stonewall, said: “We can only say we have achieved true equality when all LGBT people are accepted without exception. For LGBT people who are also disabled, or who have another marginalised identity, there are still far too many barriers to equality.” 8
EQUALITY ACT ‘FAILING’ DISABLED PEOPLE A SELECT COMMITTEE report has found that discrimination against disabled people continues to exist, despite protection set out in the 2010 Equality Act. Disabled Brits still face barriers to living independently, with access to transport and public buildings the major concern. The report – called Equality Act – Impact on disabled people – highlights a number of areas where the government needs to take action, including the way in which the Equality and Human Rights Commission works, accessible communiciation and the effectiveness of the Public Sector Equality Duty. Richard Hramer, deputy chief executive of deafblind charity Sense, said: “We’re deeply concerned by the findings o the ords report however, it sadly doesn’t come as a surprise. Sense consistently receives
feedback from the deafblind people that we work with that there are still huge barriers preventing them from living independently and playing an active part in their community. We know that disabled people are being refused access to transport, struggling to enter public buildings or losing jobs because of lack of appropriate support.” Rob Holland, parliamentary manager at the learning disability charity Mencap, added: “In light of the new Secretary of State for Work and Pensions Stephen Crabb’s statement to start a ‘new conversation’ with disabled people, this report’s warning must be listened to and addressed, before people with a learning disability can participate fully and equally in society without barriers.”
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Carers
Many carers rely on family and friends for support, but what if you’re on your own? Jill Grange speaks to Enable about raising her son and building a community support system JILL GRANGE HAS run an autism support group in Bridgend, Wales, for 14 years, through which she has helped hundreds of families in her area. She encourages carers to come out of their homes, meet like-minded people in similar situations and share their stories. She organises get-togethers and clubs, including evenings of gymnastics, swimming and bellydancing for carers, and participates in awareness-raising events. She is intrinsic to the community in Bridgend, a woman constantly championing the rights of unpaid carers. This wasn’t always the case. In 2000, Jill was living in Saudi Arabia with her then partner and her baby Matthew, when she began to realise something was wrong. At 18 months old, Matthew started to lose the little speech he had developed and was becoming rapidly disinterested in communicating with others. He struggled to stay still and his sensory behaviours were different to other children his age. Offered little to no support for her son while staying in Saudi, Jill realised it was time to come back to the UK.
HELP “I couldn’t get any help there,” says Jill. “I knew I had to return, get a house and try to find out what was happening with Matthew.” Matthew was later diagnosed with autism at four years old. While being able to give a name to Matthew’s behaviours gave Jill a mild sense of relief, the news came at a difficult time. Shortly before the diagnosis, Jill suffered the shocking tragedy of her mother’s death. Her father struggled to cope with his
THE
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• • Carers Week is an
annual campaign to raise awareness of the plight of carers like Jill, and the daily challenges they face, taking place from 6-12 June.
• This year’s Carers
Week is focusing on building carer-friendly communities, where support is available for carers as well as recognising carers’ needs.
Carers Week is a collaboration between Age UK, Carers UK, Carers Trust, Independent Age, Macmillan Cancer Support, the MS Society and MNDA.
• You can organise your
own Carers Week event to raise awareness, whether that be a coffee morning or an information day.
SUPPORT
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wife’s passing and became gradually more dependent on his daughter for support. “I was looking after a depressed elderly man and an autistic child who was running around everywhere,” says Jill. “They say that when you are at that age it’s the ‘Sandwich Generation’, caught between caring for elderly parents and children. I couldn’t work because of Matthew’s care demands, and three years later my husband said he couldn’t cope and left me.” With no support from her ex-husband or family, Jill was left to care for Matthew alone. She provided round-the-clock care for her son, resorting to home-schooling him when he struggled to settle at mainstream primary school.
• Events take place
across the country to celebrate the nation’s carers, as well as to reach out to carers in the community who aren’t getting support.
• To show your support, you
can write your own pledge on the Carers Week website or attend one of the many events dotted across the UK, from mindfulness courses to walking trips.
•
Find out more at www.carersweek.org.
COMPLICATIONS Around puberty, Matthew’s health issues began to worsen, and in 2011 he was diagnosed with epilepsy. As he grew older, Matthew experienced seizures and began to have violent outbursts when trying to communicate with his mum. “I had to call the police because the violence became so extreme towards me,” says Jill. “It wasn’t his fault – it was his way of communicating that something was wrong. He had no mental health problems, he wasn’t suffering from psychosis. He was just a young man struggling to communicate what he wanted to say. I became an emotional and physical wreck, covered in bruises and bites from these episodes.” Jill struggled with feelings of guilt after her son’s diagnosis. In time she came to realise that Matthew’s condition was not her fault and that feeling guilty was a natural stage of coping. She hasn’t let Matthew’s challenges defeat her, and it hasn’t impacted on the love and attention she bestows upon her son either. “I realised it’s OK for me to feel this way and that I’ve always done my best,” says Jill. “I’ve run a support group for 14
years because I didn’t want anyone to feel as isolated as I did.” Matthew is now 17 and has recently moved into residential care, where Jill continues to advocate for his needs. “He’s an adult now, although he doesn’t have an adult’s mental capacity,” says Jill. “He’ll never be able to manage finances, catch a bus, make himself something hot to eat – he has huge needs. Although he’s not with me anymore, I’m still caring for him. I am his constant advocate.”
SUPPORT Jill continues to campaign for carers and help build a support group for those who find themselves isolated and alone in times of crisis. Carers are so often unheard, and need people like Jill on their side – one of the main messages of Carers Week, the annual awareness-raising campaign which this year takes place from 6-12 June. “We always need support from each other,” says Jill. “We need awareness of how people are struggling. Unless you have 24/7 responsibility of another human being, you have no idea of how people cope. I have no family support, but I now have a close circle of friends. I seek help from them and share my problems.” In recent years, social media has also become an important outlet for carers to express their concerns and interact with other people in similar circumstances. In Jill’s experience, engaging with Facebook groups or posting questions in forums can provide a great deal of comfort for carers who are otherwise cut off. “The worst thing is to keep things to yourself,” says Jill. “Do something positive. Write to your local councillor and tell them what the situation is like. So much goes unnoticed and families end up taking the strain. Say what you need, but also seek a solution.”
NETWORK www.enablemagazine.co.uk
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“We need to support carers” Star of Lord of the Rings Billy Boyd is an ambassador for Carers Trust. Billy’s own experience of caring begins at home, with grandmother Martha. Here, he shares his story with Enable’s Rachael Fulton
BILLY BOYD HAS starred in some of Hollywood’s highest-grossing box office films. From playing loveable hobbit Pippin in Peter Jackson’s Lord of the Rings trilogy to portraying Barret Bonden in Napoleonic action flick Master and Commander, Billy has carved his name into film history. He calls Glasgow home, but flits back and forth to LA for filming projects. The LOTR star is also an ambassador for Carers Trust. Billy promotes greater awareness of the plight of carers within society and campaigns for support for those silently coping with challenging care schedules. His own experience of caring comes through the relationship between his sister Margaret and paternal grandmother, who died shortly before Billy was invited to become a Carers Trust ambassador.
ROLE REVERSAL “Seeing my sister Margaret care for my gran is my immediate family relationship to caring,” says Billy. “My gran lived until she was 100 years old and my sister quit her job in her later years to look after her. In a way it was a role reversal, because she used to be a carer for us.” Billy’s parents died within a year of each other when Billy was a teenager – his father of lung cancer and his mother of a heart attack. After their deaths, his grandmother Martha upped sticks from her home in Glasgow’s Easterhouse and moved into Billy’s home in Cranhill to become full-time kinship carer for her two grandchildren. Martha stayed with the children until they were 18, before returning to her own home. Later in life, Billy’s sister Margaret left her job as an auxiliary nurse and spent 10 years caring for her grandmother.
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“My sister was really happy to care for my gran, in a moral and spiritual way,” says Billy. “It was challenging, obviously, but it was the right thing to do. She really enjoyed it and did it for 10 years. “As I got older, I realised just how much of your own life is consumed by being a carer. It’s hard to imagine not being able to go out for a walk or go shopping by yourself without thinking of someone else. That’s why it’s important that the government come in and help, to give carers a bit of respite – to let them have a break and allow them a cup of tea.”
CHALLENGES The film star regularly speaks out about the difficulties and challenges faced by carers. For Billy, supporting carers begins within the community; neighbours helping each other and recognising the struggles of others. “Raising awareness is difficult,” says Billy. “You don’t think about caring if it doesn’t affect you. You might see someone in your neighbourhood who is a carer, perhaps someone who’s struggling to carry their shopping while pushing a wheelchair on the way home. “You have to take a second and realise how we can help each other as a community. When you’re a carer you have no time, and there’s often no one telling you that you’re doing a great job. We need to make this small effort to support carers, and call upon the government and organisations to do more to help them.”
i Carers Trust www.carers.org
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Sport
GET YOUR HEAD
IN THE GAMES This May, a team of over 100 injured servicemen and women are heading to Orlando, Florida from the UK, to take part in the Invictus Games. Former members of the armed forces from 15 different countries will go head to head in a range of sports, all in pursuit of those all-important gold medals. Enable caught up with three members of the wheelchair rugby squad ahead of the big event
STEVEN BOULTON Steven, 25, from Birmingham, is a former Lance Corporal in the army. He lost his left leg below the knee when he was blown up in an armoured vehicle while serving in Afrganistan in December 2012 “Becoming injured changed everything,” Steven says. “Then I saw the Invictus Games come to life, and all of that changed – being back with the boys has been a big thing for me.” Like many injured armed forces personnel, the loss of a team and camaraderie from his army days was hard to replicate – and Steven has loved being part of a group again where everyone shares the same mentality and drive to succeed. “After becoming injured, at first I was in a very dark place,” he says. “I thought I couldn’t do anything any more. This came along, and it’s been amazing. I know I can actually do something now.” Steven will be going for gold as part of
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the wheelchair rugby squad, a fastpaced, full contact sport that’s like a cross between wheelchair basketball, football and ice hockey. “I get a real sense of achievement from it,” Steven says. “Even though I’m injured, I can still do it.” He’s hoping for some time off to enjoy Florida too – but for now, his eye is firmly on the prize and using the Games as a platform to raise awareness of what life’s like for people injured while serving their country. “I hope the public see that people can achieve things while being injured,” he says. “It doesn’t all come to an end – there’s definitely life after injury.”
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ABOUT THE GAMES The Invictus Games were launched in 2014 by HRH Prince Harry, who was inspired after visiting the Warrior Games in the USA, a similar event for US army veterans.
MICHAEL MATTHEWS Cardiff native Michael, 29, had his army career cut short when a roadside bomb exploded, fracturing his L1 and L2 vertebrae, and leaving him struggling with PTSD. It was the provision of a recumbent bike from Help for Heroes that helped Michael see that there was still hope for his future. At the Games, he’ll be representing the UK in both wheelchair rugby and cycling “Being able to compete again has been amazing,” Michael says. “Once you’re injured, you feel as though your sporting career is completely finished, but taking part in adapted sports, it lets you feel comfortable.” Sport has played a vital role in Michael’s recovery, both in terms of physical fitness and his mental state. “Sport gives you a focus again,” he says. “When I first left the army, I went back home and found myself quite isolated because my friends and family didn’t know how to approach me or talk to me. Once I started training as a hopeful for the Invictus Games, the guys knew exactly what to say. The banter flows again. You come out of your shell.” Welshman Michael was a rugby fan before his injury, so the wheelchair version of the sport – also known as murderball because of its full-on nature – appealed instantly. And he hopes to take his involvement in sport further. “It’s definitely made me a happier person,” he says. “I want to see where I can end up in a sporting field. I want to develop the sports I’m playing, and see what happens.”
The name Invictus comes from the Latin, meaning ‘unconquered’ or ‘undefeated’. The first event took place in 2014 at Queen Elizabeth Park in London, with 300 competitors taking part from 13 different countries. The main drive of the Games is to show how sport can be used as a rehabilitative tool when recovering from accident or injury, and to show that there’s life beyond disability. From 8-12 May, competitors will be heading to Orlando, Florida, for the second Invictus Games, participating in sports including athletics, archery, indoor rowing, cycling, sitting volleyball, swimming, wheelchair basketball, wheelchair rugby, wheelchair tennis and the triathlon.
BEN STEELE Thirty-five-year-old Ben Steele from Hampshire is gearing up for his second Invictus Games – and he’s determined to pick up another gold for the UK. Ben lost his left leg through the knee after a motorcycle accident on his way to work with the RAF, and sport has played a major part in his recovery
“I was worrying about keeping hold of my job, if my wife was still going to love me – it was a bit of a shock,” Ben says. “But at the back of mind, I thought, I’m in the military, I’m going to get to go to Headley Court and I’d heard previous stories about that – they have the good prosthetic legs and treatments. So I was hopeful.” At Headley Court, the Help for Heroes rehabilitation complex, the GB wheelchair rugby squad came to visit and Ben got to give the sport a go himself – and there was no looking back. “I had a bit of a go at it and thought, ‘This is fun,’” he says. “Smashing into people in your wheelchair – it’s great! It’s an aggressive sport. I really enjoy it.” When Ben participated in the debut Invictus Games in 2014, he wasn’t expecting much to come from it – and was pleasantly surprised, especially when the UK came away with so many gold medals. “It was like nothing I thought it would be,” he admits. “I thought it would be like a school sports day, but it became such a huge event. It was massive. It was the best week of my life. I can’t wait to get out to Florida and go again.”
i The Invictus Games will take place from 8-12 May in Orlando, Florida. Catch the BBC’s coverage of the events from the 9th of the month, and keep up to date with the latest goings on at www.invictusgamesfoundation.org.
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Family
When your child is diagnosed with a lifelimiting illness, everything changes. Paul Chandler tells Rachael Fulton how he coped in the wake of the news that shook his family
P
aul Chandler shakes out his limbs, ready to tackle an ultra marathon around London’s Hyde Park and the Thames’ embankment. He has lost count of the races he’s completed since he laced up his running shoes for the London Marathon in 2010, compelled to raise funds for a charity that has become a vital crutch for his family. Paul has pushed son Dominic, nine, in an adapted wheelchair across more than 50 finish lines, but the father-of-two tackles today’s ultra marathon alone. His presence at the run is to support and inspire the other runners, to explain how crucial their fundraising is for families across London. He participates as a respectful nod to the corporate sponsors of Shooting Star Chase, the hospice that supports his son.
OVERWHELMING “After a diagnosis like Dominic’s, you start running and fundraising for the sake of your own wellbeing,” says Paul. “There’s so many negatives it’s overwhelming. You have running or cycling as an outlet for those feelings. I had the classic male reaction: a feeling of helplessness. You try and make yourself feel better, but if there’s no cure or treatment available you feel completely lost.” Paul’s son Dominic was diagnosed with Duchene muscular dystrophy just before his third birthday. The degenerative, life-limiting illness is caused by a mutation in the dystrophin gene on the X chromosome, and affects
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Making every moment count
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Family
approximately 1 in 3,600 boys, normally manifesting itself during infancy. In time, the illness causes increasing muscle wastage and paralysis, with most children becoming dependent on wheelchairs by age 12. The majority of patients face severe complications throughout their teens as the condition slowly weakens their internal organs and destroys muscle tissue. The average life expectancy for someone with Duchene is 25.
