enable Forget canâ€™t - think can!
July / August 2018
THE BIG ASSISTED
DYING DEBATE Should terminally ill people have the right to die with dignity?
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enable Forget can’t - think can!
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EDITOR Laura Hamilton firstname.lastname@example.org
Welcome to the summer edition of Enable!
FEATURES WRITER Lorne Gillies email@example.com EDITORIAL CONTRIBUTORS Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie firstname.lastname@example.org PRODUCTION ASSISTANT Lisa McCabe email@example.com SALES Marian Mathieson firstname.lastname@example.org Carl Farnworth email@example.com,uk ENABLE MAGAZINE www.enablemagazine.co.uk
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This issue we cover the controversial and emotive topic of assisted dying (which is not to be confused with assisted suicide). With Noel Conway’s case in the Court of Appeal at the time of print, we wait on tenterhooks as they come to a decision. With reasonable arguments on both sides of the debate, it’s a topic that’s sure to get you thinking: should terminally ill people have the right to die with dignity? We weigh in on p40. Join in the discussion by tweeting us @EnableMagazine. Our big interview is with much beloved media personality Gail Porter, who shot to fame in the 90s presenting all our favourite TV programmes. Twenty years in the limelight has seen her go from highs to lows: being diagnosed with bipolar disorder and briefly being sectioned. Read all about Gail’s second coming on p11. We take a look at motor neurone disease on p34, and the issues facing people who are diagnosed with MND and their families, as well as exploring how the loneliness epidemic has affected disabled people. There have been some big political announcements recently, including the revelation that its investing £20 million to tackle loneliness in the UK, so there’s no better time to look at the epidemic of isolation and how it’s affecting the disabled community on p31. We also look at how the new funding going into the NHS may bring about free personal care at the point of need on p14. And we hope you’ve been following the news about medicinal cannabis oil as closely as we have – we examine the debate on p23. Hope you enjoy!
EDITOR’S PICKS... 44 ACCESSIBLE DAYS OUT We look at where to go in the UK and what to do. 64 THE SECRETS OF NUTRITION Being healthy doesn’t have to be a chore. Follow these easy tips to eat a balanced diet. 72 FACE IT One campaigner is taking on hate crimes against people with disfigurements.
SAY HELLO We love hearing from readers so reach out on Twitter @enablemagazine
Laura Hamilton, Editor
SUBSCRIBE TO ENABLE You can get every issue of Enable delivered direct to your door, for £25 for two years or £15 for one. Head to www.enablemagazine.co.uk/subscribe, or call us in the office on 0844 249 9007. Enable Magazine
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interviews INSIDE THE MIND OF GAIL PORTER We chat to the TV presenter about the issues she’s passionate about and the importance of support.
MODEL AMBITION Jack Eyers is the first disabled person to win Mr England. We catch up with him about his Para athlete journey.
life NO PLACE LIKE HOME From adjustments to grants, we take a look at making your house a home. ACCESSIBLE DAYS OUT As the summer is finally here, we find out where to spend an accessible day out around the UK. THE POWER OF CONFIDENCE Body confidence is important and transformative. We explore how to get in a positive mindset.
care HAPPY 70TH BIRTHDAY NHS As the NHS hits the big 70 this year, we look at Lord Darzi’s report that recommends free personal social care at the point of need. RETURN TO THE ASSISTED DYING DEBATE It’s an emotive subject. It’s been a year since Noel Conway took his case to court, so we revisit the discussion about assisted dying and await the verdict.
support FUNDRAISING FOR MOTOR NEURONE DISEASE We take a look at the dehabilitating disease and the affect it has on people.
health THE SECRETS OF NUTRITION Having a healthy diet is much easier than you think.
voices PAY IT FORWARD Our columnist, Tim, talks about the importance of support from your peers.
PICS: © KEN MCKAY/ITV/REX/SHUTTERSTOCK; DAVE JONES PHOTOGRAPHY; STEVE ULLATHORNE; ANTHONY ROBLING
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spotlight BABY BUMP Pregnancy can be a bumpy ride. We talk to two mothers about their very different experiences. MEDICINAL CANNABIS HOLDS THE POWER Medicinal cannabis and CBD oil are hot topics at the moment. We look at the debate so far.
ON THE CALL SHEET We chat to the co-founders of film 104, the pioneers of disability cinema, about what to go see at the movies.
THE LONELINESS EPIDEMIC In an increasingly isolated world, we look at how loneliness affects the disabled community.
MY GP AND ME People with learning difficulties and autistic patients have reported communication problems at the GP. We explore how doctors are combatting these problems.
DISABILITY ARTS The play’s the thing. Lung Ha Theatre Company and the West Yorkshire Playhouse tell us what they are up to.
THE ADVENTURE IS OUT THERE We chat to Jeremy Wood about how amputation has never held him back and his exciting trip to Australia.
FACE IT Rory McGuire tells us about the campaign to stop hate crime against people who look different.
HAVING A LAUGH WITH LOST VOICE GUY We chat to the Britain’s Got Talent winner.
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motoring SKODA KAROQ Our motoring columnist gives us the lowdown on how accessible the Skoda Karoq is. Turns out, it’s one smooth ride.
sport KEEPING ACTIVE THIS SUMMER From skydiving to gardening, there’s something for everyone to get them out and about and fit and healthy. Let’s get outside and get active!
employment & education PREPARING FOR UNIVERSITY University can be the best time of your life. We look at how to manage your university experience to get the most out of it. REASONABLE ADJUSTMENTS Organisations have a duty to make reasonable adjustments for their disabled employees. We look at what this entails.
LATEST A roundup of the disability news stories making the headlines
Disability hate crime increase in Scotland
IT HAS BEEN REVEALED that disability-related crime has increased by 51% in the last year in Scotland. A report from the Crown Office said there were 284 charges aggravated by disability prejudice in 2017-18. Racially motivated incidents are the most common hate crimes in Scotland, with the majority of racial and religious hate crimes against
NEW APP TO HELP THOSE LIVING WITH NERVE DAMAGE PAIN A NEW APP IS BEING developed to help people who suffer with pain as a result of damage to their nervous system. Over four million adults in the UK are living with nerve pain. A patient undergoes an operation to insert a wire and battery alongside the spine that generates remotely controlled electrical pulses to aid pain. The mobile app will work as a remote control to make the technology easier to use. The technology has already been used successfully at the John Radcliffe Hospital in Oxford where one user walked unassisted for the first time in four years after the operation. 6
Catholicism. Overall, there were over 3,248 charges filed, but the rate fell by 4% compared to 2016-2017. It’s the lowest it has been in 15 years. Across the UK, disability hate crime has increased. In England and Wales, last year 5,558 hate crimes were disability motivated, totalling 7% of hate crimes overall. It’s a 53% increase on last year.
DAVID TENNANT SHOW TO SHINE LIGHT ON LEARNING DISABILITIES FORMER DOCTOR WHO STAR David Tennant is set to play the father of a child with an undiagnosed learning disability in new show There She Goes. The five-part comedy series will be broadcast on BBC Four. The show will follow parents Simon, played by Tennant, and Emily, played by Jessica Hynes, and their 9-year-old daughter Rosie, played by Miley Locke, as they navigate their way through different situations including simply going to the park to explaining that every day isn’t her birthday. The show will aim to shine a light on the day-to-day challenges of having a child with a learning disability in a light-hearted, comedic manner. It will be based on the experiences of writer Shaun Pye, whose daughter was born in 2006 with a rare and undiagnosed chromosomal disorder.
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TransPennine Express drops inaccessible trains in north east
MENNA FITZPATRICK, BRITAIN’S MOST successful Winter Paralympian has been recognised in the Queen’s Birthday Honours. The visually impaired skier won one gold, two silvers and a bronze medal in the 2018 Winter Olympics with her skiing partner Jennifer Kehoe. When her father read the congratulatory letter from the Palace out to her, Fitzpatrick didn’t believe that she had been recognised by the Queen. “2018 has been non-stop with exciting things,” she says. “This is one of the top things that’s happened to me.” The twenty-year-old alpine skier is the youngest person on the Queen’s Honour list this year.
LOST VOICE GUY GETS SECOND SERIES ON RADIO 4 BRITAIN’S GOT TALENT WINNER, Lost Voice Guy, has had his Radio 4 series Ability recommissioned for a second series. The semi-autobiographical comedy focuses around 25-year-old Matt, played by Lost Voice Guy, who has cerebral palsy, and is co-written by comedian Katherine Jakeways. The second series will feature BAFTA-winner Allan Mustafa as Matt’s new carer. The first series was broadcast ahead of Lost Voice Guy’s appearance on ITV’s talent show. Lost Voice Guy went onto the programme with the goal of selling out a gig in his hometown of Newcastle. The 37-year-old managed to sell out The Stand, a theatre with the capacity of 300, in a matter of hours after winning Britain’s Got Talent. He is also performing at Edinburgh Fringe Festival in August. The comedian, whose real name is Lee Ridley, is the first disabled person to win ITV’s talent show. Ridley won the BBC New Comedy prize in 2014 and is thought to be the first comedian to use a voice aid in his act.
THE UK’S MOST SUCCESSFUL WINTER PARALYMPIAN GIVEN MBE
AFTER COMING UNDER CRITICISM for the decision to reintroduce Mark III trains on the Liverpool to Scarborough line, the TransPennine Express (TPE) has abandoned the plan. The trains, which are 45-years-old, were not wheelchair accessible and did not conform to current access standards. The operator was encouraging wheelchair users to book accessible trains, or pay for a taxi to complete their journey. Some of the train doors had to be manually opened and had no cycle provisions either. The plans came under fire as they contravened antidiscrimination laws and have now been scrapped. The trains will now be used in training exercises instead in the leadup to the new NOVA trains being installed in autumn 2020. The UK government has promised that all trains will be wheelchair accessible by 2020.
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Inside the mind of
Gail Porter As a 1990’s pin up star flourishing in her TV career, everything was looking rosy for Gail Porter. However, sometimes life doesn’t go quite as planned. Diagnosed with bipolar disorder in 2005 and developing alopecia totalis, Gail didn’t let the lows hold her down, or define her
PIC: ©KEN MCKAY/ITV/REX/SHUTTERSTOCK
fter studying film and photography, Edinburgh-born Gail Porter envisioned a life behind the scenes in the crazy world of TV. Instead, it was a career in front of the camera that made her a household name. Working her way through children’s shows, chasing ghosts in America and the famous projection of her nude image on the Houses of Parliament, Gail was well known and well loved. However, inside Gail was battling personal demons. DIAGNOSIS Mental health conditions can be physically and emotionally debilitating. They’re also invisible, which means the impact of mental health has taken – and is still taking – a long time to fully comprehend. In 2018, the conversation about mental health is buzzing, but there is still a taboo around it; just imagine what the attitude towards mental health conditions such as bipolar disorder were in 2005. It was the year that the bubbly, enthusiastic, and stunning blonde TV presenter was diagnosed with bipolar disorder. People living with bipolar often experience manic episodes or depressive episodes – literally feeling high or low. In extreme cases, people with the condition can experience psychotic
symptoms during either high or low periods. Unfortunately, in April 2011 Gail was sectioned under the Mental Health Act after fears for her safety. It was a traumatic experience. Gail even admits it took her several years before being able to walk past the London based Royal Free Hospital, which has since shut down. SILVER LINING Despite Gail’s well documented negative experiences, including anorexia and alopecia totalis, the charismatic and bubbly side of Gail still holds strong – seeing the positives in all situations. Now she is channelling her experiences into supporting others. “I’ve just finished another book. I’ve written it all myself, but the publisher is not that happy because half of it is handwritten,” laughs Gail. “They were like ‘who hand writes in 2018?’” Gail is just as witty as she is There is help no punchy and empathetic. matter what you After the release of her need, it just takes 2007 autiobiography, Laid Bare, Gail is a while to find it documenting her life ask. And don’t be again in an as of yet ashamed untitled memoir. “It tackles everything from when I got sectioned. It crosses all those things that were quite tricky to deal with at the time. I thought most people have been through it, I may as well talk about it. It’s kinda happy and kinda sad all at the same time. I had two guys who thought they were Jesus in my ward, as much as I was really sad for them, it kept me amused for a bit because they were fighting over who was the best,” remembers Gail with a chuckle. “I never thought I would see myself in that position at my age. The book
INTERVIEW also covers care, medication and doctors. I only saw a doctor once in 20 days. There was a security guard on the ward to make sure there were no fights, and that was it… It felt like nobody knew what to do with you and you were a burden.” Even though mental health support is improving, there is still a long way to go as Gail experienced. Gail has been on a rollercoaster ride throughout her life, but she is headstrong and determined to support others in similar situations.
PICS: © CHANNEL 5; INSTAGRAM.COM/IAMGAILPORTER
CHAMPION Gail explains: “I think so many people keep things quiet. When my hair fell out, or when I was told I was bipolar, I thought that there’s so many people that are probably going through the same thing and keeping it to themselves. I’m not ashamed. Whatever happens to me happens for a reason and I would rather
share it and know if I could possibly make somebody else feel better then I’ll feel better for that.” From waking up to find all her hair had fallen out overnight, being diagnosed with alopecia totalis and bipolar disorder, having experienced anorexia and post-natal depression, to surviving bankruptcy and sleeping on a park bench: it can seem like all too much for one person to handle. Gail is not like most people. Despite the hardships she maintains her charm and positivity. Gail Porter admits she’s no expert, but others may find solace in her experiences. What’s her advice for people experiencing mental health problems? “I would say try and talk to someone, even if it’s your friend. I’ve phoned the Samaritans at times: I found them really helpful. Just don’t hold it in, try and get some fresh air,” advises Gail. “There is
help no matter what you need, it just takes a while to find it – ask. And don’t be ashamed. Don’t ever be ashamed.” These days Gail is busy and in high demand. She’s supporting others living with bipolar and experiencing debt – unfortunately a regular occurrence for those living with a mental health condition – by working with Glasgowbased company Creditfix. Gail’s also back on TV, appearing on The Wright Stuff as a regular panellist and even preparing to be the voice of an animated mouse in an upcoming children’s show – she’s riding a wave of positivity. As for the book, there’s no concrete release date or title. “I don’t know yet. They’re going to have to get someone in to type it up for me first,” Gail adds with an almighty giggle. No matter what life throws your way there is a silver lining on the horizon, all you need is to get help along the way.
FOR MORE INFORMATION
Samaritans www.samaritans.org 116 123 Creditfix www.creditfix.co.uk 0808 208 5198
HAPPY 70 BIRTHDAY NHS th
Our National Health Service celebrates its 70th anniversary this year. We look at how far it has come and what’s next as Theresa May has announced an extra £20 billion in funding
he NHS is one of the key institutions of post-war life in Britain. Introduced by Health Minister Nye Bevan under the supervision of Prime Minister Clement Atlee in 1948, the NHS is the world’s first ever free health service and despite our own individual frustrations about not being able to get an appointment at the GP for three weeks, it’s the envy of much of the world. It has changed the make-up of British life – previously hospitals had been run by charities or local councils and people fell into debt paying for doctors and care. Britons over 70 were born in nursing homes – which seems unthinkable in a country where the NHS is there to take you through every major health milestone. It’s the NHS’ tireless staff, from the nurses, doctors and surgeons down to the administrative teams, who make the NHS what it is. It’s literally a life-saver – but that doesn’t mean improvements can’t be made. THE LORD DARZI REVIEW Former Health Secretary Lord Darzi has revealed his review which examines the quality of health and care in the NHS’ 70th year, as well as recommending the direction and reforms it should take in the future. In his comprehensive report, there were many things to celebrate, including a focus on mental health which has led
to a decrease in the number of deaths by suicide. However, there are issues that need to be addressed. When it comes to social care, the quality may have improved, but access to services has dropped. The statistics are shocking. Publicly-funded social care in England has been rationed and fewer people have been able to access the care they need. Instead, people are self-funding care, having informal care or simply going without. Age UK has found that unpaid family care has increased significantly. Currently, it’s believed that there are seven million carers in the UK (that’s one in ten people), including 700,000 young carers – but the number may be much higher than it’s thought as many people are unaware they are doing care work. The BBC has estimated that one in three people will be a carer at some point in their life. Another issue relating to care is that 1.2 million people age 65-plus aren’t receiving social care help, including basic tasks like eating, bathing and dressing – an increase of 50% in the last year. With an increasingly ageing population, this is cause for concern. To combat this problem, Lord Darzi has suggested free personal social care at the point of need. It’s a solution that would cost the tax payer, but improve people’s lives immensely. It’s also a step that organisations would
welcome. Caroline Abrahams, charity director at Age UK says: “Older people tell us they want good quality care if their needs require it, without a constant battle to get or keep it. Personal care, free at the point of need would be a big improvement on the situation we have today. Yes, we would all have to contribute towards funding it, but it may just be the kind of bold offer that many older people would consider worthwhile. It’s certainly worth seriously exploring.” With an extra £20 billion in the NHS pot, could free personal social care at the point of need be next on the agenda? THE NEXT 70 YEARS While the NHS is a much beloved institution, it isn’t without its critics. Long waiting times, delays, miscommunications and mistakes – free health care isn’t a walk in the
park. The NHS has gone through various evolutions, thousands of reports have been commissioned, training and workshops have been completed to improve healthcare. After years of austerity, there is concern about funding the NHS – even with the birthday present from the government. There’s also cause for concern that the NHS will be taken over by private companies and that healthcare will be privatised, returning the UK to a time where we had to pay through the nose for healthcare. It would mean that many people couldn’t afford basic treatments. While the Prime Minister has committed a much needed £20 billion to the NHS in honour of its 70th anniversary, there are questions about where the government will get the extra money. Higher taxation has been cited as the most probable
source of funding – unwelcome news in some quarters, but necessary to pay for our most vital resource. The extra money could sort out problems highlighed in Lord Darzi’s report. Who knows what the future holds for the NHS. A cash injection may relieve some of the pressure, but there are many cracks in the system. Burnout from overworked doctors, nurses leaving in droves and that’s before we even find out what the repercussions of Brexit are on the UK’s healthcare. However, as the NHS has come so far and with its passionate medical teams and support staff in the last 70 years, let’s hope it breaks through new boundaries in the next 70 years.
Follow the NHS’ celebrations on Twitter @NHSat70
With an extra £20 billion in the NHS pot, could free personal social care at the point of need be next on the agenda?
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NO PLACE LIKE HOME
Independent living might sound like a dream, but finding housing that suits your individual needs can be a challenge. It can seem like an endless hunt for the right home, but the path to living independently might not be as winding as you think
aking the decision to live independently is a huge achievement, but with so much to consider on top of finding a place you actually want to live in, it can be a confusing and stressful time. You might not know where to start, where to look or what help and assistance is available for you.
Adapting a property to suit your requirements is an important aspect of
independent living. Whether your needs have changed, or your property is no longer accessible, the first step towards finding your new pad is knowing where to look for support. There are organisations set up that help you search for accessible housing in your area or provide purpose built properties. If you want to move, Link Housing (www.linkhousing.org.uk) allows you to search through shared, rented, private and brand new accessible housing in your area.
You can register with your local authority to be placed in accessible housing, though this can mean a long wait to move out. To apply go to your local authorityâ€™s website or call your local housing association, you can find these on the government website using your postcode. You will be added to the Accessible Housing Register which matches you to a suitable property and landlord. You can register with more than one authority at once and donâ€™t have to be currently living in the area.
LIFE ADAPTING A HOME
If you’ve fallen in love with a property, but it doesn’t meet your requirements, it might be possible to make adaptations. This can take the pressure off the process of finding a suitable accessible property or might not require you to move at all. If you decide to take this route, it’s important to factor the costs of adaptations into your initial budget. Depending on what you’re changing, this can range from a few hundred to thousands of pounds. Shop around and research exactly what you need before committing to a project. If you rent from the council, it's obliged to make any adaptations free of charge, but if you rent privately or own your home, grants are sometimes funded by your local council through application. If you’re renting privately and the landlord won’t let you permanently change a property, you can carry out temporary adaptations to your home. This might include adding bars and handles to the side of the bath, putting longer chords on light switches or putting a free-standing bath seat into your walk-in shower.