ENORMITY Paul and wife Fleur were overwhelmed by their son’s diagnosis. The following 12 months were spent gradually coming to terms with the enormity of Dominic’s condition and the ramifications it would have on the Chandlers’ family life. “We were practical about it, but we had a real low point for a year,” recalls Paul. “After the diagnosis, you hold onto little fragments of hope, but you’re in a very dark place. You start grieving. You don’t realise there’s a whole life still left to live. “We wasted a year feeling sorry for ourselves; we wasted time dwelling on the fact that we are going to lose him and that after he’s gone, we’ll still be here. It’s heart breaking.” Signs of Dominic’s condition had been present for over a year before an accurate diagnosis was made. Paul and Fleur watched their son miss key developmental milestones for his age group; struggling with physical tasks despite remaining cognitively sharp. He fell frequently, unable to adequately control the use of his muscles. Despite trying desperately to jump, the determined little boy couldn’t get his legs to leave the ground. Tests soon revealed a high reading of creatine kinase (CK), the enzyme secreted from damaged muscle tissue, which pointed towards muscular dystrophy. SEVERE Dominic was referred to Great Ormond Street Hospital for a tissue biopsy, where a more specific diagnosis could take place. “His CK level was off the scale, and we’d already done our research at that point,” says Paul. “The readings were so high. The consultant told us to brace ourselves. We knew at that stage that what was coming was severe.”
“After the diagnosis you hold onto little fragments of hope, but you’re in a very dark place. You start grieving. You don’t realise there’s a whole life still left to live”
After the initial heartache, Paul and Fleur began focusing their energy positively. Paul began running. He worked towards his first marathon, a feat that was as much about fundraising as it was emotional therapy for the determined dad. Drawing inspiration from Team Hoyt, a father-and-son racing team who have completed over 1,000 events together since the 70s, Paul realised he could involve his son in his new hobby. The purchase of a racing wheelchair meant Sunday mornings were soon spent lapping Richmond and Bushy Park together. Half marathons and marathons followed, Dominic nurturing a competitive streak and championing his dad to beat their fellow runners. When the duo aren’t racing together, Paul and Fleur are raising their academically gifted son to work towards a university education. They focus not
on the physical limitations caused by his illness but by his natural aptitude for academia, identifying Duchene role models such as Cambridge graduate Jonathan Gilmour, 27.
CRITICAL “We always focus on what he can do. We highlight his academic gifts,” says Paul. “Time is the thing. It’s so precious. This is a critical stage in Dominic’s life right now. He’s falling up to six times a day and walking is becoming detrimental to him. The likelihood is that he will break bones.” Paul’s fundraising supports the work of Shooting Star Chase, a hospice which provides help and support for 700 young people across South West London and Surrey, 365 days a year. The hospice supports families through the diagnosis stage, but also comforts them at the end of a child’s life and throughout the bereavement process. “Our strapline is ‘make every moment count’,” says Helen Sibley, director of care at Shooting Star Chase. “Parents often don’t know how long is left in their child’s life, so it’s about making every moment count from here on in. The word hospice has negative connotations, but it’s not just where people go to die. Families see it as a home away from home.” Children and families entering the Shooting Star Chase hospice are met with colour, laughter and an assortment of toys. The hospice requires £10million a year to deliver its current services, with only 10% of that subsidised by the government. Paul and Dominic’s races are increasingly important, not just to raise money, but to make their remaining time together as happy and fulfilled as possible. “It’s not the life you imagined for your child; he won’t grow up, get married and have kids, but there’s a lot to be said for a short life lived well,” says Paul. “We run races. We’ve travelled to America. Dom’s life will be short, but we don’t know how short.”
i Shooting Star Chase www.shootingstarchase.org.uk 01932 823 100
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product roundup: KIDS A roundup of some of the best products on the market for children with additional support needs
ONELEG LOW STOOL Lots of products out there can take on different purposes for different client groups. The OneLeg low stool from Designed 2 Enable is traditionally designed for gardeners, but parents are reporting lots of success for kids with ADHD and hyperactivity. The rounded foot of the stool lets the user move around without distracting others, and it’s proven to improve concentration and focus too. Get it: Designed 2 Enable, from £30 (www.designed2enable.co.uk, 0800 772 3771)
SPECIAL TOMATO EIO PUSH CHAIR
JENX MONKEY PRONE STANDER This simple height-adjustable system is a great introduction to standing for kids aged nine months to four years. The wide-angle range is a great way of building tolerance to standing as part of a therapy programme, with good support for the chest, hips and legs to make standing easier for kids who might struggle – and the cute monkey design is a huge hit too. Get it: Jiraffe, POA (www.jiraffe.org.uk, 0114 285 3376)
The Special Tomato eio pushchair is designed for children with mild to moderate postural needs. Suitable for children up to 41kg, the eio has padded hip and trunk sections, a padded headrest and a five-point harness, as well as all the features you’d expect from a standard pushchair. Get it: Special Tomato at Moorings Mediquip, £450 (www.specialtomatouk. co.uk, 0800 031 6571)
THE GRILLO The Grillo is a gait trainer designed to help make a child’s self movement easier. Its wide range of adjustments and supports make it easy to fit to the different needs and features of the user. Available in seven versions, with two models – front drive and posterior, with just one frame. The frame folds, offers a constant centre of gravity and has two ergonomic independent supports for trunk and pelvis. Call RMS now for a free demonstration or assessment. Get it: RMS, POA (www. ineedawheelchair.co.uk, 01795 477 280)
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LION SHOULDER WEIGHT This bright, friendly-looking lion from Play to Z provides a calming, soothing effect when worn round the shoulders. Good for kids with sensory processing disorders, learning disabilities, autism and more, this is a great accessory for many families in need of sensory support. Get it: Play to Z, £40 (www.playtoz.co.uk, 01206 796 722)
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Support for Life
Come and see us at Kidz to Adultz South on 9th June, we’re on stand 308 If you’re attending we would love to know what products you would like to see on our stand.
Visit surveymonkey.co.uk/r/KIDZSOUTH or scan the QR code and let us know.
Bringing you innovative postural support and service products for everyone, whether at home, school, rest or play. Seating
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TOY LIKE ME Where are all the disabled dolls? Rachael Fulton ta es a loo at the a aign fighting for etter re resentation of hildren in the toy ind stry
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FROM SASSY BRATZ DOLLS to musclebound superhero figures, toys on the marketplace today are all a bit shiny and perfect. But with 770,000 disabled children in the UK, maybe not everyone wants to see ‘normal’ – so Toy Like Me is fighting to put disabled dolls on high street shelves. Encroaching on a global toy market historically populated by able-bodied Barbies and Kens, Toy Like Me is challenging manufacturers to craft dolls that reflect a broad spectrum of disabilities. Early creations include dolls with vascular ‘port wine stain’
birthmarks on their cheeks, toys in wheelchairs and dolls accompanied by assistance dogs.
FRUSTRATED Founder of Toy Like Me Rebecca Atkinson has been frustrated with the lack of diversity in the toy industry since childhood. The underrepresentation of deaf people in toys and the mainstream media left Rebecca, who wore hearing aids as a child, feeling excluded and marginalised. It’s apt then that her adapted Tinkerbell doll with homemade cochlear implant was the catalyst for Toy Like
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Me’s viral success, capturing the hearts and attention of consumers around the globe. “I grew up with two hearing aids,” says Rebecca, who is partially deaf and has tunnel vision due to genetic condition retinitis pigmentosa. “When I was a child, I never saw myself represented in the toys I played with, in the books I read or in the TV shows that I watched. I remember seeing someone on Blue Peter with a talk-back earpiece and I thought it was a hearing aid. “I had a massive feeling of recognition. And I thought, ‘Oh, she is like me’. Although I realised later that wasn’t the case, it was a really powerful feeling.” More than 150million children worldwide have a disability, yet their representation in the world’s toy market (estimated to be worth £60.6bn) is surprisingly scarce. Mattel experimented with wheelchair-using ‘Share A Smile Becky’ in the 90s, but discovered that the Barbie Dream House lacked adequate wheelchair access. Likewise, Becky’s wheelchair prevented her from entering most of the Barbie buildings and vehicles. Although the doll was updated from the original version, it was later discontinued.
MASSIVE HIT Frustrated by the continued lack of representation of disabled kids, Rebecca enlisted the help of friends to create a fleet of adapted dolls, including Disney’s Tinkerbell with a sparkly popper-stud hearing aid. My Little Ponies became equine support assistants, Lego cowboys propped themselves up with canes and pretty princesses were given wheelchair thrones. The toys were a massive hit online, striking a chord with disabled parents and individuals internationally. Soon supporters across the globe were submitting their designs for what they saw as the next generation of children’s toys. After their viral success, Toy Like Me discovered bespoke doll makers Makie Dolls, a company that uses 3D printers to create toys. Toy Like Me asked Makie to create toys with hearing aids and canes and within weeks, the world’s first 3D printed dolls with disabilities were born. Fronted by their trusted gang of
“We are beyond happy right now,” said Rebecca in a public statement about the Lego breakthrough. “Lego have just rocked our brick-built world and made millions of disabled kids, their mums, dads, pet dogs and hamsters very, very happy. We’re all conga-ing up and down the street chucking coloured bricks like confetti.”
“I feel that toys should represent more of the real world, and having dolls look more trueto-life for disabled children would be great” Lisa Hunter
adapted dolls, Toy Like Me’s next mission was to convince toy giant Playmobil to commission disabled figures. Prior to Toy Like Me, Playmobil had a wheelchair user within a hospital set but had no representation of disabled people having fun, achieving or working within careers. Toy Like Me’s change.org petition garnered 50k signatures in one week, and Playmobil agreed to commission a range of disabled characters for 2016/2017. Building block megacompany Lego has also succumbed to pressure from Toy Like Me campaigners and recently released details of a wheelchair-using Lego mini-figure.
BACKING Thousands of parents are backing the Toy Like Me campaign to see better representation of their children in high street stores. For many parents of disabled children, anything that can make their child feel more powerful, accepted and strong is a gift. “I feel that toys should represent more of the real world, and having dolls look more true-to-life for disabled children would be great,” says Lisa Hunter, mother to Aaron, six, who has ROHADD syndrome. “Kids seeing toys in wheelchairs and with different abilities is a good thing. That’s why I think Aaron loves superheroes so much; they all have a vulnerability to them. Captain America was sick and ill before a government experiment turned him into a hero, and the professor in X-Men is in a wheelchair. “I’d also like to see books include children with various abilities and see them represented as different abilities, rather than disabilities. I want to see the story focus on the positives in the child’s life as well as help educate about the difficulties. It would be great to see more disabled representation on toy shelves and in storybooks.” Although individual specialist toys can be made for children with disabilities to help them better understand their condition, these dolls are yet to break into the mainstream market. Aaron has a teddy bear with a stoma to mimic his own, but these toys cannot be found amongst able-bodied dolls and bears on high street shelves. Toy Like Me has raised over £16,500 through a successful crowdfunding campaign to develop their business into a web hub, creating an online ‘home’ for the campaign to promote diversity within the toy industry – and hopefully bring big change for the millions of disabled children around the world.
i If you want to see more accurate representations of the world’s children on toy shelves and in books, support the campaign online at www.facebook.com/toylikeme.
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Spotlight
LET’S TALK ABOUT INCONTINENCE n ontinen e affe ts illions of Brits yet it s still so ething any find diffi lt to o e ith or even tal a o t. ne o an ho is oth ladder and o el in ontinent as a res lt of a s inal ord in ry tells na le a o t her o rney to a e tan e IF THERE’S ONE topic of conversation that we Brits like to avoid it’s what goes on behind bathroom doors. “It’s a private thing, isn’t it?” muses LadyMarie Dawson-Malcolm, a peer supporter with the Spinal Injuries Association who is 24 years spinal cord injured herself. “You don’t say to your friends, ‘I’m going to the toilet,’ then discuss the ins and outs of it all! Once you become injured though, complete strangers will be discussing everything like that with you.” In 1992, Lady-Marie’s life as she knew it changed forever when she sustained a C5/6 complete spinal cord injury as a result of domestic violence. Her partner broke her neck, leaving Lady-Marie paralysed from the chest down.
CHALLENGES As well as having to stay in a spinal unit for eight months when her daughter was just six months old, one of the biggest challenges Lady-Marie has faced has been one issue which many people new to spinal injury don’t think of straight away – becoming doubly incontinent. “I have a suprapubic catheter,” she explains. “There’s a hole in the pubic bone and an inflated balloon that’s on the inside holds it in place. That tube needs changed every six weeks.” The tube leads to a bag where the urine is collected and emptied regularly to avoid infection. “For my bowel, I take three different laxatives,” she adds. “The bowel gets very
lazy and sluggish, so I really struggle with constipation. Every other day, my carer will put suppositories in and then the district nurses will come and do a manual evacuation. I have no sensation, so it’s not painful, but the biggest problem is the embarrassment. It’s never the same nurse that comes.”
EMOTIONAL As well as the physical affects, incontinence has a big impact emotionally. It’s embarrassment, Lady-Marie says, which holds so many people back from speaking and asking for support – and can lead to complications. “It’s always in the back of my mind, especially if I’m out,” she says. “I’m always conscious of it; conscious of having an accident.” Despite the challenges she faces, Lady-Marie doesn’t let any of this hold her back – she’s studied four languages, got a law degree and won a scholarship to do an MA in international human rights law. She’s now a peer supporter for SIA too, helping newly and long-term injured people and their families realise what’s possible. “They all feel like they’re the only one this will happen to,” Lady-Marie says. “But they’re not alone – we’re here for them and we’ll always help.” Call the Spinal Injuries Association’s free advice line on 0800 980 0501.
i The Spinal Injuries’ Association offers a home delivery service, SIA Healthcare, where medications and appliances are delivered discretely straight to your door, including urology and stoma equipment from a variety of manufacturers. Find out more at www.spinal.co.uk. www.enablemagazine.co.uk
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News
Get in touch Want to have your voice heard? Write to us: Your View, Enable Magazine, DC Publishing Ltd, 200 Bath Street, Glasgow, G2 4HG or email letters@enablemagazine.co.uk
YOUR VIEW na le readers ta e to the oor to share their tho ghts on the aga ine CHANCES •I’d likeSPORTING to congratulate the Enable team on their fantastic sports coverage so far this year on the run up to the Paralympic Games in Rio. The London Games were such a success that I know I’m not alone in my high hopes for the South American edition of the Paras. It’s been great to see a mix of do-it-yourself advice and athlete interviews in the pages of the magazine
to get us in the Paralympic spirit – it’s even inspired me to get in touch with my local wheelchair basketball team, something I never thought I’d see myself doing! I hope the Games this summer inspire even more Brits to get out and get active. My physical and mental health have both been boosted significantly by my new hobby – I couldn’t recommend it enough. Peter Matthews, Glasgow
•
INCREDIBLE KELLY •I really enjoyed Enable’s
Mrs I Withers, Stoke
interview with model Kelly Knox in the March/April issue of the magazine. I’m an amputee, and often struggled with body image when I was younger – and we absolutely need more fantastic, clever, switched on role models like Kelly to show us that beauty comes in all shapes, sizes and packages. I’m definitely holding onto the interview to show my daughter when she gets older as a reminder that sometimes it’s OK to be a little bit imperfect – a message all young girls could do with hearing, whatever their ability.
AUTISM-FRIENDLY ENTERTAINMENT After our last family outing to the cinema ended in disaster, we were reluctant to take my daughter to the local theatre again – until I found out about autism-friendly cinema screenings in the last issue of Enable [March/ April 2016]. Our trip in March was a revelation – it was so nice to be in an environment where all the other mums and dads knew what you were going through, and our little girl had the time of her life. Thanks for bringing it to our attention!
Paula, via email
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TRIRIDE: COMPACT, EASY, LIGHT always with YOU Triride ®, is a smart, efficient and convenient solution for turning a manual wheelchair into an electric “trike”. • It is compact, easy to handle, light and can be stowed in any car boot. • It adds very little to the wheelchair length, due to its 14” motor wheel. • Max steering angle: 90°, therefore you U-turning on the spot. • Reverse gear adds further ease of manoeuvre. • Suitable for both indoor and outdoor usage. • Quick and easy attaching and detaching to/from the wheelchair. • It has a dry cell Li-ion battery, easily and safely transportable on car, train and plane. • The battery gives you a 50Km (30+ miles) range, allowing a great independence of movement.
Triride is conceived, designed and produced in Italy by Gianni Conte, who made the first prototype for his personal use and then decided to start a production founding Triride Srl (www.trirideitalia.com). Triride has been introduced in the Italian market a couple of years ago and, as of today, some 2,000 pieces have been sold.
Triride ® is imported in UK by Mobilitise Ltd. Contacts: info@mobiitise.co.uk - www.mobilitise.co.uk
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Life
Since the advent of the personal computer in the 1980s, the way disabled people live their lives has been revolutionised – and technology is bringing about greater independence, choice and inclusion for disabled service users every day. Enable takes a look at some of the top tech that’s making a difference on a day-to-day basis
The technology that’s changing lives IMAGINE A WORLD without technology. No computers. No smartphones. No ondemand TV services. No audio description at your local cinema. No automatic doors or personal alarms. It’s almost unfathomable. And even more so when you have a disability and depend on technology to help you go about your daily life. Tech has truly changed the way we live – and that’s even more true for the disabled population. Assistive technology – both mainstream and specialist – is giving people greater independence, freedom and choice in an array of different ways. “I’m blind myself so I use it on a daily basis,” explains Robin Christopherson, head of digital inclusion at AbilityNet. “It enables me to do my job, be employable – if it wasn’t for technology, I’d be lost. It’s absolutely revolutionised things for people with a range of disabilities.”
LEAPS AND BOUNDS AbilityNet work with individuals and
employers to help identify the best assistive technology options for the workplace, home and education – and it’s an incredibly exciting sector to work in for Robin and the team. In the last few years alone, technology has come on leaps and bounds, bringing greater advances for disabled people with it. The biggest bonus, Robin points out, has been the smartphone – in particular Apple’s iPhone. Smartphones are essentially miniature computers, with touchscreens, internet access and an operating system which lets you download different applications – and there are lots of great accessible apps on the market, often costing little or no money. “Prior to smartphones, you would need to have a different gadget for different tasks,” Robin points out. “As a blind person, you’d need a talking note-taking device. You’d need a talking GPS device. You’d need a talking audiobook player. You’d need a talking scanner. All of those things are apps now, and most of them are free.”
CONNECTED HOME Smartphone technology goes beyond communication – apps, Bluetooth and WiFi can all come together to create a ‘connected home’, which enables you to control various everyday devices from a smartphone or tablet. “There are huge advances here for somebody who, for whatever reason, would find it difficult to handle appliances like switch lights on and off, or answer the door,” Robin says. “All of these things can now be manipulated from a smart device. If you’re bed-bound or maybe can’t move about freely, that would give you a lot of power and freedom.” There are accessible options for nearly every room in the home now. Bed sensors, flood sensors, talking microwaves and smart fridges which can keep track of what you’ve got stored, audio description televisions, robotic vacuum cleaners, communication apps for tablets and smartphones, video doorbell systems that let you see who’s on your doorstep – there’s so much out there to
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get involved with. “At AbilityNet, we’ve got this vision that everything in your house can be smart,” Robin says. “It doesn’t have to be so smart as to have built in it all of the input and output options that people with a range of disabilities might need. So long as it has a little Bluetooth chip in it that talks to your phone, your phone can be a speech box, for example.”
ADVANCES And there’s plenty more exciting advances on the horizon. It’s healthmonitoring wearable tech and the self-driving car that excite Robin most. Trials are already well underway, with autonomous vehicles being trailed on UK roads this year. For people who physically or legally cannot drive, self-driving motors could offer a whole new level of independence – and, if reports are to be believed, could be even safer than cars driven by people. Robin says: “I anticipate that, within the decade, there will be very affordable options for people to have autonomous vehicles, or even that all cars have that as an optional extra like your alloy wheels.” Every day, tech companies are releasing new products with more and more accessibility features, as standard, taking assistive tech mainstream – and more affordable than ever before. To assess your options, get in touch with AbilityNet or your local independent living centre to see what they can recommend for your needs and preferences. “It’s a full-time job just keeping track of what’s out there at the moment!” adds Robin with a laugh. “In my role at AbilityNet, I get to do a bit of public speaking, so I get to future gaze a lot and I can get excited about stuff. I like looking forward.”
i AbilityNet www.abilitynet.org.uk 0800 269 545 Ask SARA asksara.dlf.org.uk
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TOP TECH ROOMBA 980 www.irobot.co.uk
SAMSUNG SMART TVS www.samsung.co.uk
iRobot’s Roomba robotic vacuum cleaner makes cleaning your home easy – you just switch it on and set it on its way. The Roomba uses clever technology to make its way around your room, leaving a crumb-free carpet in its wake. Perfect for people with mobility problems.
Samsung recently won an RNIB Inclusive Society Award for its range of smart TVs. Straight out the box, the televisions come with integrated Textto-Speech, zoom and high contrast user interface as standard, meaning blind and visually impaired people can use the TV with no adaptations.
ASSIST-MI www.assist-mi.com Assist-Mi is a revolutionary app for iPhone and Android which gives assistance to disabled people on the go. GPS technology and two-way messaging allows service users to request real-time assistance at the touch of a button.
CANARY www.canarycare.co.uk Canary is a high tech home monitoring system, which uses sensors to track what older or disabled people are up to at home, and your loved ones can check in online to keep track of what you’re doing – and they’ll get alerts via text or email if there’s anything wrong.
BT4600 ADVANCE NUISANCE CALL BLOCKER www.shop.bt.com BT has a great range of inclusive telephones, offering everything from built-in nuisance call blockers to big button handsets – and the BT4600 offers both! These cordless handsets have large buttons for those with difficulty with dexterity, plus you can block up to 1,000 numbers.
www.enablemagazine.co.uk
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H Y D E N E W H O M E S AT T WO F I F T Y O N E , S O U T H WA R K New Shared Ownership wheelchair accessible homes Benefitting from communal private cinema, gymnasium, security, lounges and external gardens. Own private winter gardens. Ministry of Sound is opposite Two Fifty One. For more information on room sizes, kitchens and specifications
CALL HYDE NEW HOMES ON 0845 606 1221 OR EMAIL INFO@HYDENEWHOMES.CO.UK
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Get the break you really deserve
With 24-hour on-call nurse-led care and an exciting programme of 10% t excursions, activities and entertainment, we give disabled people and coun e s i d carers something truly unique – a break that feels like a proper holiday. abl
En for rs* e d a re
Request a brochure! Call 0303 303 0145 (quote ENA16) Registered charity number 295072
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Visit revitalise.org.uk
Email bookings@revitalise.org.uk *terms & conditions apply
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ACCESS EMPLOYMENT Opening up opportunities for people with disabilities, from training to lifelong career dreams BOOST YOUR CHANCES Accessible training and education pathways to help you bag that dream job
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FIRST IMPRESSIONS COUNT
How to wow recruiters, from your CV to interview stage
MEET THE EMPLOYEES Two disabled workers talk through their career success so far
EMPLOY AUTISM
The campaign asking for change for young people with autism
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Amazing opportunities to kick-start your career with Channel 4!
2016 is the Year of Disability at Channel 4. It’s the year when we will broadcast the Paralympic Games in Rio and provide more on and off-screen opportunities for people with disabilities on our biggest shows and with our biggest suppliers. Alongside this, we have ring-fenced 50% of places on our Apprenticeship and Work Experience programmes to support people with disabilities to get into the media industry, and start to build exciting careers.
Apprenticeship Programme - Work within a department at Channel 4’s offices in London, Manchester or Glasgow for 12 months - Study towards a NVQ Level 3 in Creative Media or Business Administration - Get paid an annual salary of £18,500 - Make amazing connections to support your future career.
Work Experience Programme - Join 4Talent for one week to understand how a major broadcaster is run - Spend part of the week shadowing the department of your choice (such as Marketing, Sales, Commissioning, Research or Film4) - Unpaid, however all expenses will be covered including travel, accommodation (if you live outside of London), food and any required adjustments or support.
When? Apply online from 4th July via 4talent.channel4.com/get-involved/ work-programmes/apprenticeshipprogramme
When? Work Experience Weeks will take place on 6-10 June 2016 and 24-28 October 2016.
Successful applicants will start their roles at Channel 4 in October 2016.
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For more information go to: 4talent.channel4.com/about-us twitter.com/4Talent instagram.com/c4talent Or contact us: E: 4Talent@Channel4.co.uk T: 0207 396 4444
Applications will be open six weeks before via 4talent.channel4.com/getinvolved/work-experience
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ACCESS EMPLOYMENT
DISABILITY AND EMPLOYMENT:
THE FACTS
It’s a fact – disabled people have a harder time getting into work than people without disabilities. But not all hope is lost. Check out how it all weighs up below
One in five people
More than half of adults
of working age in the UK have a disability.
with a disability say that they experience barriers when it comes to looking for work – just 30% of people without impairments say the same.
Over 50% of people who are out of work are disabled.
Around 40,000 disabled people graduate from university each year.
In 2013,
12% of disabled people were unemployed – compared with
7.6% of non-disabled people.
Disabled graduates are less likely to be in work than non-disabled people with no qualifications.
People with disabilities are
The most common barriers to work are
four times as likely
lack of opportunities
as non-disabled people to be out of work.
and difficulty with public transport.
85% of people
There are currently
feel that employers could do more to create more employment and career progression for disabled people.
in the UK who are available for and want to work.
Disabled people are to have no formal qualifications as non-disabled adults.
1.3m disabled people
twice as likely
SOURCE: DISABILITY IN THE UNITED KINGDOM 2016, PAPWORTH TRUST
DON’T PANIC While these statistics make for pretty grim reading, it’s not all doom and gloom – there’s some positive news too! Disabled people are less likely to take time off work sick than their nondisabled colleagues, and once in a job, they tend to be more loyal as employees too, and stay where they are for longer. Disabled workers also tend to be more
flexible, better at problem solving and more committed to their jobs – so there’s plenty of reasons for employers to tap into the talent that disabled people have to offer. Better still, there’s lots of support out there to help disabled people get into work, and plenty of employers who are going the extra mile in terms of inclusion
to help you achieve your working goals. Enable’s Access Employment section is brimming with information to get you off to the best start in your employment search, whether you’re out of work, getting started in employment or keen to switch jobs or careers. Keep reading to see what the world of work has to offer…
www.enablemagazine.co.uk
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THE JOB HUNT: GETTING AHEAD Looking for a new career but not sure how to get yourself noticed? We spoke with disa ility e loy ent s e ialists ven rea to find o t their to hints and ti s on bagging your next job
T
he job market can be a minefield to navigate, whether you’re between jobs or pondering a change from your current career. When you factor in a disability, as well as the accessibility and demands of your new job, things can get even more complicated. Evenbreak is an organisation designed to help people with disabilities secure and maintain sought-after job roles. Evenbreak provides support, advice and guidance for disabled people to enable them to achieve their full potential in a competitive job market, matching employers who value diversity with job seeking disabled candidates. “It’s important to identify employers who are going to be open to disabled candidates – that’s what Evenbreak is
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all about,” says Jane Hatton, director and founder of Evenbreak. “The employers who advertise jobs with us are actively seeking to employ disabled candidates. The other part of our work is showing people how to market themselves and their skills towards employers.”
BARRIERS Disabled candidates face various obstacles in the workplace – some invisible and some physical. The internal barriers of low confidence and concerns about employer perceptions may prevent candidates from initially applying for jobs, and once they’ve dealt with that first hurdle they have accessibility issues to contend with. “Once candidates have overcome these internal barriers, they face external barriers of the application and interview process,” says Jane. “For example, for some candidates with autism the idea
www.enablemagazine.co.uk
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of talking to someone at interview is as appealing as jumping into a live volcano. There are big internal and external barriers – the idea that employers might not think people are capable because of their impairment. There’s the worry that perhaps employers will be concerned about costs incurred when employing a disabled candidate, or the productivity of a candidate.” There is also the issue of interview and application accessibility – is the print on the screen large enough to read? Are there wheelchair ramps available to get into the interview? These are all things to consider before meeting a potential employer.
TOP TIPS So what’s the best way to stand out from other applicants? According to Jane, highlighting the positive aspects of your disability rather than the negatives can play to your advantage at interview. “If you are talking about your disability, really focus on the positives,” says Jane. “Someone with autism might be very good at spotting mistakes, or might be good at coding. Someone deaf might be more productive, as they won’t be distracted by office gossip. If you use assistive technology like a dictation machine at work, this might lead to fewer errors. Think about how your impairment might benefit the company.” Jane also recommends including any unpaid work experience, volunteering and hobbies within your CV. Even if you haven’t worked in full-time employment before, your life experience is still valuable to potential employers. “It’s about trying to find out as much as you can about what the employer is looking for, then giving concrete evidence as to how you as a candidate
can meet that,” says Jane. “Choose examples of what you’ve done in real life situations that worked successfully – not necessarily in a paid employment environment. If the job application asks for specific skills, give examples of where you used it – what was the situation, how did you deal with it and what was the result?” Many interviewers use the STAR technique (Situation, Task, Action, Result) to assess a candidate’s ability to deal with real-life situations. This involves using an example of a recent challenge (situation) and then explaining what you tried to achieve within that situation (task). Your actions within the situation and the outcome (action
“If you are talking about your disability, really focus on the positives” Jane Hatton, Evenbreak and results) are what follow. Using this format when filling out application forms and answering questions in interview will give employers an accurate idea of your behaviour in challenging situations.
DECLARING DISABILITY Many people choose not to disclose their disability within the application process. It is a personal decision for the candidate as to whether they disclose in their CV or cover letter. If you have a disability that requires adjustments in the workplace, or limits your ability, it may be preferable to disclose in advance and outline the limitations for attending interview or carrying out certain aspects of the role.
If you choose not to disclose your disability, you may run into difficulty later should you need to make a complaint against your employer before a tribunal. In this respect, disclosing your disability early might benefit you in the long run. “If you have a physical impairment it’s often best to explain straight away, as they may see the disability at interview and perhaps they need to make reasonable adjustments for the recruitment process,” says Jane. “Some impairments are hidden and some choose never to disclose their disability as a result. There’s no legal obligation, but it may benefit the candidate later.”
EMPLOYER EQUALITY Although workplaces are becoming gradually more accommodating for disabled candidates, there is still a long way to go to ensure equality in the employment process. By focussing in on job applications that are specific about candidate requirements, disabled applicants can play to their strengths and ensure they bag an interview, if not the job. “We’ll be putting resources on evenbreak.co.uk that will really help disabled candidates review their own skills, to do an audit on what they have to offer,” says Jane. “As disabled people, we tend to focus on what we can’t do, but it’s much more productive to focus on ‘can’ – tasks you can complete, personality traits that are useful for employers. Look at what you have to offer and what you enjoy.”
i If you’re looking for work, check out opportunities from disability confident employers at www.evenbreak.co.uk.