When searching for accessible housing, make sure you take into account all of
the features you require. Even the smallest things matter and you shouldn’t settle for less than everything you need. Making a list of what you require in a property can make your search easier and can help when speaking to your local authority or estate agent. A good way to think about what you require is to go around your current home and mark down what you already use alongside what you don’t have, but need. It's important to like the property, too. Having special requirements shouldn’t mean you settle for a house you don’t like, even if it does meet them all. Make a list of general features you want in a house from the kitchen, patio, or tall windows you've daydreaming about, and not just what you require.
Adaptations can all add up and put pressure on your finances, but you could be entitled to help with taxes and benefits that will take some of the pressure off the costs of your own home. It’s possible to get a discount on your council tax, or an exemption if you have a disability. You may also be eligible for housing benefits to help with rent costs. Funding is also available to help cover
the cost of adaptations. If you live in England, Wales or Northern Ireland, you could be eligible for a Disabled Facilities Grant (DFG) available through your local council. The DFG is provided by the government and can help with adaptations to your home whether it's privately owned or rented. Widening doors, installing ramps and adding stairlifts are just a few things that the grant helps cover. Direct payments are available if you wish to source your own care instead of having it provided by your local authority, but they can also be used for other aspects of advancing your care such as features in your home. If you want to receive direct payments you can work with your local authority to set up a direct payment agreement detailing what the money will be used for. To find out more about DFG or direct payments talk to your social worker or the local authority. There is another option available to you: you can also apply to borrow equipment from the NHS or your local authority to allow you to live independently. The process begins with an assessment to establish your needs, which will take into account your current living situation, your disability and what facilities or care you already have.
WHO TO CONTACT For information on what funding is right for you and help with direct payment plans, speak to the Money Advice Service on 0800 138 7777 or visit www.moneyadviceservice.org.uk
For advice on products and services visit Living Made Easy at www.livingmade easy.org.uk Find out what equipment and help is available from your local
authority, and how to apply for funding at www.gov.uk For advice and support talk to the Disability Living Foundation on 0300 999 0004 or visit www.dlf.org.uk
Baby bump Finding out that you’re pregnant can feel amazing, but pregnancy can be a bumpy ride. No two women have the same experience of carrying a child: we speak to women about their experience of being pregnant and disabled
f you want to start a family and have a disability, you may be concerned about how it may affect your pregnancy – if at all. If you’re taking medication, it may have to be changed before you can become pregnant. The best course of action is to talk to your GP and all your health providers so they can assess the situation. “It was tough going and I knew from the start it would be hard work. I was told as a child that due to my disability I couldn’t have kids, so falling pregnant felt like a miracle,” says Olivia Djouadi, who had previously discussed adoption with her husband. “When a baby arrived it was magic for us both,” she says. However, despite the support she got from her husband, it wasn’t all smooth sailing. Olivia, who has type 1 diabetes and an autoimmune disorder, needs six injections and blood tests every day for life. “My disability immediately affected my pregnancy,” says Olivia. “I had to keep my blood sugars in a very narrow range – what would be normal for a non-diabetic person: this was necessary for a growing baby so it could survive. I was on six insulin injections a day and blood testing 12 times a day, measuring food amounts, light exercise and having to visit the hospital every week. I took additional medication and ended up for months in hospital for round the clock care when both my kids were born.” But not everyone who is disabled needs additional support. “People are always surprised when they find out I don’t take any medication at all,” says Kelly PerksBevington, who has spinal muscular atrophy
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type 3 and is a wheelchair user. Pregnancy was a very positive experience for her. It had an unexpected benefit: it straightened out her spine – her spine is curved 290 degrees and her rib and hip usually touch causing pain, but while she was pregnant, she didn’t have that problem. HARD WORK Creating a baby is never easy, and it can take a toll on your body. “Working was out of the question,” says Olivia, who volunteered throughout part of her pregnancy. However, Kelly, who is a business owner, worked until two weeks before her son was born, and spent the last day at her work running a beer festival. “I didn’t expect to do Kelly that!” she says. “I was in bed at 9pm every night exhausted though.” Kelly had support from her husband and family, but her labour was intense. “I was keen for a normal labour, but pregnant. I was tired and had I didn’t know what I was going morning sickness, which can to do until the last minute. also be serious as a type I had booked a c-section, Pregnancy is an 1 diabetic, but I looked but my water broke before emotional experience, fine.” it and I went into labour. Kelly explains that and it’s important to Then I had to have an everyone with spinal know that everyone emergency c-section, but muscular atrophy type I couldn’t have an epidural experiences it 3 is different and it was because of my spine so difficult for doctors to differently I had to have a general know what to expect. anaesthetic.” “We went into it without a Kelly hadn’t wanted a general guide,” she said. “There are lots anaesthetic as they make you drowsy of horror stories on the internet, and cried when she was told she had to but I did find a support group on Facebook have one. “When I woke up it was so surreal. that was helpful. Some people have died My husband was holding our son and it after being pregnant with spinal muscular was an amazing experience to see them atrophy type 3, but I’m strong and I know together,” she said. what my body is capable of.” Pregnancy is an emotional experience, Olivia’s advice to expectant mothers and it’s important to know that everyone is to make contact with mums who have experiences it differently. “As a disabled a similar disability to see how they are person, sometimes you feel like you have to coping or did cope. “I wish there had prove something,” says Kelly, who is often been a support group for mums with asked if she is the mother of her child when disabilities,” says Olivia. “I did feel isolated she is out with other people. and even though other mums shared their Olivia had never expected to become experiences, it wasn’t my experience.” pregnant in the first place. “As I was told I Kelly suggests learning from her couldn’t have kids it felt like I was busting experience and doing your research. “I went through another barrier,” she says. into it blind, and didn’t have a specialist consultant. Find one that you’re happy SUPPORT with, but you know your own body best.” Not all disabilities are visible, and while Olivia looked glowingly healthy, it wasn’t i FIND OUT MORE the case. “People assumed my pregnancy was easy as I looked healthy, they never www.family-action.org.uk realized the local ambulance service were www.scope.org.uk at our home a lot,” said Olivia. “Even with 0808 800 3333 all the health issues, I was glowing as I was
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ON YOUR MIND THE WAR ON DRUGS:
MEDICINAL CANNABIS HOLDS THE POWER AS THIS IS AN ONGOING DEBATE, EVERYTHING IS ACCURATE AT TIME OF PRINTING
Billy Caldwell, Alfie Dingley, Murray Gray: three young boys living with severe epilepsy. Their stories have been broadcast far and wide which has led to the government reviewing its stance on medicinal cannabis
ver the weekend, I issued an emergency licence to allow Billy Caldwell’s medical team to access cannabis-based medicine to treat lifethreatening seizures caused by a severe form of epilepsy,” announced Home Secretary Sajid Javid in the Houses of Parliament on Monday 19 June. Like many families across the UK caring for children with severe epilepsy, sometimes approved medication doesn’t work. Although not pharmaceutically proven, cannabis for medicinal purposes has had some success in stopping seizures.
The debate on medicinal cannabis started in earnest at the start of June – after months of simmering under the surface.
It began with one young boy and his mother’s determination to help him get better. In a small town in Northern Ireland, Charlotte Caldwell campaigned to get CBD oil prescribed on the NHS for her son Billy. CBD oil is a by-product of cannabis, which comes from the marijuana plant. In the UK, cannabis is a class B drug, which means it’s illegal to possess and carries a 14-year jail sentence and an unlimited fine. The part of the plant that is illegal within the UK is not in fact CBD (or cannabidiol), it’s tetrahydrocannabinol (THC), which causes the symptoms that are associated with smoking or ingesting cannabis. “Cannabidiol/cannabis has long been thought to have therapeutic properties. In the UK there is a legal issue, regarding the amount of THC in the product – the
component that causes the medical high. Cannabidiol products are legal if they contain less than 0.3% THC,” explains Professor Hannah Cross, The Prince of Wales’s Chair of Childhood Epilepsy and spokesperson for charity, Young Epilepsy. Earlier in the year, Billy became the first person to receive a prescription for CBD oil from the NHS before the Home Office intervened, forcing his mother, Charlotte, to travel to Canada to obtain medication for her son. Whilst using CBD oil, Billy went from having 100 seizures per day to being seizure-free for nearly 300 days. On her return from Canada, Charlotte was stopped at Heathrow Airport and had the cannabis oil procured for Billy confiscated – Billy was admitted to hospital days later.
SPOTLIGHT THE DEBATE
“There are many ‘hemp oils’ on the market – these legally stand as they allegedly contain less than 0.3% THC, but they are not produced to a pharmaceutical standard,” adds Professor Cross. “It has been demonstrated that even different batches of the same product have variable content. Doctors cannot, within their code of practice, prescribe such products.” It’s for this reason the demand for regulated medicinal cannabis is so important. In Edinburgh, a similar tale is unfolding. Karen Gray has been tirelessly campaigning to get CBD oil on NHS Scotland for her five-year-old son, Murray, who has Myoclonic Astatic Epilepsy (MAE), which results in multiple, life threatening seizures every day. Living with debilitating tonic clonic seizures (where the body convulses) has affected Murray’s education and childhood. Liberal Democrat MP for Edinburgh West, Christine Jardine, has been working closely with the family and encouraging progress to evaluate the benefits of medicinal cannabis. “I’m hugely relieved for Murray, and for all the other children, that [the government has] come to this decision. It’s a pity that it’s taken so long, but they have come to it now and I welcome it,” says Christine. “Specialists in the hospital, who know how to use CBD oil and the dosage, need to be the ones to make the decision on whether or not a child gets the
treatment – not politicians.”
“I don’t think you can overestimate how painful and difficult it can be for your child to have a condition, which you know could be life threatening, and there is something that can relieve that, but you’re not able to get it,” adds Christine on the situation Charlotte Caldwell found herself in when Billy’s CBD oil was confiscated at Heathrow Airport. Christine has experienced epilepsy firsthand as she herself lives with the condition. Although Christine’s epilepsy is not as severe as Billy, Alfie or Murray’s conditions, she can appreciate and empathise with the struggles of watching young children deteriorate due to lack of medication – currently, the government holds the power over physicians. It’s time for Britain to revaluate their policy on medicinal cannabis to prevent families or individuals going down unregulated routes to get medication.