USEFUL RESOURCES Jobcentre Plus www.gov.uk/jobsearch
Remploy www.remploy.co.uk 0300 456 8110
Shaw Trust www.shaw-trust.org.uk 01225 716 300
Disability Rights UK www.disabilityrights uk.org
Disability Jobsite www.disabilityjob site.co.uk
www.enablemagazine.co.uk
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Yorkshire Housing provides homes, care and support across Yorkshire. Our core purpose is to provide good quality affordable homes to rent. Our people are key to our success and we are committed to creating and maintaining a diverse workforce, this is reflected in our employment practices, both in terms of our recruitment process and also within our policies and procedures. We have offices throughout Yorkshire and we are an equal opportunities employer and an Investor in People organisation, committed to staff training, personal development and offer a competitive reward package. For more information on volunteering or working for Yorkshire Housing and to view our current vacancies please visit our website or contact 0113 825 6157.
We are very proud to be recognised as a Stonewall top 100 employer.
Yorkshire Housing is proactively working to implement its Equality and Diversity Strategy. We positively welcome and support diversity in our workforce and welcome applications from all sections of the community. www.yorkshirehousing.co.uk
NORTH WEST REGION
Study at SRUC
REGIONAL WOMEN’S & EQUALITIES OFFICER
Scotland’s Rural College
Sharon Hutchinson 0161 669 8701
• Courses in a wide range of subjects related to land-based and rural skills and industry.
• Training and skills courses. • Academic progression through NC, HNC, HND and beyond. • Undergraduate and postgraduate degree courses. • Supported accommodation offered at our Elmwood
Equalities are at the heart of Unite and we have an Equalities Officer in each of our 10 regions. Sharon Hutchinson is the Equalities Officer for the North West Region.
Campus.
Sharon works with our Women Members; Black Asian Ethnic Minorities Members; Lesbian, Gay, Bisexual & Transgender Members; Young Members and Disabled Members. We support as many community projects as possible and have raised money and have received donations of clothes; toys; prams and other goods for domestic abuse services and refuges’ in the North West and raised funds for The Neurosupport Services in Liverpool. If you would like to get involved with Equalities in the North West please contact Sharon on the above number.
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• All students with disabilities are supported to allow them to reach their potential.
• Tailored support packages available. UNITY NOT DIVISION EQUALITY NOT DISCRIMINATION TRADE UNION RIGHTS NOT EXPLOITATION SOLIDARITY NOT HATRED
Visit our website to find out more: www.sruc.ac.uk/education
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ACCESS EMPLOYMENT
SUPPORTED EMPLOYMENT:
MAKING THE IMPOSSIBLE POSSIBLE Community Integrated Care’s Renata Davis tells Enable what the charity is doing to make work a reality for more people with complex needs WHEN YOUR DISABILITY requires a little bit more than physical adaptations, the thought of securing a job can be intimidating. But with the right support, it can become a reality. Community Integrated Care (CIC) offers its Vocational Support Service, which works with individuals with autism, learning difficulties and mental health needs to help them identify a job which they’ll enjoy, get work experience, gain skills, training and qualifications and, eventually, get paid work.
SUSTAINABLE “We support our service users to identify the right working environment and the right job, working with their aspirations,” explains Renata Davis, who heads up the Vocational Support Service. “We started working with one young man, Tom, and he knew he wanted to work in a kitchen, but we knew he had some sensory issues due to his autism. He didn’t like electric buses, things like that. We had to plan his route to work to avoid electric buses
and supported him to find a job somewhere where he could have a quiet space – which is quite hard in a kitchen. We had to look at things like that and what’s going to make it sustainable; what’s going to impact positively and negatively on him.” Through the service, young people with complex needs are getting into roles that suit their needs and dreams. Through the programme, they’ll receive training ahead of their placement, and one to one support from a support worker, who will accompany them to their placement or job. “We provide one to one support and consistent support, so you’ll have an identified support worker; the same person is going in and going over things with the person every day,” Renata explains. “It might be that, at first, the support worker is doing a big part of their job as they use training and systematic instruction and different ways of breaking down tasks to make it make sense to the individual, depending on their needs. Once the person’s doing their whole job role, we’ll start to fade
out, but we do keep in touch with the employer and the employee.”
BENEFITS Some candidates try out different roles before finding a job they enjoy, and for some, the initial placement does result in paid employment – one young woman has now been working with Costa for five years after a 12-week job trial. Both the partner organisations – which include big-name employers like Next and Pets at Home – and the candidates themselves are reaping the benefits from the programme. “We’ve had feedback from various partners, like ASDA and Wetherspoons, and they say they get lots of positive feedback from their customers, and the colleagues of the people we support say it’s changed their attitude towards people with disabilities in general, because they work with a positive young person,” Renata says. “For the people we support, it’s incredible too. The best kind of things that happen are, as someone increases in confidence, they increase in independence.”
i To find out more about Community Integrated Care’s Vocational Support Service, head to www.c-i-c.co.uk, or call 0151 709 1950.
www.enablemagazine.co.uk
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ON THE JOB After some careers inspiration? Two people tell us about their interesting working lives
Making it in media Ever thought of working in television? Bethan Broster tells us what it’s like working in national news
B
ethan Broster is a subtitling team leader at Scottish Television [STV]. Using dictation technology, Bethan provides subtitles for STV live news, sport and current affairs programmes, as well as pre-recorded shows like Animal 999 and Jak and Eddie’s Scottish Kitchen. She manages a team of around seven subtitlers and has been at STV for 20 years. “I got into subtitling completely by accident, with a little bit of luck,” says Bethan, 42. “When I finished university I sent speculative CVs to any company that I thought would be interesting to work for. I’d also done a thesis on training and the People Plus award, so applied and got a job as a product development officer at the Scottish Qualifications Authority.” Just before Bethan began her job at SQA, she was approached by STV to interview for a contracts assistant position. Although she didn’t end up landing the job, she was on the TV company’s radar. Three months later, they contacted her and asked her if she would be interested in subtitling. It meant a drop in salary and increased working hours, but Bethan accepted the job and has never looked back. “I love the variety in my job,” says Bethan. “I may work on the news every day but the news is never the same!
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“I am so lucky to be in a job that allows me flexibility, and there are times when I can take it slower to prepare for when I know it’s going to be busy”
I really love the hours because I don’t start before 10am, and I have a great team that make it a pleasure to come to work each day.” Bethan refuses to be defined or held back by her disability. Over the years, STV has accommodated any extra requirements she has for her day-today job within their Glasgow office. “I don’t really ‘see’ my disability and I don’t believe other people around me, particularly those closest to me, do either,” says Bethan, who is a wheelchair user. “I am so lucky to be in a job that allows me flexibility, and there are times when I can take it slower to prepare for when I know it’s going to be busy.” When it comes to applying for a job you want, Bethan knows that self-belief goes a long way in the interview and application process. Projecting an image of someone confident in their own skill set is more likely to impress an employer and make you a memorable candidate in a crowd of applicants. “I know it’s easier said than done, but I do believe if you see problems, others will too,” says Bethan. “So be confident in the skills you have and if you believe you can do a job, employers will see that and believe it too.” For more information on working at STV, head to www.stvplc.tv/careers
www.enablemagazine.co.uk
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“If I had given up at my first rejection, I would never have secured a training contract. Resilience is key”
Laying down the law The legal world is full of exciting opportunities, as Jonathan Andrews will e finding o t after the s er hen he starts training as a soli itor ith legal fir eed ith
J
onathan Andrews, 22, is about to begin his career as a trainee solicitor at leading law firm Reed Smith. Jonathan applied for Reed Smith’s summer vacation scheme before bagging a role as trainee solicitor, hoping to specialise in media and entertainment law in the future. “The recruitment process at Reed Smith was brilliant and really stood apart from other firms,” says Jonathan. “It was designed to weed out unconscious bias. There were no online tests, and the interview for the summer vacation scheme was strengths-based rather than competency-based. Rather than discussing past experiences in work, we instead answered questions designed to draw out our character, so the firm could get to know us as a person.” Jonathan was diagnosed with autism and dyspraxia at age nine, and struggles with new situations or environments where he can’t plan ahead; which can make interview and assessment scenarios a problem. Despite this, the positive aspects of Jonathan’s autism help him to achieve within his job and can be an asset to the company. “Autistic people tend to have great attention to detail,” says Jonathan. “As well as being motivated for their job and being more punctual, they stay with employers longer and are more focused on getting a job done than involvement with office politics. Both autism and dyspraxia help you think differently and approach problems from different angles.” Jonathan applied for 25 firms in total and received four vacation scheme
offers and two training contract offers. His tenacity and drive to succeed is what Jonathan believes has landed him his new career at Reed Smith. He has transformed his disability into a positive, using the skills it gives him to their full potential. “Whether you have a disability or not, I think it can be tempting for people to blame not getting a job on discrimination – and while this does sometimes happen, often competition is simply very fierce,” says Jonathan. “If I had given up at my first rejection, I would never have secured a training contract. Resilience is key.” Reed Smith is actively making their workplace and interview process more accessible for people with wideranging disabilities in order to obtain the best employees in the country. They promote early disclosure of disabilities from candidates so that the recruitment process is smoother and easier to navigate for every applicant. “We want to attract the best talent from every available talent pool without any limit,” says Carolyn Pepper, Reed Smith partner and chair of the firm’s Disability Task Force. “The work that we have done so far is only the beginning. The challenge is to ensure that people with disabilities feel comfortable disclosing their disabilities when going through the recruitment process and trust the potential employer not to discriminate so that any necessary adjustments can be made.” Find out more about careers with Reed Smith at www.reedsmith.com/careers
www.enablemagazine.co.uk
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THIS IS WHO WE ARE. We’re looking for people with the right set of skills. Individuals who know what they’re doing and can really contribute to BBC Digital – no matter what their background. So if you think you’ve got something special to offer, we want to hear from you. Search bbc.co.uk/careers/digital
Employment Opportunities Know what you want to pursue as a career, or looking for ideas? Interested in employment or placement opportunities? NHS Lothian is responsible for providing healthcare services to a population of more than 800,000 people. We have a wide range of jobs at entry and qualified level and offer great opportunities for career development – and much more. We recognise the value that everyone brings to our organisation. Through our ‘Job Interview Guarantee’ we will consider you on your abilities and guarantee an interview where you meet the essential criteria for the post. We actively support a range of different groups to gain or get back into employment. The types of careers we offer include:
Management and administrative
Treatment and care
Information and IT
Dentists, Doctors, Health Visitors, Healthcare Assistants, Midwives, Nurses, Allied Health Professionals, and many more…
Trades, skilled and support
Caterers, Domestics, Chaplains, Drivers, Electricians, Porters, Fire, Safety & Security Staff, Maintenance, and many more…
Accountants, Clerical Officers, Communications, Human Resources, Medical Records, Receptionists, Secretaries, Telephonists, and many more…
Scientific and technical
Clinical Scientists, Laboratory Staff, Medical Technologists, Medical Photographers, Technicians, and many more… Analysts, Librarians, Audio Visual Technicians, Computing Staff, Information Manager, IT Trainers, and many more… All our vacancies are advertised on: www.jobs.scot.nhs.uk and more information on NHS Lothian can be found at www.nhslothian.scot.nhs.uk
Come and see what we can offer for your career in healthcare Enable advert NHS Lothian NHS Lothian 2014.indd 1
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hether yo ant to oost yo r e isting alifi ations ta e yo r areer in another dire tion or st learn so ething ne there are lots of ays to f rther yo r ed ation hatever yo r interests. e ta e a loo at so e of the est ays to i rove yo r s ills and in rease yo r han es in the o ar et
TOP OF THE CLASS COLLEGE Your local further education college will have plenty to offer wannabe learners. Colleges across the United Kingdom cover courses at a vast range of different levels in just about every subject area going. You can use your FE college to pick up some A-levels or retake exams you maybe didn’t perform in as well as you would have liked. Some colleges have higher education institution status, meaning you can even study up to degree level in your chosen field. Undertaking a college course can have several different functions. You can use it to pursue a short course, a longer diploma, as a stepping stone for university or to get the qualifications required for a specific job. Of course, college isn’t just about academic qualifications or training for a job – and there are study options for people with more complex needs too. Some institutions offer specialist provision for students with additional support needs. Employability and life skills courses are offered both at
mainstream and specialist colleges, offering a foot up in terms of independence.
UNIVERSITY Uni life isn’t as inaccessible as you’d think either. Every year, 40,000 students with disabilities graduate from uni in Britain in a diverse range of subjects from English literature to astrophysics. Three or four years of study can really boost your job prospects and earning potential, and the UK’s universities are more than geared up to welcome disabled students. Disability advisors can help with getting assistive tech in place, work with lecturers and organise accessible classrooms to ensure you’re able to participate fully in the student experience – and learn something along the way! Funding is available for higher education students in the UK, including Disabled Students’ Allowances, so make enquiries before you apply. Search for suitable courses online at www.ucas.com.
www.enablemagazine.co.uk
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DISTANCE LEARNING You can learn from the comfort of your own home with an array of distance learning providers. Distance learning courses combine online lectures, podcasts, reading, Skype sessions, assignments and occasional classroombased work at weekends. The biggest benefit of distance learning is the fact that you get to work at your own pace, and you won’t have to worry about things like physical access or lack of understanding – the Open University, for instance, is the UK’s largest provider of higher education for people with disabilities, with 21,000 disabled people graduating through the OU in 2014/15, so you know that you’ll be supported throughout your course. Find out more at www.open.ac.uk. Other providers include the National Extension College (www.nec.ac.uk), Learndirect (www.learndirect.com) and the Open College of the Arts (www. oca.ac.uk), who offer a vast range of different subject areas – so there’s bound to be something that suits you. FUNDING AND SUPPORT One factor which puts people off furthering their studies is that of funding. However, there are ways to get support to help you boost your skills and qualifications. Disabled Students’ Allowances (DSAs) are available for students in England who have a disability. The support is based on your needs rather than your income, and helps to pay for the additional costs that come as a result of your disability. You can apply online at www.gov.uk/ disabled-students-allowances-dsas. Students in Scotland are also eligible, and can apply through SAAS (www.saas.gov. uk), the body which also covers tuition fees for FE and HE learners in Scotland. You may also be eligible for funding for part-time courses through different grant and bursary schemes. Always discuss funding options with the course provider before you sign up if finance is likely to be an issue. Schemes like the 24+ Advanced Learning Loan and Individual Learning Accounts for Scots learners are a good way of covering costs, but there are limitations attached.