When it comes to cannabis use globally, the UK appears to be behind the times. In 14 European countries, cannabis is legal for medicinal purposes and in Argentina, Puerto Rico, Israel, Mexico, Turkey and Zambia and Zimbabwe as well. Similarly, in the US medicinal cannabis is legal in 29 states and nine states in the
District of Columbia, which have legalised cannabis for medical and recreational use. No matter your standpoint on cannabis, the necessity to study the medicinal properties of the plant are paramount. As recently as 20 June 2018, just days after Billy was released from hospital when he received CBD oil to regulate his seizures, Canada became yet another country to legalise cannabis for medicinal and recreational use. Christine believes the UK now has an opportunity to see what happens worldwide and how it could benefit at home. “Epilepsy, MS, all sorts of chronic pain conditions – that has to be the priority. However, we should be watching Canada and see what happens there, because we have to accept that the war against drugs has failed and all we’re doing is pushing people into the backstreets… In terms of medicinal cannabis, we need to ensure we don’t get derailed and help these children as soon as practically possible. We know it’s the right thing for them to have the cannabis oil available,” concludes Christine. i
FIND OUT MORE
Young Epilepsy www.youngepilepsy.org.uk UK Parliament www.parliament.uk
Specialists in the hospital, who know how to use CBD oil and the dosage, need to be the ones to make the decision on whether or not a child gets the treatment – not politicians 24
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ON THE CALL SHEET We talk to leaders in disability cinema, 104 film, about their ethos and what’s in the pipeline
e work around the principle that we’re enabling the disabled voice,” says Alex Usborne, who was recently awarded an MBE for pioneering disability filmmaking. He founded Sheffieldbased production company 104 film with director Justin Edgar in 2004. Together, they produce and direct films with disabled directors and production teams behind the camera as well as in front of it. They don’t just focus on the finished product: 104 film is committed to teaching and enabling prospective filmmakers. “There’s a lot of work to do in terms of training and developing talent,” says Alex. “We do lots of workshops with new and emerging talent. We offer a whole journey, taking people from raw talent into developing short films and feature films.” The amount of disabled talent out there is underused and there’s negligible representation in the media. “Meaningful placements where people shadow all departments, from hair and beauty to cinematography is important,” says Justin, who is hard of hearing. CREATIVITY One of 104 films’ goals is to create an environment in film where disabled people can flourish. On its sets and in production, 104 film does things differently and eschew the one-size-fits all mentality. “We decided to reengineer the creative journey,” says Alex. “We experiment and we’re still learning all the time. We look at how we can create the best environment for everyone.” Flexible schedules and times are a given with 104 film, and the directors lead the process. “It makes for a different kind of storytelling,” says Alex.
One of its most innovative productions is Unrest, a documentary directed by Jen Brea, who has Myalgic Encephalomyelitis (ME). It won an award at Sundance in 2017, as well as seven other awards worldwide. Innovative adjustments were put in place so that Jen could direct around her condition. “She directed the entire production from bed,” explains Alex. The result is a personal and evocative journey about what it means to have ME. As well as numerous BAFTAs in his long film career, Justin also has a film noir streaming on Netflix. “I became interested in disability politics and cinema at college,” he says. “While I believe in the shared experience of going to the cinema, disabled people as an audience find Netflix easier than going to the cinema.” Other films of note include Fun with Caravans, which was the first ever motion picture to feature a disabled actor playing a non-disabled role (instead of the other way around), Notes on Blindness featuring UK national treasure Joanna Lumley, and BAFTAnominated Sex & Drugs & Rock & Roll with the stellar cast of Andy Serkis, Olivia Williams, Toby Jones and Ray Winstone. IN PRODUCTION 104 film is still breaking new ground. Currently, the team is working on Dawn of the Dark Fox, the first ever feature film with an autistic director at the helm – Bristol-based Michael Smith. Part animation, it explores the world of autism. Next year is another first for the film world: Retreat is a film being directed by deaf auteur Ted Evans, featuring an all deaf cast. Popcorn at the ready – we’re all in for a treat.
For more information about 104 film and its training and workshops, visit www.104films.com
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Peer-to-peer support is important when it comes to disability, and sometimes there’s nothing as valuable as connecting with someone who just gets it
y first experiences had a huge impact on me, from the first person in a wheelchair that I spoke to after my spinal cord injury, and when I attended a wheelchair skills programme run by the Back Up Trust (www.backuptrust.org.uk). It led me to become a trainer myself, and even to contribute to the training of other trainers. When I reflect on my time in rehab, I realise that the process began with my fellow patients. There was a shorthand in ‘the nod’ at mealtimes, as if we were saying, “Yep. I get it.” During my stay in hospital I moved up the order, a little further through the process of trying to understand just what I was dealing with (a process that continues even now, 13 years later). I would find myself talking up all the new things I had mastered, but I learned pretty quickly that half-filling someone else’s glass meant emptying my own, and that was emotionally draining. Over time, and through Back Up, I learned to lean as well as lift, and as trainers we supported each other. After a few shaky moments where I relied on too much bravado, I finally got it. Sometimes, I had to shut up and listen. Sometimes, there was nothing to be said. Sometimes, the conversation about the hassles of driving or long-haul flying is actually about beginning the process of rebuilding a vision of the future that isn’t dominated by continence issues or chronic pain. Those of us with disabilities inevitably negotiate the world in a different way, and that can be difficult for others to get their head around, or even intimidating, as people worry about saying or doing ‘the wrong thing’. Sure, we can be on a mission to educate, to demystify disability, to
break down barriers, but that too can be emotionally expensive, and sometimes you just want a day off. Or for the person who asks if you are “OK?” to understand that OK can be complicated. All of which leads me to highly value the contact that comes from someone who can nod and say, “Yep. I get it.” And because that’s an important part of my coping strategy, I make sure to pay it forward. We all should, because there are times when that will be the difference between whether we sink or swim.
There was a shorthand in ‘the nod’ at mealtimes, as if we were saying, “Yep. I get it”
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The government has appointed the world's first Minister for Loneliness, Tracey Crouch, and according to Sense, half the disabled people in the UK are lonely. One in four feel lonely every day
ev Tinsley's hearing problems started three years ago. After a series of tests and misdiagnosis, doctors are still unable to agree on the cause of her deafness, nerve damage and skin disease. The transition from being able to hear to being deaf has been difficult for the 45-yearold. The Deaf Society is teaching her sign language, but she still feels isolated. “It’s so hard communicating with people, I feel that no one has the time to write things down for me, and if I can’t understand what they are saying, they roll their eyes and tell me it doesn’t matter,” she says. “Close friends, people I’ve worked with and socialised with have all disappeared. I make up excuses for them, it’s my fault I don’t make the effort, or they probably can’t bear to see me this way. I’ve come off Facebook and no one has noticed I’m not there anymore. I feel invisible and so alone.”
"The first time I met another autistic woman, I was in my 30s, and it was such a relief" Carly Jones
Bev credits misconceptions and negative attitudes as adding to her feelings of isolation, citing the media as portraying disabled people as benefit scroungers as the main perpetrator. “Just because I’m disabled, it doesn’t mean I haven’t paid taxes or never worked,” she points out. “A lot of people are ignorant and rude. They think we are a strain on the benefits system. Invisible disabilities are more frowned upon, and we are judged unfairly. There are disabled people who have been physically and verbally attacked.” Bev thinks hate crimes against disabled people should be treated the same as religious and racial hate crimes. “No one should think they have the right to be aggressive towards a disabled person, including family,” she says.
The UK government has pledged £20 million to tackle loneliness
Disabled people are drastically underemployed, which has a knock-on effect, leading to financial constraints, low self-esteem and isolation. Carly Jones MBE, an autism advocate, points out that only 16% of autistic people are in full-time employment despite having the skills to join the workforce – although of course, many autistic people cannot work. “I know autistic people with a PhD and many without GCSEs. Often someone who didn't pass general tests excels when committing to their passion,” she says, explaining that school can be hard to navigate for autistic people, socially and academically. Lacking basic grades can exclude people from many lines of study and work. When it comes to work and study, many autistic people excel as they have the ability to focus intensely for long periods of time. However, it can be a double edged sword. “Our interests are often enjoyed alone, and not taken seriously. Autistic people like me can become very focussed on our interests. If you’re not autistic, people say you have an expertise, but if you’re autistic people treat it as a special interest, or worse an obsession,” notes Carly. That in itself can make people feel isolated. Work is also a convenient excuse to get out of social invitations. “There’s a lost generation of undiagnosed autistic people who may be seen as workaholics, who may be incorrectly viewed as anti-social,” she says. “We like to feel useful and needed, and so we put a lot of effort into where we excel.” It’s a retreat from social situations
Keep up to date with Carly on Twitter @CarlyJonesMBE
where they may feel uneasy, but in the long run, leads to increasing isolation.
One coping mechanism that autistic women, and some men often use is ‘camouflaging’ or ‘masking’, in which an autistic person mirrors behaviour in order to fit in. Carly likens masking to a chameleon in the wild, trying to survive. “Masking is exhausting and isolating. You shave off a part of yourself every time and little by little lose sense of your selfesteem,” says Carly. “It’s a lonely place, some people call you fake, which is scary and hurtful. The first time I met another autistic woman I was in my 30s, and it was such a relief. I have marvellous and lovely non-autistic friends, but when I’m with an autistic person I don’t need a translator anymore.” Carly has two autistic daughters, and
believes that autistic children and adults can not only spot one another, but migrate to each other, too. It’s important to have friends who understand what you’re going through, and have peers who can relate to you. More inclusivity is one answer to bringing autistic people who feel isolated into the fold, but Carly also reaches out to neurotypical people. She runs a series of events that brings autistic and non-autistic people together, visiting parliament and holding sessions. Bev has found emotional support and friendship through Scope, finding people in similar situations to talk to. “Some of the community have become close friends,” she says. “I feel I can talk openly to the community, because they know how I feel and what I’m going through.”
While new technology, especially social media, has created a platform for people to connect, there’s still a lot more to be done to eradicate loneliness. “We’ve had awareness, now we need equality, and a lot more safeguarding,” says Carly. “Men who aren’t showing stereotypical autistic traits are getting left behind. They’re vulnerable and isolated. We need autistic people in high office to be out and proud. People need to see autism.” Bev agrees that our society has a long way to go in terms of the way it treats disability: easy steps that will make such a difference. “Society needs to be educated on what it’s like living has a disabled person,” says Bev. “How society treats us and how it affects us. Don’t ignore us and treat us like we’re invisible.”