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STEPPING STONES AT GLASGOW KELVIN COLLEGE Jennifer Power is a student at Glasgow Kelvin College, where she’s studying towards an NC in employability and iti enshi . ere e find o t ho she s getting on FOR SOME PEOPLE, college isn’t about academics – it’s just as important in terms of confidence and building vital skills that are needed in the workplace. Jennifer Power, has learning difficulties and health issues, which means she requires a bit of extra support in class. After finishing secondary school last summer, she enrolled in Glasgow Kelvin College’s employability and citizenship course. “I like the course because they’re improving my confidence, and personality in a way,” explains Jennifer. Annie Swan, Jennifer’s lecturer, says that the course has had a real impact on the 18-year-old. The one-year NC (level 3) course incorporates work experience placements, personal development classes, core classes in ICT, literacy and numeracy, as well as classes in subjects like media and drama to build confidence. “It’s about making the students more self aware, more confident, and realising the strengths they have and how they can improve, even if it is tiny steps,” Annie explains. “They can get better and better. We try to work with the other departments too on various projects – we have a cycling project, for instance, where we work with the sport department. Our students are integrating properly with the other students.” Jennifer has loved her year on the course – particularly one of her two work placements. She managed to secure a day’s work experience with the make-up department of the popular US drama series Outlander, which is filmed in Scotland. With the support of a member of the college team, she had an incredibly positive experience. “I learned how to do proper make-up, and I applied make-up on one of the students that worked there,” Jennifer says. “They gave me tips in applying for that kind of job. It was an amazing experience, I loved it. I also learned how to put pins in the wigs for the actors to use. It was a great day.” Jennifer hopes to apply for a level 4 beauty course next year, and has ambitions of working as a make-up artist in the future. Find out more about study options at Glasgow Kelvin College at www.glasgowkelvin.ac.uk.
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www.glasgowkelvin.ac.uk
ABILITY
dis
our focus is your equal right to further education
T: 0141 630 5000 E: info@glasgowkelvin.ac.uk A: 123 Flemington St, Glasgow, G21 4TD
Mental health
Disabilities
Homelessness
Young adults
Providing care, support and housing We provide specialist services across England for people with physical and learning disabilities, acquired brain injuries, mental health needs and those who have experienced homelessness. We help people to live as independently as possible and lead fulfilling lives whether through supported housing, residential care or floating support. Many services are registered with the CQC to provide personal care and support.
sanctuary-supported-living.co.uk 0330 1233 247 @SancSL
Supported Living
Sanctuary Supported Living is a trading name of Sanctuary Housing Association and Sanctuary Home Care Limited, both exempt charities.
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EMPLOY AUTISM With only 15% of autistic adults in full-time paid employment, charity Ambitious about Autism is calling on better support for children and young people in education, and transitioning beyond school and college to avoid the employment gap JUST ONE IN FOUR young people with an autism spectrum condition go onto further or higher education after finishing school. When you consider that approximately one in 100 children have autism, that’s a lot of young people missing out on the opportunities that further access to education can bring – in particular, employment. Only 15% of adults with autism are in full-time paid employment – a scary statistic. And it’s time that this changed. There are thousands of young people and adults with autism who are willing and able to get into work, but are sadly missing out on opportunities.
TRANSFORMATION “Employ Autism is our new campaign, and it’s campaigning to transform the employability of young people with autism by improving their transition from school and college into work,” explains Ambitious about Autism’s director of policy Kate Williams.
The campaign came about when Ambitious about Autism’s young ambassadors pointed out that, while the charity does great work in promoting inclusion and opportunities as an education charity, many young people with autism struggle when it comes to transitioning to the world of work. As a result, the charity will be working with education providers and employers to create a smoother, more positive transition process. Kate says: “We want to make sure that young people have the right skills and that workplaces are autism-friendly.” The charity will be working with education providers and employers to work towards three main goals: to get better careers advice for young people with autism; to help them get better access to work experience; and to create more opportunities for young people to develop their skills post-16.
AWARENESS Last year, the charity also launched its
Autism Exchange programme, working with the Department for Work and Pensions and HMRC to create work placements for young people with autism. In return, the charity trained up the teams on autism awareness, creating a lasting legacy from the placement. This year, the programme is set to run again with more government departments and Santander signed up to participate. “There was a piece of research that said we would save £9bn a year across the UK if we were to support people with autism to access work, which is huge,” Kate says. “The government has this focus on trying to halve the disability employment gap and a lot of the activity there seems to be around interaction with the benefits system, but we want to open up the other end of the debate, which is about creating really positive routes from school and college into employment, so we don’t have that issue of being out of work in the first place.”
i Find out more about Ambitious about Autism’s Employ Autism campaign by going online now, www.ambitiousaboutautism. org.uk/employ-autism. Online, you can sign up to show your support, share your experiences, get your school, college or employer to sign up or donate towards the campaign’s work.
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25/04/2016 14:21
Allianz wants to help create a better world for disabled people, and we’re backing our athletes on the road to Rio – how will you play your part?
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25/04/2016 16:34
Profile
INDEPENDENT LIVING:
Supported housing gives Zara her independence back Independence means different things to different people. It might be winning the job of yo r drea s going on holiday itho t yo r arents or arers for the first ti e or making that trip to the shops solo. Housing, however, is one area where independence is key, and there are lots of different ways to help you get there – as Sanctuary Supported Living tenant Zara Alexander found out AN IPSWICH WOMAN who lost the use of her legs following a stroke has reclaimed some of her independence following a move from residential care to a new supported housing scheme. Zara Alexander was one of the first residents to move into Sanctuary Supported Living’s (SSL) Avalon Court when it opened its doors at the end of October. The 45-year-old had moved from SSL’s Purplett House residential care home, where she had been living since 2014. After more than a year of receiving care from staff at Purplett House, Zara’s health and independent living skills had made a marked improvement, to the point she no longer needed fulltime care.
SKILLS As a result, she was able to move to SSL’s Avalon Court supported housing scheme, where she lives in a flat of her own. She can now administer her own medication, cook her own meals in her adapted kitchen (with assistance from her support workers) and even walk short distances in her own home. Zara also takes part in physiotherapy, speech and occupational therapy at an on-site rehabilitation centre.
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Although Zara still receives visits from SSL support workers, who are based on-site, her support hours have decreased from up to four visits a week to roughly one hour every other week.
HAPPY “I am very happy to be living at Avalon Court,” Zara says. “The support I have received has helped me regain my independence and it’s a wonderful feeling, but I also know staff are there to offer support if I need it. “Living at Avalon Court will enable me to fine tune all the things living at Purplett House helped me to achieve.” Zara is one of 14 residents at the fully occupied Avalon Court. Residents at the scheme have their own communal lounge on the first floor and share a ground floor with an adjoining extra care scheme. Shared facilities on this floor include an IT room, laundrette, meeting room, restaurant and even a hairdressing salon. SSL local service manager Katrina Jackson said: “In common with our other residents at Avalon Court, Zara has made great progress through one to one support and it’s been great to see her already achieving some of her goals and aspirations.”
About Sanctuary Supported Living You too can increase your independence with the help of SSL Part of leading UK housing and care provider Sanctuary Group, Sanctuary Supported Living (SSL) provides accommodation and support services to thousands of young people and adults across the country. Specialist, tailored support and accommodation are available for the homeless, people with mental health issues, physical and learning disabilities, teenage parents and their children, carers, people experiencing drug and alcohol addiction or domestic abuse. SSL also supports people to live independently who may require support services in their own homes.
Find out more about Sanctuary Supported Living’s services online at www.sanctuarysupported-living. co.uk, or call 0330 123 3247
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25/04/2016 15:41
Sport
rworth llan Butte at -A n o J t s li als Cyc silver med his took three as h 012 , and Rio. London 2 r on gold fo e sights set t up with th We caugh to find o t an e -servi e ing on track tt e how he’s g 016 for 2
THE ROAD TO RIO
JON-ALLAN BUTTERWORTH IN 2007, JON-ALLAN BUTTERWORTH was serving as an RAF weapons technician in Iraq when he was caught up in the explosion of an insurgent rocket attack. The Basra blast cost the young serviceman his left arm and ended his service duty in Iraq. Although it would severely impact on his personal life and military career, the explosion would also set him on the path to sporting glory. “Before my injury I didn’t know what the Paralympics were,” says Jon. “I hadn’t seen anything about them in the press, I didn’t know they existed. I’d followed the Olympics a little, but had no idea about the Paras. I didn’t even know what a velodrome was.”
a mere four months of losing his arm, when he attended a Talent ID day, an event dedicated to scout future Olympic and Paralympic talent. As the highest performing cyclist on the day, Jon was earmarked by coaches and had his performance logged in their system. He later caught the attention of professional cyclists during a Help for Heroes 350-mile bike ride. Unfortunately, his details had been lost in the system. When invited to re-test, Jon’s performance kick-started his Paralympic career.
TRANSFORMED Now a triple Paralympic medal holder after a successful first Games in 2012, Jon’s life has transformed through cycling. “I’m now ranked 11th or 12th for track sprinting in the UK, out of able bodied and disabled athletes,” says Jon. “I would never have begun competitive cycling without my injury. These things happen for a reason.” Jon first showed cycling talent within
HARD WORK “It hasn’t all been plain sailing,” says Jon. “It’s a lot of hard work and there’s been setbacks along the way. The military mindset has helped me a lot on my journey. Deep down, you have those ingrained strengths in your personality, and when you join the military you adapt to work as a team and become stronger.” Jon won three silver medals at the London Games, narrowly missing out on
gold, and is determined to come out top in Rio this summer. “Since I started I’ve won a medal pretty much every time I’ve raced,” says Jon. “I’m very fortunate in that respect. “Rio will be a big spectacle, but won’t beat a home crowd – it can’t. The home Games were huge, and no matter what the result of the race is, the home riders get cheered. Everyone’s on their feet cheering you on.”
DETERMINATION Throughout his journey as a cyclist, Jon hasn’t let his disability hold him back. Supported by a foundation of raw talent and sporting potential, Jon’s determination and mental dedication has powered him towards cycling success. “In my mind you have two choices – you could be down about your situation and do nothing, or you can work hard and chase whatever it is you want,” says Jon. “Life is about new experiences and trying new things, doing whatever drives you on. I’m lucky to be alive, and if you’re not making the most of life you’re just surviving – not living.”
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25/04/2016 14:19
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25/04/2016 16:26
Sport
THE PARALYMPIC GAMES
THEN & NOW
Tel Aviv
1948 Professor Ludwig Guttmann started using sport as part of his patients’ rehabilitation at Stoke Mandeville Hospital’s spinal injuries unit, inviting patients from other hospitals to compete. This was the first early edition of the Paralympics, which ran for years.
IMAGES COURTESY OF THE INTERNATIONAL PARALYMPIC COMMITTEE
1960 ROME, ITALY After 12 years, the rehab games went global, with the first official Paralympic Games taking place in Rome in 1960, with 400 athletes taking part from 23 different countries. While no longer aimed solely at war veterans, the event was just for people with spinal cord injuries. The Games took place shortly after the Olympics, which were also in Rome that summer – but unfortunately there was no accessible accommodation for athletes, who ended up having to be carried to their lodgings by the Italian army.
1968 TEL AVIV, ISRAEL Following a successful Games in Tokyo after the Olympics in 1964, the Paras went to Tel Aviv in 1968 after the Olympic host city of Mexico City was deemed too dangerous and inaccessible for disabled athletes. 1976 TORONTO, CANADA AND ÖRNSKÖLDSVIK, SWEDEN In the summer months, the Games headed to Canada, where amputee and visually impaired athletes were able to participate in the main Games. Later that year, the first Winter Paralympic Games took place in Sweden. It was the first Paralympic Games where several different categories of athlete could compete, and the Winter Games went on to take place every four years just like their summer counterpart. This changed with the 1994 Games, when the Winter Paralympics and the Winter Olympics took place two years after the Summer Games, with events taking place in even numbered years.
With jus tm the Para onths to go until ly off in Rio mpic Games kick de Janeir o, we tak a trip do e w to see ho n Memory Lane w what’s ch it all began an d an disabilit ged in the bigg y sportin est g even its roots in the 19 t since 40s
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Sport
1980 ARNHEIM, SWEDEN Shortly before the summer events, Paralympic founding father Professor Guttmann passed away – with the Games storming ahead, and perhaps more inclusive than ever before. Athletes with cerebral palsy were included, with the focus of the events shifted slightly towards athletic ability and sporting success rather than a means of rehab. 1988 SEOUL, SOUTH KOREA 1988 was the first time that the Olympics and Paralympics took place in the same city – a tradition which still stands today. The Games’ South Korean organisers put just as much effort into the parallel Games as the main Olympics, and the people of Seoul really embraced the spirit of the Games, with stadiums selling out. 1996 ATLANTA, GEORGIA The positivity from Seoul followed by a successful Barcelona in 1992 unfortunately fell a bit flat come Atlanta 1996. In Barcelona, stadiums across the city sold out – but the US organisers in ‘96 failed to attract crowds, while athletes complained of poor access in the Olympic Village and the city’s wider transport system.
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2000 SYDNEY, AUSTRALIA Following the poor feedback from Atlanta, our friends Down Under pulled out all the stops for the largest Paralympic Games yet – with over one million tickets sold. A huge 132 countries participated, with rugby and wheelchair basketball joining the sports line up. It wasn’t without its controversy though – after learning disabled athletes were included in the Games in 1996, Spain’s learning disability basketball team had their medals taken away after it was revealed that only two of their 12 players had a learning disability. 2008 BEIJING, CHINA Many mark Beijing as the Games that changed the Paralympic movement. As well as selling out venues, media interest soared in the Games and TV coverage saw a marked increase. This increase in media activity also saw a change in attitudes, with the mainstream taking an interest in disability sport. 2012 LONDON, 2012 We may be biased as it was a home Games, but London 2012 was the most successful Games to date. With Channel 4 upping the ante in terms of live coverage and Paralympians becoming household names, the public’s understanding of disability and parasport really grew.
2016 RIO DE JANEIRO, BRAZIL This September, the Games are heading to South America for the first time in their history, with Rio welcoming 4,350 athletes to participate in a record 22 different sports. There will be 528 medal events taking place – and Channel 4 have already vowed to broadcast over 500 hours of coverage during the Games’ 11 day run. It’s set to the best Paralympics yet – but how will ParalympicsGB fare? You’ll have to tune in to all the action from the Opening Ceremony on 7 September onwards to find out…
About the founder The Paralympic Games were founded by German-born British neurologist Professor Sir Ludwig Guttmann. Guttmann, who was Jewish, fled his native Germany at the outbreak of the Second World War to escape the Nazis, and went on to establish a successful medical career in England. Born in 1899, Guttmann studied at the University of Breslau and the University of Freilburg, and went on to become one of the top neurosurgeons in Germany. The Nazi party banned Jews from practising medicine, and so, in early 1939, he moved to the UK with his wife Else and their two children. By 1943, he was asked to establish the National Spinal Injuries Centre at Stoke Mandeville Hospital in Buckinghamshire, the country’s first specialist unit for treating people with spinal cord injuries. Guttmann’s work was different as he was one of the first medics to use sport as part of rehabilitation, particularly for injured servicemen and women coming out of the World War. He organised the first Stoke Mandeville Games on 28 July 1948, which over time grew, changed and incorporated competitors from other countries, eventually becoming the Paralympic Games as we know it today.
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Motors
The review:
FIAT 500X Mixing go-anywhere looks with city car driving manners, the Fiat 500X makes a lot of sense for those seeking a comfortable, capable crossover. Choose the right engine and trim and you’ll enjoy a cost-effective and well-equipped car that drives well, too. Alisdair Suttie took it out for a spin to see how it handles on the road
EQUIPMENT It’s best to avoid the entry-point Pop model and head for the Pop Star or Lounge. Yes, the Pop has air conditioning, cruise control and all-round electric windows, but it doesn’t have rear-parking sensors. You can add the optional Safety Pack that brings a reversing camera along with Lane Departure Warning and Blind Spot assistance. Stick with the Pop Star and you get dual zone climate control in place of air con, front fog lights and larger alloy wheels. We’d also recommend the Comfort Pack that includes keyless entry and ignition, electric lumbar support, a central armrest and variable boot floor that makes it easier to stow a wheelchair. The top level Lounge model has the Comfort Pack as standard, along with satellite navigation and Bi-Xenon headlights. Or you could opt for the four-wheel drive Cross Plus if you need off-road ability.