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Campaign to End Loneliness
MOTOR NEURONE DISEASE Motor neurone disease (MND) is a relatively rare, but rapidly progressing disease that kills a third of people within a year and more than half within two years of diagnosis. We explore how the disease can affect the people it touches
ND still has a lot of unknowns and currently there’s no cure. The disease is believed to be caused by a combination of genetic, environmental and lifestyle factors, although the influence of genetics is prominent in only about 5-10% of people who have an inherited form of MND. FINANCE A diagnosis of MND is life-changing in many ways. Losing the ability to work as the disease progresses and having to adapt or move home to accommodate a wheelchair will have a huge impact on financial planning from pensions to savings. A recent survey by the MND Association found that the cost of living with MND was on average £12,000 a year, and that’s without considering the loss of earnings. As Universal Credit is rolled out to replace six other benefits with a single monthly payment, there are some concerns that the transition will leave behind people with MND due to a lack of understanding about the condition. One issue is that Universal Credit claimants are required to have a workrelated interview with a work coach. “This is completely inappropriate for people who have had to give up their career aspirations due to a progressive, terminal health condition,” says Alex Massey, policy manager at MND Association. There are also financial impacts to the switch to Universal Credit. “Some Universal Credit claimants living with MND may face losses as large as £550 per month under Universal Credit,” says Alex. Martin Burnell lives with MND and was
left frustrated and with a mountain of paperwork applying for Universal Credit. After falling at work, Martin eventually received a diagnosis of MND. He had initially thought mobility issues were due to a motorbike accident in his youth, but then his voice was starting to slur, too. More than 80% of people with MND will experience communication difficulties, and many will lose their voice completely. The 59-year-old former health and social care professional says: “I have come to terms with having MND and not being able to do a job I loved, but no one should have to go through what I did.” His GP wouldn’t initially fill in a DS1500 form to fast-track his application. “I applied for Universal Credit, but it took a full year to receive it; it was so frustrating,” he says. “I had assessments from people sat behind a desk who didn’t seem to know what MND was.” Martin felt there was a lack of communication between the assessors and those making decisions about his benefits. “It’s awful to be treated like you are not worth anything and feel like you are at the bottom of the pile. I have worked full-time, paid my taxes and it’s hard enough to live on benefits. It shouldn’t be so hard to prove you have MND and that you are not going to get better,” he says. SUPPORT It’s important that you rely on your support networks after an MND diagnosis. Martin lives on his own in Lowestoft, with family nearby. He has a mobility car to maintain some
Martin and Bella
Samantha and Kirsty
independence and loves looking after his Yorkshire Terrier Bella. He says: “I have had so much support from a lot of people, including the MND Association, and am positive about my life, but the last year or so battling the system to get the benefits I was owed has been very hard. It shouldn’t be like that.” Family and friends are also affected by an MND diagnosis. “My family had an incredibly terrible, stressful time and it definitely changed how we perceive things in the present,” says Samantha Mackenzie. When Samantha was 14-years-old, her mother was diagnosed with MND and her older sister Kirsty became their mother’s full-time carer. After two years, her mum became completely reliant on her family, and couldn’t talk after the third year. While Samantha’s family had the support of Marie Curie, a few family friends fell by the wayside. “I’d like people to know that the best and only thing you can do if you know somebody who is affected by this illness is to be there for them. Stay in contact,” says Samantha. Her advice to families is to appreciate what you have. “You’re told that it’s inevitable that a loved one will die after
two years, so there’s no right way to feel or to handle the situation. It’s out of your control so all you can really do is be unselfish. I’d also want to tell somebody in the same position as I was to never to take anything for granted. In my case, my mum was my best friend and we spent so much time together even before she was diagnosed. As we had such a close bond and were hanging out all the time, I don’t have any regrets. My mother lived for four years after her diagnosis and that time really flew by. Time is very precious: don’t take it for granted.” While her friends were more concerned with the normal things that teenagers are, like make-up and boys, Samantha was coming to terms with her mother’s health issues. “It made me more grateful for what I have and the people I have in my life as well as being more aware of the ugly things that can happen in the world,” says Samantha. RESEARCH More money needs to be put into research to discover the causes of MND and find a cure. “MND only affects two in 100,000 people each year: most people will never experience the disease itself or have a loved one go through it,” says Samantha. “My hope is that if people donate to MND research then one day there will be a cure, and if not a cure, then at least new medication providing a better quality of life.” Samantha and her sister Kirsty regularly raise money for MND Scotland, and she has signed up for the Scottish HalfMarathon to raise funds and awareness for MND Scotland. “I’m still not actually sure why I thought I was capable of running a half-marathon, but I do like a challenge!” says Samantha. “My family will be waiting at the finish line for me with a box of Krispy Kreme doughnuts so that will spark some motivation on the big day.” i
Motor Neurone Disease Association www.mndassociation.org www.mndscotland.org.uk
Support Samantha at www.justgiving.com/fundraising/inmemoryofjillmackenzie www.enablemagazine.co.uk
• 8 accessible luxury lakeside lodges in Devon • 5 Caravan Club CL pitches with electric hook up • Well stocked 1.5 acre coarse fishing lake • Heated indoor pool (Seasonal) • Games Room and Free WiFi • Orchard and woodland walk • Dogs welcome
01409 211140 firstname.lastname@example.org www.blagdonfarm.co.uk
MY GP AND ME A report by Dimensions, a charity for people with learning difficulties, has laid bare health inequalities for people with learning difficulties and autism
he statistics in the report My GP and Me are shocking – women’s lifespans are cut by 20 years if they have a learning disability, and men by 13 years. Half the people surveyed struggled with long-term constipation due to poor diet, limited exercise and medication, and weren’t attending cancer screenings. All of this is preventable – and a whopping 98% of GPs surveyed have asked for training to tackle these issues. Many of the health inequalities that people with learning difficulties face could be solved during an annual check-up. But for people who have had a negative experience with doctors and who have anxiety, going to an annual check-up or a cancer screening is a challenge. The amount of people with learning difficulties going to cancer and cervical screenings is well below the national average, and GPs have asked for more training in this area.
It’s a simple thing, but communication is key to resolving these issues. “I had the same doctor for 20 years,” says Jordan, who has cerebral palsy and learning difficulties. “He was really bad at understanding my needs, and communicating with me. I saw him regularly, and eventually got him to put reasonable adjustments in place, but it took a long time.” People with learning difficulties reported that the doctor was either talking solely to their support worker, parent or family member and not to them, or vice versa. It’s unsurprisingly that they felt uninvolved in their own health and the medical decisions being made. This means that vital information is not getting across – after all, only a patient knows how they’re feeling, but a support worker might be in a better position to talk about habits, or medication. When it comes to health, it’s imperative to get all the correct information. The problem of communication is
“Reasonable adjustments are the key to unlocking many of the health inequalities that people with learning difficulties face” Dave Robinson
SUPPORT just as keenly felt by GPs. “GPs have told us is that their biggest difficulty is communication, too,” says Dave Robinson, health and wellbeing manager at Dimensions. “A lot of doctors struggle to communicate with their patients. We need to work in partnership with families, support staff and the GPs, so everyone is involved.” Jordan says that doctors need to spend more time with disabled patients to make sure that they understand everything. “If you’re struggling to read something, or understand something, they haven’t got the patience or time,” he says.
Double appointments, not waiting in crowded waiting rooms, more accessible information – these are just some examples of some of the reasonable adjustments GP practices can employ to make going to the doctor easier for people with learning difficulties. “We’ve found that the GP practice staff really enjoy being involved in the process,” says Dave. “This means reasonable adjustments can be made without being too much of a demand on GP time.” As Jordan found out, if you change GPs, then the reasonable adjustments fall to the wayside and you’re in the position of
having to start all over again. “I’m at a new GP now and I had to explain to them all over again about reasonable adjustments,” says Jordan. The impetus should not be on disabled people to educate medical professionals on how to communicate with and treat their patients, but currently that's sometimes the reality. “Reasonable adjustments are the key to unlocking many of the health inequalities that people with learning difficulties face,” says Dave. However, the processes in place are changing. Information on reasonable adjustments are on summary care records which only their GP will have access to, but that’s set to change and soon all medical professionals on the system will have access to it. A small IT change that will have serious, and positive repercussions. Another issue is diagnostic overshadowing, which is when a GP overlooks any health problems in patients with learning disability and attribute them to being part of having a learning disability. This means other health issues are missed. However, there is a new template being issued to GPs for annual health checks and it’s very thorough. “If it’s used properly, a lot of overshadowing will be detected,” says Dave.
While it’s the responsibility of the medical practitioners to convey information in an accessible way, GPs aren’t receiving the proper training. 65% of GPs surveyed had less than one day of training on meeting the needs of patients with learning disabilities and autism. In a workplace where they and the NHS are under increasing pressure to cater to all their patients, with many GPs facing burnout, it’s no wonder they are stuck for time to explain to their patients. It has been recognised as a problem, and training is in the works. “We are offering 50 free whole practice training sessions,” says Dave Robinson. The sessions will be co-led by autistic people and people with learning disabilities who are experts by experience. “We’re working with the Royal College of GPs and other influential organisations and we’re hopeful that mandatory training will take place in the future.” For Jordan, this is welcome news. “I would like doctors to have more training to communicate better to patients with learning difficulties,” says Jordan. “To listen closely and to explain more clearly.” The bottom line is that everybody is working together to reduce health inequality for people with learning difficulties.