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INSIDE Thanks to the crossover style of the 500X, which blends small hatch size with the raised driving position of an off-roader, the Fiat is very easy to get in and out of. The driver’s seat adjusts for height, so finding the right driving position is easy, especially as the steering wheel also moves for reach and angle. It’s worth spending the extra for the Comfort pack to gain electric lumbar adjustment for added comfort. It’s a stylish looking cabin, with an uncluttered look. The downside is that a lot of functions are operated through the touchscreen, which is not always the easiest to navigate your way through. On the upside, all-round vision is good and the rear seats offer sufficient space for two adults. The boot is on a par with rivals’ in terms of space.
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Motors
MOTABILITY CUSTOMERS The Fiat 500X is available on the Motability Scheme, from £56.75 weekly rental and zero Advance Payment. For more information, head to www.motability.co.uk or call 0300 456 4566.
DRIVING There’s a choice of 1.4-, 1.6- and 2.0-litre petrol engines. We’d avoid the sluggish 1.6, which is the cheapest option, and instead head for the 1.4 MultiAir with 140bhp. It’s all you’ll ever likely to need for performance and it returns 47.1mpg average economy and 139g/km CO2 output. While those are not the most impressive consumption and emissions figures, the engine is peppy and willing, working well with its six-speed manual gearbox. For those seeking an auto transmission, Fiat’s nine-speed selfshifter is a delight but is only offered with the 2.0-litre turbodiesel motor in 140 or 170bhp forms, so it’s not a cheap option. An alternative
SUMMARY is the six-speed dual-clutch automated manual gearbox coupled to the 1.4-litre 140hp petrol engine. Soft-set suspension delivers a wellcushioned ride in town and on the motorway, and the 500X is refined too. There’s some lean in bends, but as this is not a hot hatch it’s easy to forgive for the mix of comfort and quiet the Fiat provides. The engines are strong and hushed, except for the base 1.6 petrol that has to be worked hard to offer its best.
There’s more to the Fiat 500X than good looks and a bit of off-road attitude. It’s comfortable, capable and refined. Avoid the base trim and engine options and it does all you could ask of a small crossover.
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Motors
NICOLAS HAMILTON There are pros and cons to having a famous older brother – but these days, Nicolas Hamilton is emerging from Lewis’s F1-shaped shadow to prove he’s a top driver in his own right. Twenty-four-year-old Nicolas, who has cerebral palsy and now races in the British Touring Car Championship, tells Enable about his career behind the wheel
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25/04/2016 14:17
Motors
I’VE FOLLOWED MY brother for a long time. When Lewis got into motorsport, it was a family thing. Basically, I grew up at a race circuit. I was constantly at races and seeing Lewis race. It was only natural for me to want to try it. But, obviously, having my condition [cerebral palsy], I didn’t know if it was possible. I had a go on a go-kart at the age of seven, and that ended quite badly, with a crash in a car park due to not being able to brake because my legs aren’t strong enough. It was pretty much a no-go. So I carried on following Lewis, I went to school; I thought I might do something in business or management. And then I found a love for online gaming. I loved playing games online, and I thought if I can’t have a career in the real world,
know anything about driving for real. There are so many different characteristics you need to think of in a car. It’s about warming up the tyres, preparing the car before you go for qualifying laps or racing laps. That’s the sort of stuff I didn’t really know at the time. It was tough, but it was interesting. I did pick it up pretty well. It made me more focused for the future. The hardest challenges would be preparing to race. That goes from fitness for my condition to getting a race licence from the authorities and being treated as an equal. The first time I decided I wanted to race, I was in a wheelchair. I’d been in a wheelchair for five years, hadn’t walked much and my legs were deteriorating. To race, you need
Training was really difficult - but if it was easier, every man and his dog would be at it!
AS TOLD TO LINDSAY COCHRANE
I’ll have one in the virtual world. I had a good career online – and it was Lewis’s idea to try it for real. That’s where it started, at the age of 19. My first time in a car was at Silverstone in a Renault Clio. I didn’t
a very strong body, both legs and torso. Training was really difficult – trying to turn your condition from a disabled condition to an able-bodied condition, to be able to race, is hard. But if it was easier, every man and his dog would be at it! The high point of my career? Most drivers would say it was this race, or when I won that, or when I achieved this much. I wouldn’t say I have a high point in my career. I see it more as a journey. From when I was born and told I wouldn’t walk to now, sitting here, telling you that I’ve achieved so much as a racing driver, and these are the people I’ve reached and inspired – the whole journey. For me now, it’s not about me. It’s about using my story and what I do, what I’m about, to help others and inspire them to try something new.
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Life
product roundup UCCELLO KETTLE
FLEXYFOOT
There’s nothing we Brits love more than a good cuppa – and it just got easier thanks to the Uccello kettle! The effortless ‘power-steering’ pour action and light weight of this kettle makes getting a brew worry-free for people who have difficulty with grip or weakness in their hands. The ‘tilt and pour’ action means you avoid lifting a heavy kettle, and the water goes straight into the cup – no spillages. Get it: Ability Superstore, £46.79 (www.abilitysuperstore.com)
A new type of rubber ferrule for walking sticks, canes or crutches, Flexyfoot reduces pain and improves confidence in walking by not only bending to grip the surface you’re walking on but by absorbing the shock of impact through the hands, wrists and shoulders. Get it: Flexyfoot, from £10.00 (www.flexyfoot.com, 0800 0285 888)
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NITRO MINI ROLLATOR The latest addition to the Nitro family by Drive Medical, the Nitro Mini is designed for people at 5ft2 or under. The lightweight aluminium frame, removable zipped storage and flexible backrest make this a handy walking frame – and it can be easily folded to store away in the car or on public transport too. Get it: Manage at Home, £210 (www.manageathome.co.uk, 0800 910 1864)
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AMPLICOMMS POWERTEL 96
SOCK-AID
If you’re hard of hearing, Amplicomms’ latest release is just the phone for you. The PowerTel 96 has high amplification, impressive sound quality and premium hearing aid compatibility. The ringer can be turned up to the same level as a pneumatic drill too! Get it: Amplifon, £79.99 (www.amplifon.co.uk, 0800 231 6422 )
The Sock-Aid is a great device that makes getting your socks on and off much more straightforward – ideal if you have problems bending or stretching because of arthritis or mobility problems. Simply place your sock on the Sock-Aid, put it on the floor in front of you and slide in your foot. The reach stick will let you pull the sock straight onto your foot. Get it: Spring Chicken, £32.99 (www.springchicken.co.uk, 0800 980 3961)
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25/04/2016 18:22
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DO YOU HAVE SPEECH OR MOVEMENT PROBLEMS? WOULD YOUR LIFE BE IMPROVED BY THE PROVISION OF A COMMUNICATION AID TO HELP YOU LEAD A MORE INDEPENDENT LIFE? Then perhaps The Sequal Trust can help
We operate throughout the UK, fundraising to provide speech aids for disabled people of all ages.
Our new range of practical feeding bibs are perfect for meal times and for those looking for something a little more avant-guard check out our super smart dining bibs OFF 1ST ORDER USE CODE
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Sequal aims to provide speech aids to those people who cannot afford to purchase such very vital equipment, to allow them to lead more independent lives and especially when statutory bodies are unable to help.
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Interview
The Disabled Chef Meet James Coke, The Disabled Chef; a food-loving blogger who educates on the importance of hearty, home-cooked meals and doesn’t let his MS stand in the way of his love of cooking or lust for life JAMES COKE LOVES his grub. Lancashire hot pots, Burmese curries, beef with garlic and ginger spices – his extensive repertoire of homemade dishes continues to expand and inspire followers on his website, The Disabled Chef, every day. With high-quality ingredients at their heart, James’ meals encourage people to eat well and share the chef’s own passion for great home-cooked food. “I love a proper cottage pie,” says James, as part of a mouth-watering list of his favourite dishes. “You know, the sort of cottage pie you would sit down and eat with your family, everyone around the same table. I love Mediterranean food too – octopus, squid... oh and I love English mustard. I’d take a jar of that with me on holiday, I love the stuff.”
INFATUATION James’ infatuation with cooking began at school in the late 70s and early 80s. While most boys his age were opting for woodwork and metalwork, James found himself drawn to home economics. His mother’s own cooking inspired him to pursue it as a subject, but he admits home
ec back then was a far cry from what is available to budding chefs nowadays. “Cooking wasn’t sexy back then,” says James. “Nowadays you have Jamie Oliver, Heston Blumenthal and those sorts of people cooking on TV, but back then there were no celebrity chefs.” Despite his love for cooking, a hotel management course at college soon made James realise that not all facets of the hospitality industry appealed to him. He left to work in advertising and various other jobs, but would return to his first love after being diagnosed with multiple sclerosis (MS) in 1997, aged 32. “I started getting symptoms at 20, and so when 12 years later the diagnosis came, it was a bit of a relief,” says James.
“I decided to start up The Disabled Chef because I have MS, but I still have to eat”
“The diagnosis was like being hit with a sledgehammer, but I decided to start up The Disabled Chef because I have MS, but I still have to eat.” James was also focused on making every penny in his food budget count, as at the time of diagnosis he was largely dependent on benefits. He stocked up on ingredients in markets and frugally stuck to his budget, which managed to reduce his food bill by over a quarter.
BATTLES Although his MS presents him with daily challenges, and he now relies on a wheelchair for mobility, James is determined not to let it affect his love of food or his inspiring outlook on life. “You should embrace the disease, but never love it,” says James. “You hate it, but if you sit there and let it envelop you, you lose the battle. At the end of the day, you need to be able to look at yourself in the mirror and say, ‘You’ve done well today, son.’ The world is 4.5 billion years old and we’re only here for a nanosecond, so play the hand you’ve been dealt and play it well.”
i Interested in trying some of James’ recipes and reading his cooking blog words of wisdom? Find him at www.thedisabledchef.com.
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Care
CARE BY THE CLOCK: PUTTING AN END TO 15-MINUTE HOME CARE VISITS
CASE STUDY: RICHARD STAPLEY Richard, 55, from Thurnby in Leicester, has MS and uses a wheelchair for mobility. In recent years, his care package has changed – but it’s still not enough to meet his needs
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At present, carers visit Richard at home four times a day. He has a morning visit which lasts one hour and 15 minutes, a mid-morning visit at 11am which lasts half an hour, a half-hour lunchtime visit and an evening visit at 9pm which lasts 45 minutes. Previously, the middle two visits lasted just 15 minutes each – but even the increased time isn’t enough, as he often has to skip lunch so his support worker can get everything done in the
30-minute lunchtime visit. “After being diagnosed with MS in 1993, I looked after myself until 1999 when my condition deteriorated and I needed help,” Richard explains. “I was advised to go to a nursing home instead of going straight home, which I did for three months from January to April 2013. Since then, I have had four visits a day, first with two 15-minute visits at 11am and 1pm, but now they are half an hour.”
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Care
Since its launch in 2013, Leonard Cheshire Disability’s Make Care Fair campaign has been calling on local authorities to give servi e sers a ess to s ort hi h eets their needs and t an end to - in te ying visits for ersonal are. e fo nd o t ore a o t ho the a aign is going and hat still needs to hange for disa led and elderly eo le a ross the UK
T
ake a moment and think about how long it takes you to get ready in the morning. To get out of bed, take a shower, get changed, deal with your hair and makeup if you feel that way inclined, make your breakfast, catch up on the news and get out the door. Disability charity Leonard Cheshire did some research which found that the average person needs around 40 minutes to get through their morning routine. And yet councils across England are commissioning 15-minute home care visits to help disabled and elderly individuals with personal care like this. “One of our big concerns is that not only do you not have enough time to support that person, but you don’t have time to have a conversation with them,” says Alice Mitchell-Pye, policy and research manager at Leonard Cheshire Disability. “For many people who receive home care, that might be the only person they see all day. It’s hugely distressing if that person doesn’t have time to talk to you. And it’s also distressing for the care worker – they want to do a great job.”
FLYING VISITS In 2013, after receiving reports from disabled people that councils were using 15-minute slots to help with tasks like washing, dressing and preparing meals, Leonard Cheshire issued a Freedom of Information request to councils across
While the half-hour visits are better, it’s still not ideal. Richard lives alone, but his mum is 10 minutes away and comes to visit as often as she can, bringing something to eat with her – but this isn’t every day. “There was no time to get anything done in the 15-minute visits,” Richard adds. “I was put to bed at 11am and gotten out of bed at 1pm in such a rush, there was no time to take me to the
England to get a better picture of what was going on. This went on to form the basis of the Make Care Fair campaign, calling on councils to stop commissioning ‘flying’ visits for personal care. Since the launch, the charity has issued two more FOIs. The last survey found that 64 councils aren’t using 15-minute visits for personal care – a big step forward. Since the campaign started, 46 councils have changed their policies too. With these short visits, in some cases, individuals were having to choose between having a cup of tea and going to the loo. Fortunately, Leonard Cheshire aren’t the only ones to realise this isn’t good enough for anyone. “A lot of councils are commissioning perfectly reasonable 15-minute visits to check in and see if someone is safe and well, and we would agree that that’s OK,” Alice explains. “When the Care Act came into force last year, in the guidance, the Department of Health was very specific that 15-minute visits were not appropriate for personal care. Subsequently, NICE issued guidance on home care which also said that 15-minute visits are only appropriate in extremely limited circumstances – for medication, welfare or if they’re part of a much bigger package where there’s longer visits.”
visits are still taking place in some local authorities – 18 out of England’s 105 local authorities said they were still using 15-minute visits for personal care. Leonard Cheshire are calling on individuals to share their experiences of home care, to let decision makers understand how important social care is and why funding needs to increase for these vital services. “We would really like every council to follow suit and stop commissioning flying visits for personal care, and that people who need help with those kind of tasks are really getting 30 minutes as an absolute minimum,” Alice says. “We want better funding. We want to see people being more empowered to choose what they want to get from their support and being valued and having dignity – being treated with compassion and getting the support they want rather than just what they’re given.” Head to www.leonardcheshire. org now to share your home care experiences, have your voice heard and make a difference for service users across the UK.
CHANGE Budget cuts and lack of resources are major contributing factors as to why these
Leonard Cheshire Disability www.leonardcheshire.org 020 3242 0200
i
toilet, prepare food, nothing. “The half an hour visits are much better, the carers have more time to put me to bed and wake me up and get me settled in my chair. I am treated more gently rather than being rushed. At the moment, there still isn’t time to prepare and give me food or take me to the bathroom so my routine is very much the same.”
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Voices
THE GAME BEGINS tim rushby-smith With the Paralympics looming, Tim Rushby-Smith takes a look at his own experience in disability sport Eleven years ago, I was taken to the National Spinal Injuries Centre to begin the process of adjusting to my new circumstances. I had sustained a spinal cord injury and faced the daunting process of coming to terms with my paraplegia. The road back to ‘normal’ can be a tough one. As well as the physical challenges and the new skills to learn, many people feel like their entire picture of the future has been wiped out. For me, every image in my mental photo album of things I hadn’t done yet seemed to involve my legs working; walking, climbing, running, playing sport. Especially playing sport.
CRUSHED Cards on the table time: I am a lifelong supporter of The Arsenal (the only club that gets it’s own ‘The’), and my love of
i
football included playing it. Badly, but playing nonetheless. I also played other sports, including tennis and ultimate Frisbee. I remember the first football match that I watched post-injury. I was still in the spinal unit, and I felt crushed by the experience. Here were 22 men who took for granted the simple pleasure of putting one foot in front of the other. I knew there were ‘wheelchair sports’, but it seemed like such a compromise. Then, like many patients before me, I ended up in the archery gym, and everything changed. Sadly demolished due to the necessary expansion of the hospital, this unassuming building had the feel of a village hall, complete with parquet floor and table tennis tables folded in the corner. It also had archery targets at one end, and a number of wooden boards adorning the walls, honouring previous sporting achievements, a little clue to the pedigree of the place. Built as part of the world’s first spinal unit in the 1940s, the hall I found myself in was the cradle of the Paralympic movement.
ESCAPE I spent many an hour in the gym with a bow or a bat in hand. Sport is a great way of getting people to do the key exercises so important to rehabilitation, while making the process enjoyable. It was a great escape. I found that once I was playing, it was simply a case of making the most of what I could do, not missing what I couldn’t. Eleven years later, I still play tennis (not as much as I’d like to) and basketball (more than my body tells me I should), and now I share my passion for participating in sport with my children. It’s not just something you watch, it’s something you do. The health benefits are obvious, but participating in sport is also a way for disabled people to show the world that we play a full and active role in society, just like everyone else. As we near the opening ceremony for the Paralympics in Rio, I find myself once again reflecting on the cheerful atmosphere of the little oasis that I found in that modest hall and its enduring global legacy, all built on the simple pleasures of sport.
Looking Up by Tim Rushby-Smith is available from Virgin Books
www.enablemagazine.co.uk
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When everyone is welcome, anything is possible At Barclays, we are always seeking to find new and innovative ways to remove barriers in how our customers with disabilities access our services, but we also want to help other businesses be more confident in how they meet the needs of their customers too. That’s why we’ve launched a new portal, based on our own experiences, which we hope will provide practical tips for UK businesses helping them to become more inclusive. Living in a diverse society, the business that caters for the needs of as many customers as possible will be the one most likely to not only survive but flourish. To find out more visit barclayscorporate.com/accessibility
Barclays Bank PLC. Authorised by the Prudential Regulation Authority and regulated by the Financial Conduct Authority and the Prudential Regulation Authority (Financial Services Register No. 122702). Registered in England. Registered No. 1026167. Registered Office: 1 Churchill Place, London E14 5HP. Created 04/15. MCT345.
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Spotlight
THE WALKAWAY POUND Up and down the country, companies are failing disabled people by not making simple adjustments to their products and services to make them more accessible – and this needs to change. We find o t ore a o t the good practice that’s out there, and how other organisations can get on board to provide a more inclusive service for all
THINK OF THE LAST TIME you had a day out and had a totally seamless, accessible experience. One which didn’t require forward planning or asking for help – just plain sailing, from A to B. Chances are, most of the time, you’ll experience a bump in the road. From transport to stepped entrances, ignorant staff to poor signage, the UK’s high streets sadly aren’t as accessible as they could be. And businesses are missing out as a result. Research carried out by the Extra Costs Commission and Business Disability Forum last year showed that three out of four disabled people had left a business and taken their custom elsewhere because of lack of disability awareness
and poor access on the part of the service provider.
LOSING OUT From poor physical access to unhelpful staff, inaccessible materials to a complete lack of understanding, businesses in retail, hospitality, telecommunications, banking and more are losing valuable customers with a huge spending power – all because they haven’t made some often straightforward adjustments to their services. “There is a really significant opportunity for businesses that get it right to generate really considerable customer loyalty that, in turn, supports increased revenue,” explains George Selvanera of Business Disability Forum, the not-for-profit member organisation which supports businesses in employing disabled people and welcoming disabled customers. “About £1.8bn a month is being lost as disabled customers and their family and friends move from one business to another – that’s a really significant amount of revenue.” This figure, dubbed the ‘Walkaway Pound’ by BDF, is huge – and it’s difficult to understand why businesses aren’t thinking about inclusion. Poor access can be frustrating, embarrassing and inconvenient – especially as, under the Equality Act, disabled people have the same right to access goods and services as anyone else. “At my local cinema, wheelchair users have to sit in a special enclosure right in front of the screen,” says Dan, a
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Spotlight
MAKING CHANGE For every bad experience, there are companies who are taking notice of how valuable disabled people are as customers, and changing their services accordingly. Part of the reason behind the Walkaway Pound report was that BDF members wanted to know the business case for making adaptations to their services – and the interest in the research from a cross-section of industries, from retail to transport, proves that there’s a real desire for change in this area. “Businesses need to be driven by the experience of disabled people themselves,” George says. “There is some really great practice out there – BT have a whole reference group of disabled customers who act as a sounding board for their ideas and innovations. Sainsbury’s involved a group of customers with a range of different types of disabilities to go through their store, or a template store, and say, ‘That’s at the wrong height, that should be there.’” Across the country, companies are introducing services like this. High street bank Barclays have been going the extra mile to take on the mantle of the UK’s most accessible bank, recently
THE WALKAWAY POUND:
KEY FINDINGS* 3 out of 4 disabled customers have taken their business elsewhere as a result of lack of disability awareness.
70% of people had left a high street shop.
Half of survey respondents had left a restaurant, pub or club.
Twice as many disabled people (26%) as parents or carers (13%) had left a phone or internet provider due to access.
piloting new smartphone-based technology to make sure customers who need extra assistance get what they need. “They’ve been piloting an initiative around Beacons technology,” George says. “It enables people with disabilities or other kind of adjustment requirements to register using their iPhone what their specific requirements are – not so much about their disability but more the impact of the disability or condition they might have. For instance, you walk into the bank and it’ll alert the staff in the branch to the fact that George has arrived and he needs you to speak into his right ear. It enables this very mainstream service experience.”
ACCESS FIRST The bank has also introduced talking ATMs, and provides a BSL interpreter service via iPads in-branch, an initiative that’s also being piloted by retailer Sainsbury’s. The Royal Bank of Scotland are also taking basic banking services into people’s homes if they’re unable to make it into a branch or find online or telephone banking difficult, while Enterprise Rent-a-Car will deliver the car direct to the customer if they can’t make it to their offices. And it makes sense that businesses are making changes like this and incorporating accessible features into their mainstream services – not only because of legal frameworks and responsibilities, but as a rapidly aging population, more and more people are acquiring disabilities and need extra support. “There’s a long, long way to go, but equally there’s a lot of good practice out there,” George adds. “The ones that I think will always be the most successful and sustainable are the ones that are very much grounded in the experience of people with disabilities themselves. Those businesses that get it right? They’re likely to be more successful into the future.”
* THE WALKAWAY POUND REPORT, EXTRA COSTS COMMISSION AND BUSINESS DISABILITY FORUM (2015)
wheelchair user from Hitchin. “It’s behind a low wall and a few feet above and to the side of anyone you go with. I recently discovered that at my local Odeon, I can sit right next to my girlfriend, who also gets a much nicer seat at the back of the theatre. It’s 10 minutes further to drive, but needless to say I haven’t been back to the other cinema since.” “I have been a wheelchair user since diving into a swimming pool as a teenager and breaking my neck,” explains Jonathan from Cheadle. “Recently I had problems accessing a local restaurant and pizza takeaway. I ended up sat at the door of both premises because of the poor facilities. If they had just bought a portable ramp, access could have been easily solved.”
i Read the full Walkaway Pound report online at the Business Disability Forum’s website, www.businessdisabilityforum.org.uk. For more information, please email enquiries@businessdisabilityforum.org.uk.
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Advertising feature
Barclays means business about accessibility At Barclays, we know how important access is for our customers – which is why we’re launching free online resources to help other businesses become more accessible too 1
Barclays polled 500 SME business owners, between 19 - 26 February 2016. The report is available at barclayscorporate.com/accessibility. Contract required for Business users of SignVideo app
2
MAKING IT EASIER for a Barclays customer with a visual impairment to use his debit card led us to make a series of design improvements that are now a popular choice in our personalised debit card range. Options for our high-visibility debit cards, designed with input from the RNIB and British Dyslexia Association, now include high-contrast colours, directional arrows and tactile notches.
something which is easier to read. We’re still listening and continually improving what we do but recognise that the invaluable insight we’ve gained along the way could also help other businesses. Research we commissioned recently shows that 77% of UK SME’s (Small and Medium sized Enterprises) would like advice on how to make goods and services more inclusive while 83%
17%
The number of UK business owners who said they don’t know where to start or what adjustments would need to be made for disabled customers1 In fact the inspiration behind many of our accessible products and services has been listening to our customers and community partners who have built our understanding of what matters most. The result has been better services and increased choice for disabled customers, but by thinking and acting inclusively, we’ve also created better outcomes for all. For example, our ‘high-vis’ cards are now a favourite of many customers, because everyone benefits from
say their products and services are not designed to be accessible to all customers1. Yet people with disabilities represent a considerable consumer market, so it makes good business sense to take another look at where accessibility can be factored in to websites, premises and products. If not, customers will simply take their custom elsewhere. ‘Making Your Business Accessible’ is an online collection of resources, which shares our accessibility journey and
examples from other forward-thinking businesses, with practical tips and tools which we hope will help other organisations, and enable great ideas to be shared. We know at first hand the value in businesses exchanging best practice. The tactile notches on our high-visibility debit cards, for example, is a design feature often used in hotel room key cards. It’s our belief that the more businesses can work together, the greater the opportunities we have to continually move towards a society that is accessible to all. We’re determined to achieve greater inclusion, and look for ways to increase benefits for all. When we worked with the supplier of ‘SignVideo’ to develop our in-branch instant interpretation service for BSL users, we wanted to make sure that the app was built in a way which could be easily procured by other businesses too – so now it’s on the App Store2. Being the first bank to introduce ‘Talking ATM’s’ was another way to inspire change in our industry, and to encourage others to learn – as we have – that becoming inclusive leads to innovation that benefits everyone. Barclays aims to be the most accessible and inclusive organisation in the FTSE 100
i For information on how to make businesses more accessible visit Barclayscorporate.com/accessibility If you want to know about Barclays’ accessible services for customers, visit Barclays.co.uk/accessibility, pop into any branch, or phone us (calls welcome by Text Relay and SignVideo)
@BarclaysAccess
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Life
The diary MAY •THE13-14 BIG EVENT EventCity, Manchester www.motability.co.uk 0800 953 7000 Motability’s two-day Big Event is a must-visit for anyone wanting to find out more about their mobility options. Held entirely indoors, there will be over 100 cars on-site from 27 different manufacturers, over 40 scooters and powered wheelchairs to try out, adaptations from a range of different companies and over 25 wheelchair accessible vehicles to try out too. You can also catch up with the Motability team to find out more about the Scheme and how to get involved. 21-21 MAY •LIMBPOWER GAMES Stoke Mandeville Stadium, Aylesbury www.limbpower.com 07502 276 858 The LimbPower Games give people with any form of limb impairment the chance to go along and try out a range of adapted sports at the home of the Paralympic movement, Stoke Mandeville. This year, you can try out archery, basketball, tennis, swimming, athletics and cycling, to name but a few. New for 2016, you’ve also got Nordic walking and bespoke fitness sessions.
•MOBILITY ROADSHOW 26-28 MAY
Silverstone, Northants www.mobilityroadshow.co.uk 01332 810 007 For the first time in its 30-year history, the Mobility Roadshow is taking place at the iconic Silverstone racing track. Head along to find out about accessible vehicles, adapted driving controls, products, wheelchairs, cars and the organisations that can help you with all your mobility needs and more.
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KIDZ TO ADULTZ EXHIBITIONS
THROUGHOUT JUNE •THEDATES AUTISM SHOW London and Birmingham www.autismshow.co.uk 020 8882 0629 The Autism Show is back at London’s Excel (17-18 June) and Birmingham’s NEC (24-25 June). Head along to hear from the UK’s leading autism professionals, discover hundreds of products and meet with other parents, teachers and clinicians. Don’t miss the Manchester date at EventCity in July either. 9 JUNE •KIDZ TO ADULTZ SOUTH Rivermead Leisure Complex, Reading www.disabledliving.co.uk/Kidz 0161 607 8200 This free event is all about children and young adults with disabilities, with a host of exhibitors on-hand offering advice, information and services to
make life easier for them, their families and the people who work with them. At the Reading date, you can expect over 120 exhibitors covering everything from mobility to funding, along with free seminars for parents and professionals. Register for free visitor tickets now. 25 JUNE •MENCAP NATIONAL ATHLETICS
CHAMPIONSHIPS
Dorothy Hyman Athletics Stadium, Barnsley www.mencap.org.uk 0207 696 5574 Mencap’s 2016 National Athletics Championships will be taking place this June in Barnsley. The event gives people with a learning disability the chance to compete in a range of track and field events – and maybe even pick up a medal or two along the way! Get online for more details. The closing date for entries is Friday 3 June at 3pm.
If you have an event coming up in July or August, email us the details to diary@enablemagazine.co.uk
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Kidz to Adultz Wales Thursday 7th July 2016 House of Sport, Cardiff 9.30am – 4.30pm A FREE event for children & young adults with disabilities and additional needs, their families, carers and the professionals who support them. Children Welcome
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For Visitors Free Entry Tickets or more information info@disabledliving.co.uk www.kidzexhibitions.co.uk
0161 607 8200
Dates For Your Diary •Kidz to Adultz South – 9th June 2016 - Rivermead Leisure Complex, Reading •Kidz to Adultz Scotland 15th September 2016 Royal Highland Exhibition Centre, Edinburgh • Kidz to Adultz up North 17th November 2016 EventCity, Manchester •Kidz to Adultz in the Middle – 16th March 2017 Ricoh Arena, Coventry
Established in 1897, Disabled Living is a charity registered with the Charity Commission for England and Wales. Registered Charity number 224742
Kidz to Adultz South Thursday 9th June 2016 Rivermead Leisure Complex, Reading 9.30am – 4.30pm A FREE event for children & young adults up to 25 years, with disabilities and additional needs, their families, carers & the professionals who support them. Children Welcome Free Entry Accessible Parking Over 100 Exhibitors providing Information on: ●Funding ●Seating ●Beds ●Mobility ●Bathing ●Sensory ●Accessible Vehicles ●Transition ●Education ●The Care Act ●Communication ●Wellbeing ●Sports/Leisure, FREE CPD Seminars and much more... Seminar Sponsors
For Visitors Free Entry Tickets or more information info@disabledliving.co.uk 0161 607 8200 www.kidzexhibitions.co.uk
Dates For Your Diary •Kidz to Adultz Wales – 7th July 2016 – House of Sport, Cardiff •Kidz to Adultz Scotland 15th September 2016 Royal Highland Exhibition Centre, Edinburgh • Kidz to Adultz up North 17th November 2016 EventCity, Manchester •Kidz to Adultz in the Middle – 16th March 2017 Ricoh Arena, Coventry
Established in 1897, Disabled Living is a charity registered with the Charity Commission for England and Wales. Registered Charity number 224742
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Interview
DIFFERENCE “I was on my way to work and I’d been having a chat with a person who had
Cherylee admits. “We’re looking for businesses to support us. The government isn’t looking after our disabled peers, so should we look after our own? As we become more prominent in society, you can’t ignore us. I feel like this government is making us go backwards in terms of how disabled people are viewed. Our fight is mainly to get out of the house and be part of a society.”