Enable July August 2018 A4 Advert 039_EN_JA18_ADV.indd 39 FINAL.indd 1
20/06/2018 12:48:49 25/06/2018 14:22
RETURN TO THE
Nearly two years have passed since Noel Conway ignited the debate on assisted dying. Noel argues that as a terminally ill man he should have autonomy to decide when and how he dies. But is the UK ready to grant his final wish? With Noel’s case in the Court of Appeal, Lorne Gillies revisits the deliberation
am pleased that my case will now proceed to the Court of Appeal. I brought this case not only for myself but on behalf of all terminally ill people who believe they should have the right to die on their own terms. Our voices deserve to be heard. I have accepted that my illness will rob me of my life, but how it ends should be up to me,” wrote Noel Conway in an open letter earlier this year. Living with terminal motor neurone disease (MND) and relying on the use of a ventilator 23 hours a day, Noel is spearheading the campaign for assisted dying. DIGNIFIED The leading discussion in Noel’s case is to provide those with a terminal illness a dignified end. However, the disabled community have apprehensions towards a potential change in law – rightly so. Many 40
disabled activists argue that the most vulnerable in our communities may feel pressured into going forward with assisted dying if they feel like a burden. However, if the assisted dying act was passed into law, this would not occur. Noel, with the assistance of Dignity in Dying, is calling for the proposed Bill to mirror the Death with Dignity Act (DwDA), introduced in the state of Oregon over twenty years ago. Enacted on 27 October 1997, Oregon made it legal for terminally ill people to voluntary end their lives through a self-administrated dose of lethal medication prescribed from a qualified physician. It’s a law that allows people control over their life and, ultimately, their death. BLURRED LINES On paper, the law would be a pioneering move for the UK. As with any issue relating
to best practice, there are many views on the assisted dying campaign. As a highly emotive topic that divides people, the law has entered a grey area in public debate. There is one fundamental confusion being made in the argument: referring to assisted dying as assisted suicide. These are two very different arguments. Shana Pezaro was diagnosed with multiple sclerosis (MS) ten years ago and is now a wheelchair user. Shana had apprehensions towards proposed legislation being brought forward by Noel and Dignity in Dying before she researched the topic. “The more I found out, the more I realised it’s not assisted suicide that they were talking about. The points get confused when it’s being discussed. It’s not about people who are living with an illness or disability – like I am – it isn’t about us being able to choose to end our lives. It’s simply about people who are dying and
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PIC: © TOM PILSTON
Shana Pezaro and campaigner Noel Conway
THE COURT OF APPEAL VERDICT WAS ANNOUNCED AFTER THE MAGAZINE WAS PUBLISHED
terminally ill. It’s about them having the choice of how and where and when they want to end their lives. It’s something I really felt passionate about and support,” explains Shana. Since Noel’s case was brought to the High Court on 17 July 2017, there has been heated discussion from both camps. After the case was rejected in the High Court, it was taken to a Court of Appeal where everyone is waiting with bated breath for a verdict. ACROSS THE WORLD Taking inspiration from the DwDA, the UK could follow in the footsteps of states like California, Washington, Colorado, and more recently Hawaii and Victoria in Australia. A fear for many in Britain is safeguarding to ensure vulnerable people are not coerced into a decision wrong for them. Taking into consideration DwDA’s success, there have been no cases of misuse, which is extremely promising. Tom Davies, director of campaigns for Dignity in Dying, says: “The more and more you see other places around the world that aren’t so very different to the UK [following the act], I think you’ll start to see people really wonder: ‘if my cousin who lives in
The ultimate safeguard is that the assisted dying law is only for people who are dying Canada can have this choice, or my aunt Prue Leith are just two people supporting who lives in Melbourne can have this Noel’s case. choice, why can’t I have this choice over “Having seen my brother suffer months myself because I live in the UK?’” Despite of agony and a horrific death from bone the lack of misuse in other countries, cancer, I know the horrors of present the fear of abusing the law is paramount practice. David’s doctors would not give amongst some members of the disabled him enough morphine ‘for fear he’d community. become addicted’ – this was three weeks “It was a big concern of mine as well before his expected death,” recalls Prue. when I started looking into it,” adds Shana. “The real reason, of course, was the fear of “Until I realised that the ultimate safeguard being prosecuted for unlawful killing if the is that the assisted dying law is only for extra morphine should hasten his death. people who are dying.” Even though We should not put patients or doctors Shana has MS, a condition that could in this untenable position. Terminally ill deteriorate, she highlights an important people deserve better.” fact: her condition is not terminal and for Both camps have eloquent and this reason she couldn’t put herself informed positions on Noel’s forward for assisted dying if she case and arguments for and We appreciate no longer wanted to live. against assisted dying. We can this is an emotive In the UK, many high-profile all sympathise with Noel’s topic. Tell us what celebrities have come out to condition, but time will tell you think on Twitter voice their support for Noel the direction the courts will @EnableMagazine and others who are terminally take. For now, Britain awaits ill looking for autonomy in their a response from the Court of final days. Sir Patrick Stewart and Appeal. www.enablemagazine.co.uk
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WIN a break for two at a Revitalise holiday centre We’re offering one lucky winner a three or four-night break for two at a Revitalise holiday centre. Enjoy a one of a kind mix of excursions, activities and live entertainment, combined with expert 24-hour nurse-led on-call care and full board accommodation
ancy a day trip to France, Belgium or the Isle of Wight? How about a behind-the-scenes tour around the set of Emmerdale? An inspiring museum or gallery? A relaxing day out fishing? Or the thrills of indoor skydiving? Whatever the perfect holiday means to you, Revitalise offers something for everyone. Whether you are into disco, motown, rock ‘n’ roll, the 80s, 90s, classic rock, country, comedy or cabaret, there’s a specially themed break for you. Explore your creativity by trying something new with daytime activities which include exercise classes, painting, dancing, boccia, karaoke, chocolate making, archery, baking and more. Whether or not a companion comes along too, you can leave the care to Revitalise, which has over 50 years’ experience catering for a huge range of support needs. Escape away to one of its fully accessible holiday centres in Chigwell in Essex, Southampton or Southport. We know the perfect break lies in the details. That friendly holiday care assistant who takes the time to get to know you and your support needs. That moment your evening entertainers perform your favourite song. That spoonful of lip-smacking dessert and a sweet sip of your signature tipple after a day spent out and about with new friends. That laugh from the special someone you care for… That’s the Revitalise effect.
HOW TO ENTER To be in with a chance of winning your perfect getaway, send your name and contact details to competitions@ dcpublishing.co.uk quoting Revitalise. All entries must be received by 3 September. Good luck! i
TERMS AND CONDITIONS: All entries must be received by 3 September 2018. Prize includes a three or four-night holiday at a Revitalise holiday centre of your choice for two people. Prize includes your required Care Support Package and any equipment you require during your stay. Prize excludes August, Christmas/New Year, Youth weeks and Alzheimer’s weeks. Transport to and from the centres not included. Prize must be taken by 26 January 2019. Prize is non-transferable. Only one entry per person and subject to availability. The publisher’s decision is final.
FIND OUT MORE
To find out more about each of the Revitalise holiday centres and all of the activities you can take part in, visit www.revitalise.org.uk
Days out for all with National Museums Liverpool
Open daily 10am to 5pm FREE ENTRY liverpoolmuseums.org.uk/whatson 043_EN_JA18_ADV.indd 43
From parks and museums to attending a music festival, there’s an accessible day out to suit everyone’s taste. We’ve rounded up our picks of the best ways to relax and have some fun this summer
THE GREAT OUTDOORS A Different World Festival Reading, 4 August
Attending a music festival might be something you have always wanted to do, but never thought was possible. A Different World Festival, held in Reading was set up in 2016 by parents Louise and Simon Turner for people who have a disability that prohibits them from attending a regular music festival. The event features a main stage, sensory tent, arts and crafts workshops. There’s even a massage tent if you want some extra relaxation. Headliners include rock bands Shardlake and Veglio, but the music isn’t too loud and there’s no flashing lights. The festival grounds have all been made accessible with Mobiloos and British Sign Language signers on site. Everyone is welcome and carers receive a free ticket. To find out who else is rocking the main stage or to buy tickets to the festival, visit www.adifferentworldfestival.co.uk.
Scotland’s first dementia-friendly park Kings Park, Stirling
Grab a picnic, sun cream, maybe an umbrella, and head for the outdoors. Take a day trip and visit Scotland’s first dementia-friendly park. Stirling’s Kings Park has been transformed by Paths for All to allow those with dementia to enjoy and feel safe in outdoor spaces. Hand rails, benches and dementia-friendly
signage have been added to assist those with dementia. Collect a map at the entrance to the park and plan your route or pinpoint rest stops along the way. The park has a picnic area, peace of mind garden, walks and main paths that are wheelchair accessible. To find out more visit www.whatsonstirling.co.uk/listings/ kings-park--stirling.
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LIFE LET’S GET CULTURED
Museum of Liverpool
Various locations, Liverpool
PIC: DAVE JONES PHOTOGRAPHY
Museums are the perfect place to spend rainy days or to take the kids during the summer holidays. There’s plenty of fun days out this summer at National Museums Liverpool’s eight museums and galleries. All museums and galleries are wheelchair accessible and signed up to the Autism Charter through Autism Together and the Connect to Autism scheme. Experience almost 1,000 years of Chinese history at the China’s First Emperor and the Terracotta Warriors exhibition with objects that have never been on show in the UK before. Alternatively, see John Lennon and Yoko Ono’s story told in their own words at Double Fantasy – John & Yoko at the Museum of Liverpool. This museum hosts weekly quieter morning visits for autistic adults and children, and people with learning difficulties in its Little Liverpool gallery. Sensory resources and ear defenders are available along with Makaton nursery rhymes. Find out more about these events and more at www.liverpoolmuseums.org.uk.
Early bird and night owl sessions are run so families or individuals who need a quiet environment can enjoy the museum without the hustle and bustle of the public
Science Museum London
Learn about superbugs, visit the interactive gallery or take a trip to space with astronaut Tim Peake at Science Museum London. The museum is wheelchair-friendly with lifts and accessible toilets. Wheelchairs are also available to borrow when you visit. For those with sight or hearing problems there is digital boards, Braille labelling, audio descriptions, subtitles and British Sign Language events.
The museum also caters for autistic people and people with learning difficulties: early bird and night owl sessions are run so families or individuals who need a quiet environment can enjoy the museum without the usual hustle and bustle of the general public. To find out more about accessibility at the museum, or to check out what special exhibitions are coming up, visit www.sciencemuseum.org.uk.
Lake District Disabled Holidays
Mitchelland Farm, Cumbria Turn an accessible day out into a holiday and enjoy bird watching or time with the animals at Lake District Disabled Holidays. Located on a working farm near Bownesson-Windermere, the log lodges have been made fully accessible by the addition of wet rooms, hoists, a Hi-Low electric bed, riser chairs and wide doors for wheelchair users. A ceiling track hoist has been installed in the new Log Retreat, built and ready
for 2019 bookings. The cabins sleep up to four people, enabling families, disabled guests and able-bodied people to enjoy a comfortable and scenic holiday at Mitchelland Farm. To find out more about the facilities or to book your next holiday, visit www. lakedistrictdisabledholidays.co.uk or call 015394 47421.
For more information on accessible days out visit www.motability.co.uk to view their Rough Guide to Accessible Britain. www.enablemagazine.co.uk
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Spotlight shines bright on
Creativity is a wonderful gift and it’s being accessibly shared on stages across Britain. Lorne Gillies stands under the bright stage lights to see how disability is changing the face of theatre
emastering the greats, exciting adaptations to representation – disability in the arts has had a facelift. Granted, there are still issues in Hollywood including disabled characters being played by non-disabled actors, but times are changing.
stages, even now,” adds Kay Ann. She emphasises the importance for disability arts to further recognise and encourage acceptance for more people with learning, physical or sensory disabilities to pursue their passion of being on stage. It’s not just the thrill of getting on stage that Lung Ha Theatre Company participants enjoy, the confidence that it brings their daily life is a welcome addition. Teri Robb, who has been acting with the company for nearly 11 years, passionately says: “Being on stage is such a good feeling and it’s great when you’ve got a receptive audience – it’s fun. I feel more confident now with what I do for myself, I wouldn’t have done this in front of an audience before.”
PICS: © PETE DIBDIN; ANTHONY ROBLING
“I’ve been coming here for years. It all started with Mrs Mackechenie Meets the Megaloths, the first show I was ever in, and I fell in love with it,” explains Kay Ann Jacobs, who has been acting with Edinburgh based Lung Ha Theatre Company since her debut production in 1987. “I like it because I can show the audience that the world is a bigger place. It doesn’t matter who you are or what you are. I feel more confident: it’s nice to meet new people.” Lung Ha Theatre Company is a professional group of actors with severe to moderate learning disabilities. Since forming in 1984, there have been more than three hundred performers involved in over forty original productions with the company. The participants feel a sense of ownership and pride when performing, alongside the opportunity to connect with likeminded people. Attending an acting session with the group I found the room immersed with enthusiasm: I felt the passion, bond, and dedication that flowed into each task. The session was a real community of people who love theatre, acting and have a thirst for the arts. “More people should get involved to promote disability throughout the world because disability isn’t shown in a positive light. You look at TV and films and it’s not shown as a positive. We live in 2018 and it’s still in the barrier
Behind the scenes, there are theatre companies across Britain preparing for accessible performances of many classic tales and original plays. One organisation has gone the extra mile, showing commitment to people living with dementia by pioneering dementiafriendly performances since 2014. West Yorkshire Playhouse has a dedicated team working together to adapt performances, making specific showings accessible and comfortable for people
More people should get involved to promote disability through the world because disability is not shown in a positive light www.enablemagazine.co.uk
Dunford for the stage. Still Alice talks about the challenges of dementia, and it’s a really honest portrayal. It’s uncompromising in how it tells the story. We had Wendy Mitchell, someone who is living with early onset dementia, as a consultant working with the cast and the directors how to portray the story of Alice,” says Maggie. The show was just one of many productions showcasing life with dementia. It’s performances such as Still Alice and theatre groups like Lung Ha Theatre Company which showcase the importance of disability in the arts so eloquently.
From disabled performers to adaptations
of performances for a disabled audience: the time to shout about disability arts is now. Regardless of ability, people with a passion to either be under the glittering lights of the stage, behind the velvet red curtain or in the audience enjoying a production adapted to their needs, the opportunity for disability to be under the spotlight is a must. It brings people together. “We found that our Christmas shows are a great opportunity for families to go and see the theatre together. To go and feel supported, safe and if you’re affected by dementia as a family member or supporter, it’s also a way for you to still go to the theatre together, which is why I think it is really, really important,” adds Maggie. Memories of going to the theatre will last a lifetime. Tales of being on stage as the leading character is a life defining moment for an adored passion. Disability arts is taking centre stage one production at a time. i
FIND OUT MORE
West Yorkshire Playhouse www.wyp.org.uk
Lung Ha Theatre Company www.lungha.com
PICS: © PETE DIBDIN
living with dementia. Last spring, West Yorkshire Playhouse debuted its premier dementia-friendly festival, Every Third Minute Festival. Every three minutes someone begins living with dementia. “A lot of what we’re trying to promote is that people with dementia can have a good time. Being a supportive environment and culture, it’s possible to live well with dementia. There are lots of other people living with this condition or affected by it, so people saw the festival as a way to feel less alone, and feel that there are so many creative opportunities for people,” explains Maggie De Ruyck, older people’s programme manager at West Yorkshire Playhouse. The festival followed the ethos the Playhouse has implemented about providing a safe space for people living with dementia to enjoy the theatre. After all, having dementia, or any other disability doesn’t mean the thrill of watching a story come to life is any less entertaining or enjoyable. Every Third Minute Festival (which ran from 9 February to 31 March) was curated by people living with dementia, had many dementiafriendly performances and productions highlighting life with dementia, the most prominent of which was Still Alice. “Still Alice was adapted by Christine Mary
WINTER THEATRE SEASON Sam Wanamaker Playhouse
SUMMER THEATRE SEASON Globe Theatre
Year-round guided tours and exhibition Public talks, workshops and events for all
email@example.com 020 7902 1409
Discover an award winning holiday resort
Landal Gwel an Mor
by the sea in Cornwall - designed to set new standards in accessible accommodation Landal Gwel an Mor Resort has been named the best holiday park in the country in the Visit England Awards 2018. We think you will agree that our accessible accommodation and facilities are amongst the best you could find anywhere. Our Scandinavian style holiday lodges are registered as NAS M3 Assisted Living standard. They have ground floor wheelchair access, stylish twin bedrooms with electric bed, a wet room style bathroom, a living / dining area and a wonderfully equipped kitchen. Sleeping six, they are perfect if you are holidaying with family or friends. Our designer ‘state of the art’ Assisted Residence Lodge, which sleeps five, features wheelchair access throughout, NAS M3 rated kitchen, accessible wet room and an H hoist system – plus private sun deck and log burner. All our five star resort facilities are designed to offer full wheelchair accessibility throughout. Experience our fabulous indoor swimming pool (which has a hoist), our Terrace Restaurant and our unique Feadon Farm conservation centre, where you can meet foxes, owls and birds of prey.
www.gwelanmor.com or speak to our friendly team on 01209 842354 and they will help you plan your dream holiday in magical Cornwall! Find out more at
Products that help to make life more accessible Flexzi – a strong, adaptable gadget and tablet support system. Available with stands or clamps, tablet cases and switch or gadget mounts Our switch-adapted toys help children’s development through play – we sell a great range of toys modified to work with accessible buttons or switches 01372 725203 firstname.lastname@example.org
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Kids’ From beds to bubble machines, we’ve rounded up our top picks of kids’ products on the market right now
THE TARTA KID
Jiraffe, price available on request, www.jiraffe.org.uk The Tarta Kid is an innovative seating solution designed to correct and maintain postural alignment for children aged between 8 months and 3-years-old. Several base options make the Kid seat unit a truly flexible supportive seating solution perfect for a range of situations; from highchair to pushchair or dinner table. The system is adaptable to each individual child during their growth and development, maximising efficiency.
HEIGHT ADJUSTABLE BEARHUGZZZ BED
Kinderkey Healthcare Ltd, £3,385, www.kinderkey.co.uk The unique Bearhugzzz bed provides a soft, yet strong and safe environment for sleep, play and relaxation on a height adjustable platform. Walls are made from soft foam with a waterproof, wipe-clean, antimicrobial fabric and are available in a range of colours and patterns. Suitable for adults and children, the Bearhugzzz Bed is designed for kids with autism, angelman syndrome, epilepsy or learning difficulties.
RNIB, £8.34, www.shop.rnib.org.uk This assistive technology device is perfect for school and getting homework done. The calculators have a built-in speech synthesizer and speak out each key pressed as well as the answers to math problems. The tools can be used for those who are visually impaired, but it can also be helpful for kids with learning difficulties who find listening, rather than seeing, an easier way to learn.
MERU BUBBLE MACHINES
MERU, £13, www.meru.org.uk/shop Bubbles! Who doesn’t love bubbles? MERU now offers a range of bubble machines adapted for use with accessible easy-to-use switches or buttons. The bubble machines can help young children with disabilities interact with their environment by producing a cloud of beautiful bubbles. The machines can help children to learn about cause and effect - the ‘if I do this, then this happens’ stage of development.
COLOUR CHANGING MOOD BLOCKS
Glow, £11.95 (pack of 4), www.glow.co.uk Mood lighting is the perfect addition to sensory play. The cubes change colours gradually, creating a soothing sensory environment. Their size makes them easy to pick up for playtime or a good alternative to a bedside lamp. Sensory lights have been found to have a calming affect for autistic children, but are a great addition to any child’s room.
Healthcare We’ve rounded up our pick of healthcare products to make your personal care more simple, supportive and convenient
ID INNOFIT PREMIUM M PLUS
Ontex, £13.32 for 14, www.id_direct.com The new iD Innofit premium range includes an all-in-one slip on product with a 2-in-1 design intended for managing moderate to severe incontinence. Specifically designed for thinness with a close pant style fit, but a high level of absorption, you can slide the comfortable underwear up and down when visiting the bathroom or easily change the product without removing any clothes.
CONISTON SWIVEL BATHER
Co-operative Mobility, £95.94, www.completecareshop.co.uk The Coniston Swivel Bather is a great alternative to the traditional bath board, and provides back support. Easily width adjustable to fit on to wider baths, the swivel bather has a pivoting base that allows the user to turn up to 90 degrees making access to the bath easier. No extra equipment or tools are required to fit the seat to the bath making it removable in seconds.
MEM-X MEMORY AID PENDANT
NRS, £117.86, www.nrshealthcare.co.uk The Mem-X Memory Aid Pendant assists you with pre-recorded personalised audio messages. The device prompts you to press a button to hear the audio. It can be used to remind you to take medication, go to an appointment or just remember a special occasion. Up to ninety messages can be stored on the device, providing you and your loved ones with piece of mind.