PIC: COURTESY OF ITV
TRIPLE C – standing for the Creative Confidence Collective – is an exciting new user-led drama project specifically for disabled people in Manchester, masterminded by Coronation Street actress Cherylee Houston. Working with the Royal Exchange Theatre and Lancasterian School initially, the team will be delivering a range of workshops to help boost the confidence, creativity and prospects of local people with disabilities.
BEGINNINGS Cherylee, who has Ehlers-Danlos syndrome, started her own acting career in youth theatre, and credits it with
“What’s so sad at the moment is that disabled people are going to have to learn to fight, learn to be vocal about their needs, otherwise their lives will be ruined”
Cherylee Houston: PUTTING DISABILITY CENTRE STAGE Coronation Street star Cherylee Houston tells Enable about her exciting new project, opening up opportunities for disabled people in Manchester
contacted me, about the difference a drama workshop I’d done with her had had on her life about 15 years ago,” explains Cherylee. “I started thinking, with all the cuts that are going on, that would be a useful thing to have – drama workshops that get people out and learning new skills.” Over the summer, Triple C will be running a summer school, with workshops and classes starting in September. The first run of Royal Exchange youth theatre workshops will focus on the subject of identity. They’re hoping to, over time, be able to offer workshops for people of all ages and abilities, with some disabilityspecific sessions, such as learning disability or autism. In the meantime, Cherylee, who plays Izzy Armstrong in the popular ITV soap, is working with her team to secure the finances to make the project a reality, covering things like transport and staffing. “Our struggle is the funding really,”
taking her to the point she’s at today. “I always knew I wanted to be an actor, and as soon as I was old enough, I went to youth theatre,” she recalls. “That changed my life. I had the best, incredible workshop leader who took us to see plays that were really cutting edge at the time. You were saturated in learning.” But, she points out, theatre groups aren’t just for people who want to act for a living. For Cherylee, the main drive of Triple C is to build confidence and develop opportunities. “We’re very much at the start, and we’re looking at funding for the first six months,” Cherylee adds. “But we want to be an organisation that people go to for access. Theatre is incredible. It gives you ownership, confidence, a sense of identity and who you are and what you’re worth. What’s so sad at the moment is that disabled people are going to have to learn to fight, learn to be vocal about their needs, otherwise their lives will be ruined.”
i To find out more about Triple C and how you can get involved, email triplecmanchester@gmail.com.
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Offer ends 27th May 2016.
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Life
THE DEPTHS OF SHERWOOD Follow in the footsteps of Robin Hood by taking a trip to Sherwood Forest, where you can relax and enjoy the incredible Center Parcs complex. The family-fun centre in sprawling woodland has considered everything when it comes to disability access – you can download an accessibility document on every part of the park via their website outlining ramp access, volume of noise and who to ask for help in each location. The biggest advantage of this is that it allows you to plan your trip in advance to ensure the greatest comfort for you and your loved ones. Using the detailed documents you can map out your days within the park and will know what to expect at every turn. Being out in the woods, surrounded by family and able to enjoy water parks, ten-pin bowling and other activities is a fantastic staycation opportunity. Find out more at at www.centerparcs.co.uk.
ACCESSIBLE BRITAIN:
WHERE TO STAY IN THE UK If the stress of heading abroad is a little too much, or the cost a bit too steep, why not take advantage of the beautiful UK countryside and have a staycation in good old Blighty? Here, we pick some of the best accessible pockets of Britain for you to escape to
CANAL LIFE Here to realise your Rosie and Jim dreams is CanalAbility, a company dedicated to facilitating canal boating trips for disabled would-be sailors. Boats are available to hire for day trips, short breaks or longer holidays so you can cruise the UK’s network of canals and enjoy the fantastic British countryside and local wildlife. CanalAbility boats have ramps, lifts, hoists and remote steering to allow you to act as captain and steer the boat onward. It’s not all about the countryside either, as you can even take your canal boat into London to experience the bright lights of the big city by boat. You can cruise through Regent’s Park and London Zoo, then berth overnight without having to pay London prices for accommodation. If you’re looking to get away from it all, the picturesque landscape outwith the city limits can be explored at a leisurely pace. Find out more at www.canalability.org.uk.
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LOVELY LINCOLNSHIRE If one or more of your family has special needs or autism, The Thomas Centre is an idyllic escape in the country. The centre has beautiful farmhouse and bungalow accommodation in Lincolnshire and is surrounded by wonderful areas of natural history, nature trails and bird watching hotspots. It’s also near to one of the largest seal colonies in the UK, Donna Nook, so wildlife fans can head down to catch sight of some new seal pups. Local beaches provide guests with the opportunity to enjoy the seaside with their families on large stretches of open sand that aren’t busy with tourists. If guests don’t feel like they want to venture off-site, there’s a range of facilities at the Thomas Centre base for visitors to enjoy such as a swimming pool, private gym and outdoor play park. Head to www.thethomascentre.co.uk now.
HAVEN IS A PLACE ON EARTH Nothing says ‘British holiday’ more than a good old-fashioned caravan trip at the seaside. At Haven, static caravans are much more accessible than your average pokey mobile home. They welcome registered assistance and guide dogs too, so there are fewer concerns about whether your fourlegged friend can join you on your trip. A team of specially-trained Haven staff are on hand to tailor trips for visitors, whatever their disability, and are aware of the various complex needs faced by customers. Calling ahead will allow the advisors to adjust your holiday to suit your individual requirements. Aside from their beautiful static caravans, Haven also has excellent on-site facilities including swimming pools and activities for all the family. Head to www.haven.com/ enable to get a fantastic discount on your next break, and to find out more about accessibility at the group’s parks.
A BICYCLE BUILT FOR TWO A tandem wheelchair bicycle is a wonderful way to explore Brighton and Hove. Famous for its liberal nature and traditional British seafront promenade, Brighton is also incredibly accessible for people with a variety of disabilities. Duet Wheelchair Tandems can be booked on the promenade and you’ll need a strong-legged cycling assistant to power you along towards Hove Lagoon. After you’ve cycled around the Brighton sights, why not take a bird’s eye view of this seaside hideaway? The Brighton Wheel (much like the London one, only smaller) is fully wheelchair accessible and a great way to see the town from way up high. Tickets for disabled adults are £6.50 and disabled children’s tickets are £5. Carer tickets are £4. Get inspired for your Brighton break at www. visitbrighton.com.
OH I DO LIKE TO BE BESIDE THE SEASIDE There’s nothing worse than turning up at the beach, ready for a day of salty sea air and ice cream to find that you can’t get access to the sand. Thankfully, there are plenty of beautiful blue flag beaches on the UK coastline that are easily accessible for wheelchairs. Benllech beach on the east coast of Anglesey is rated highly for a great family day out. Clear, safe waters and wide sandy areas make this a wonderful beach to enjoy and there are cafes and shops nearby if you want to stop in for those all-important ice creams. One thing to look out for in high season is the tourist traffic at popular beaches. If you’re not someone that deals well with crowds, best avoid busier beaches in June, July and August. Check out access at coastlines near you at www.thebeachguide.co.uk.
i Visit England www.visitengland.com/ plan-your-visit/access-all
Visit Scotland www.visitscotland.com/ holidays-breaks/accessible
Visit Wales www.visitwales.com/ explore/accessible-wales
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Holiday Cottage with Access for All
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Voices
STRUGGLE Yet, until now, I’ve struggled to dispose completely of a nugget of needing to normalise. Not so much in how I want to perceive Isaac, but in how I may view myself as a parent. Those early years in particular – if I’d been a more suitable, adaptable, confident parent, could I have dealt with Isaac’s trouble better? Not the pure autistic traits like routine, sensory torment, social dysfunction and difficult learning – more the upset, inflexibility, food phobias. If I’d been a more ‘normal’ parent, would things have been easier? Fortunately, with my forceful, independent, intense, adorable and not (in the slightest) un-challengeable, nearing-three-year-old daughter, any nagging sense that I needed to normalise my parenting role has evaporated once and for all. ‘Normal’, I now know once and for all, is nonsensical.
THE NEW NORMAL matt davis When your child has a disability of any kind, it’s a very loaded word – ‘normal’. att avis re e ts on his rge to nor alise son saa s a tis and hat he s learned as a parent THE YEARNING FOR normalisation is a place many parents find themselves at some point in the alternative reality journey that is autism. Whether from within when as a new, or as yet unaware, parent, the atypical, often-antisocial behaviours of your child baffle too much. Or, perhaps more commonly, coming from others. Without wishing to, their normalising – “our child does that”, “we struggle to discipline”, “tantrums – tell me about it!” – feels like a judgement on your
parenting skills and a dismissal of any distress your child has. My need to normalise has diminished year on year. Comprehension of the condition is one reason, of course. Having my wife doing wonders for awareness has helped hugely too, educating the world, pushing Isaac where possible. As has attendance at a school with a focus on life skills, relevant passions, a proper education and so much more. Why normalise?
COMPARISON Comparing Isaac and Tabitha is futile and achieves precisely nothing positive. Her typical development from social imagination to creative play to language acquisition (her words need forming, but appropriate use and understanding compounds by the day) is, I have to admit, a real relief. And it’s also reassuring. Something she doesn’t want to do? A place she doesn’t want to go? She will scream and shout and be belligerent. But coaxing, time and, bit by bit, logic will settle her, make her smile, change her mind. All those toddler-y behaviours exhaust parents but, crucially, are surmountable. How she’ll draw and play and respond as we want – give or take defiance and annoyance. I now fully understand the desire of fellow parents, back when we couldn’t communicate with Isaac, to try and empathise with us. And, oddly, that simply affirms our parenting with Isaac didn’t – and doesn’t – fall short in any way. Because the long game is so different.
i Matt Davis is a parent patron for Ambitious about Autism, www.ambitiousaboutautism.org.uk, the national charity for children and young people with autism. He blogs about his family’s life at mysonisaac.blogspot.co.uk. Follow Matt on Twitter at @copyiswritten.
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Life
WIN A KINDLE
Bookworms, we’ve got just the thing for you with this issue’s competition… This issue, we’ve got one classic six-inch Amazon Kindle to give away. This dinky eReader comes with lots of great features, including: • A six-inch touchscreen display that reads like paper – no glare, even in bright sunlight. • The ability to hold literally thousands of books. • A 1GHz processor that enables you to turn pages quickly for an uninterrupted reading experience. • A battery that lasts for weeks rather than hours. • Eight different text sizes to choose from. • The ability to share your books with your family through Family Library, which links your Amazon account with that of your spouse or partner.
i Check out the full Kindle range at www.amazon.co.uk TERMS AND CONDITIONS: All entries must be received by 30 June 2016. Entries accepted from the UK only. One entry per household. Prize is one Amazon Kindle six-inch eReader only. The prize is not transferable to another individual, no cash or other alternatives will be offered and will be delivered to the address provided by the winner. Prize winner will need access to a computer with a USB port and wireless internet in order to use the prize. The winner will be drawn at random. The publisher’s decision is final.
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PICS: © AMAZON
competition
THERE’S NO GREATER magic than getting lost in the pages of a good book. You can be transported to foreign lands, encounter mythical creatures and make friends for life without even leaving your front room – there’s nothing in the world quite like it! In recent years, the literary world has become even more accessible thanks to the invention of the eReader. Nowadays, you can fit a small library’s worth of titles into one simple, slimline device – freeing up your handbag or hand luggage when you’re on the go! It’s Amazon’s Kindle that’s been the runaway success, with millions selling worldwide. Nowadays, there’s a variety of different models available to suit your needs, whether you need a straightforward reader or a swankier gadget that’ll double up as a tablet. The best thing about eReaders like the Kindle is that it comes with lots of nifty features that’ll let you adjust brightness, contrast, font size and more – and it’s all standard in the device, costing no extra, making it a great purchase for people with a variety of disabilities.
• HOW TO ENTER To be in with a chance of winning, just answer this question:
HOW MANY DIFFERENT TEXT SIZES ARE THERE TO CHOOSE FROM ON THE SIX-INCH KINDLE FROM AMAZON? A. TWO B. SIX C. EIGHT Send your answer, along with your name, address, daytime telephone number and where you picked up your copy of Enable to Kindle Competition, Enable Magazine, DC Publishing Ltd, 200 Bath Street, Glasgow, G2 4HG, or email your details to competitions@dcpublishing.co.uk, with Kindle Competition in the subject. All entries must be received by 30 June. Good luck!
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Interview
Teddy the wonderdog Dogs are man’s best friend, but few pooches take their friendship beyond walkies and playing fetch. Then there’s dogs like Teddy, whose role as companion stretches beyond the usual doggy duties to regularly save his owner Wendy’s life
WHEN WENDY HILLING, 66, stops breathing in the middle of the night, Teddy the golden retriever is the first to notice and raise the alarm. At all times of day and night, Teddy is on call to ensure Wendy’s safety and assist her in day-today tasks, from using the cash machine to putting on her slippers. When Teddy bounded into his new home in 2007, the trained assistance dog transformed life in the Hilling household. Wendy has epidermolysis bullosa (EB) recessive dystrophica, a condition that causes her skin to tear or blister if knocked. The blistering is also present internally, causing problems within her mouth and throat.
INDEPENDENCE This rare and debilitating condition leaves Wendy unable to complete simple everyday tasks, such as opening and closing doors, and also affects her breathing during the night. When Teddy arrived, Wendy regained some of her much-missed independence, and she gained not only a companion but a reliable canine carer. Wendy was so inspired by her fourlegged friend that she put pen to paper
and wrote a book about him: My Life In His Paws. “He’s such a bouncy dog, I still refer to him as a puppy but he’s nine years old now,” says Wendy. “Life is so much easier with him; he’s always one step ahead of me. When I go out with Teddy next to me, I don’t feel disabled – I see the world through an able person’s eyes.”
HEROIC Teddy not only assists Wendy, he also provides much-needed respite for her husband Peter. With Teddy acting as devoted canine carer, Peter is allowed more time to himself. In times of crisis, the pair act as a heroic duo to help Wendy back to health. “When he hears me struggling to breathe, he wakes Peter to raise the
“When I go out with Teddy next to me, I don’t feel disabled – I see the world through an able person’s eyes”
alarm – I must make a noise just before I stop breathing,” said Wendy. “Teddy’s so aware of what’s going on. We were in a shop today and I gave a big sigh and he started barking – I had to reassure him everything was OK.” Although Wendy and Peter have had six golden retrievers in total, both believe Teddy is special. The loveable pup was provided to Wendy through Canine Partners, after passing his puppy suitability exam with full marks at six weeks old.
AWARENESS My Life In His Paws is part tribute to Wendy’s best friend and wonderdog, part awareness-raising venture to educate people on her condition. “So few people know about EB,” says Wendy. “I think the book will help the world see what life is like living with the condition. I want to help the world understand EB. “Teddy is so remarkable; his story has to be told. There will never be another Teddy. We have a special bond, it’s not dog and owner – we are as one. You can’t even see the seams. We are a team.”
i My Life in His Paws by Wendy Hilling, published by Coronet, is available now.
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E V I T VA
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www
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