SmartCRUTCH, £74.99-£114.98, www.smartcrutch.uk The SmartCRUTCH is best suited to longterm crutch users to save the wrist, hands, shoulders and arms from pain and strain. The innovative design allows users to change the angle of the cuff and places the body weight on to the forearm whilst promoting a natural posture during use. This allows the user to remain mobile for longer before fatigue sets in. The SmartCRUTCH comes in 12 different colours and designs.
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Tel: 01377 241700
Alfred Bekker API Ltd is a credit broker (not a lender) in relation to this financial promotion. Motability scheme vehicles are leased to customers by Motability Operations Ltd (registered company no. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the higher rate Mobility component of Disability Living Allowance, the Enhanced rate Mobility component of Personal Independence Payment, the War Pensions Mobility Supplement, or the Armed Forces Independence Payment and applications must be made with participating dealers between 1st July 2018 and 30th September 2018. Prices are correct at time of printing, are subject to availability, and may change.
SKODA Skoda takes an eminently sensible approach to the small SUV and Alisdair Suttie finds the result is simply the best car in its class
Pull on the wide-opening front doors of the Karoq and you know it’s going to be easy to live with. The driver’s seat has height and lumbar adjustment in every model, and combined with the reach and rake steering wheel movement it means that any driver can get comfy. The driver is afforded excellent forward vision and you also have superb side and over-the-shoulder line of sight, which is not always the case in this type of car. As for the dash, it’s easy to read, though you need to step up from the base SE version if you want the larger
infotainment screen with more functions and features. In the rear cabin, the Karoq easily accommodates a pair of adults or three young children. All get triple-point belts and there are also ISOFIX child seat mounts. The SE-L has a trio of individual chairs that each slide, tilt and fold independently. Again, there’s good vision for rear passengers and a broad door aperture. The boot is not quite the biggest in the class, but it’s uninterrupted shape makes it easy to store bulky items and the load lip is lower than most rivals.
Driving Picking between the 1.0- and 1.5-litre turbo petrol engines depends on where you drive the most. If it’s around town, the smaller motor is ideal, but the 1.5 is the better all-rounder and there’s not much between the pair for economy or emissions. You can also have both with six-speed manual or automatic gearboxes, with the latter well suited to each. Skoda also offers 1.6- and 2.0-litre turbodiesel engines, and you’ll want the larger of these if you need four-wheel drive. Both are refined and easy on fuel for long distance driving. Aside from punchy, quiet powertrains, the Karoq’s big advantage over its rivals is the cushy, smooth ride. On any road, it glides along and it’s also very quiet, which makes it a calming car to be in. It can still hustle along a twisty road and cruise the motorway with ease.
Find your ideal car Rica, a consumer research charity working with older and disabled people, has a unique online car search with key measurements and fact sheets. Check it out online at www.rica.org.uk/content/ car-search
On any road, it glides along and it’s also very quiet, which makes it a calming car to be in Equipment You can pick from three trims, starting with the SE that comes with 17-inch alloy wheels, black roof rails, privacy glass, rear parking sensors, automatic emergency braking and seven airbags. You also enjoy cloth upholstery, air conditioning, automatic headlights, rear picnic tables and even an umbrella stored under the front passenger seat. Move up to the SE-L and you gain bigger wheels, adaptive headlights, front parking sensors and reversing camera, keyless entry
and ignition, heated front seats, 8-inch touchscreen infotainment and Alcantara upholstery. For the Edition, Skoda provides 19-inch alloys, panoramic sunroof, metallic paint, leather seats with electric adjustment for the driver’s chair, leather seats and a 9.2-inch dash screen with sat-nav. This model also has Lane Assist, Blind Spot Detection, Traffic Sign Recognition and an electrically opening boot that works from the key fob to open and closes at the press of a button.
Some rivals might be more dramatic to look at, but none match the Skoda Karoq’s blend of comfort, space, quality and value. It makes for a calm and smooth journey with all the bells and whistles you could want.
Motability Customers The Skoda Karoq is available through the Motability Scheme, starting from your total weekly allowance plus zero Advance Payment. Find out more about the Scheme at www.motability.co.uk, or call 0300 456 4566.
DIARY 28-31 AUGUST
A CLOWN SHOW ABOUT RAIN
AUTSCAPE 2018: EXPLORING INCLUSION PIC: ©MARCIO RODRIGUES/MPIX/CPB
Pleasance Dome, Edinburgh www.silentfaces.co.uk Part of this year ’s Edinburgh Fringe a festival, A Clown Show About Rain is th heal tal men t abou edy physical com ’. and what it means to ‘brave the storm s, Face t The show is new from Silen an integrated theatre company of disabled and non-disabled performers. It follows three sailors at sea, looking at the unpredictable nature of mental ical health through silent clowning, phys . eatre e-th danc comedy and
WORLD PARA ATHLETICS EUROPEAN CHAMPIONSHIPS
Berlin www.paralympic.org This year’s Para Athletics championships is taking place in the German capital. Long jump, shot put, javelin and relay are just a few of the sports that will be played during the week-long event. Grab your own tickets and head along to the event or watch live on TV as Para Athletes from all over the world compete.
Tonbridge School, Tonbridge, Kent www.autscape.org Organised and run by autistic people for autistic people, Autscape is no normal conference. This year’s theme is exploring inclusion. There will be discussions and presentations on including autistic people in social environments and how communities could better accommodate everyone. There will be lectures, workshops and structured discussions alongside evening activities that give everyone a chance to socialise and relax.
PARALLEL FUN RUN
George Square, Glasgow www.parallellifestyle.com This year’s Parallel fun run event is taking place in Glasgow’s George Square complete with free mini festival and fully accessible runs. Get friends and family together and take part in the main 5km, 1km or 100m, or sign up for the Super Sensory 1km. Runs are open to all ages and abilities with no cut off times. After you’ve worked up a sweat, head for the mini festival’s main stage to see comedy, music and theatre or grab a bite to eat in the food and drink zone. The event will be split into different zones including mobility, workshops, travel and leisure, and a family zone. It’s completely free to attend, but make sure you reserve your place in advance.
DISABILITY AWARENESS DAY
Walton Hall Gardens, Warrington www.disabilityawarenessday.org.uk Disability Awareness Day, or DAD, is the world’s largest not-for-profit voluntar y led, disability exhibition. DAD focusses on what disabled people can do, not wha t they can’t. Visitors can expect to see over 250 exhibitors including equipment supp liers, transport, holidays, leisures, employm ent, support groups and services. Plus ther e’s a sport zone which includes scuba divin g, as well as an arts marquee, a centre arena and family entertainment to make it an enjoyable day for ever yone.
Nutley Edge Activity Breaks
Quality or Price? Thereâ€™s no need to compromise!
The Juvo Powered Wheelchair provides outstanding quality at an affordable price! With its modular system combined with front and newly mid wheel drive options, the Juvo offers great directional stability, indoors and outdoors. The front, rear and mid wheel drive options, available on the Juvo B5 and B6 models, provides incomparable driving characteristics with the user benefiting from intuitive movement, maximum stability against tipping and optimum weight distribution. Visit www.ottobock.co.uk/Juvo or call 01784 744 900 to find out more. Affordability meets quality.
#TheBestKeptSecret 1172 Juvo Advert Update.indd 1 057_EN_JA18_ADV.indd 57
14/06/2018 16:15 25/06/2018 16:20
THE ADVENTURE IS OUT THERE A single moment can turn life upside down. Adjusting to living with an amputation can seem like a daunting mountain to climb, but the journey to the top is smoother than it was ten years ago. Life after an amputation is just the beginning: not the end
eturning from a golf trip in the Lake District, Jeremy Wood was involved in a car crash that saw him lose his right leg above the knee and his left below. He was the only one to be seriously injured in the accident, and is grateful that no one else was hurt. An enthusiastic and optimistic man, Jeremy’s accident doesn’t hold him back, and he faces everything with a “glass half full” mantra. An intrepid traveller, some of his high profile achievements include crossing Australia, and helping to train and plan strategies for the British Paralympic Alpine Ski Team. Jeremy has ensured a lifetime of adventures has been packed into the 28 years since his crash, in part thanks to Ottobock’s C-Leg 4 microprocessor knee. EQUIPMENT “If you want to do something in life, go for it. Don’t be afraid to ask – this goes for any disability. Obviously, things aren’t necessarily easy, but you don’t
get anything easily, you’ve got to work at it. You’ve got to believe you can do it and if you believe you can, you can be successful in work and play,” encourages Jeremy. Jeremy’s adventurous nature has been aided by his C-Leg 4 microprocessor knee. “Having the equipment around you makes it so much easier, and the C-Leg allows you to be normal in that sense,” he says. “It removes one of those barriers that can push you back a bit if you’re not feeling confident.” SUPPORT It wasn’t until 2002 that Jeremy stopped wearing a mechanical prosthesis and began using the world’s first microprocessor knee. Transitioning from a mechanical prosthetic to the C-Leg allowed Jeremy to feel even more confident and comfortable in his work and personal life. “No matter how good mechanical legs are, you have to put extra thought into where to physically put your leg: making sure you distribute weight properly, that your foot is on the correct piece of ground and not standing on a gap or a bit of uneven ground. Mental tiredness is a big thing with being an amputee, as well as physical,” explains Jeremy. “When I tried the early microprocessor controlled knees, it completely changed things for me. I could actually put weight on each leg without feeling that the one with the false knee would The C-Leg collapse under me because certainly made a it had the computerised difference to my chip in it.” life by making it as At first the original natural as possible C-Leg required a lot of updates resulting in many for me to travel lengthy hospital visits, around the world taking up a lot of time. and carry on Now, with funding available from NHS England, Jeremy can have his adjustments made in
under an hour and only has to visit the hospital every two years. The innovative function of the C-Leg and Ottobock’s forward thinking processes has allowed Jeremy, and many hundreds more, to feel self-assured and content, but most importantly, able to live life to the fullest. RETIREMENT Through the ease of use from the C-Leg, Jeremy’s life took on a different direction. The keen winter sports fan soon got involved with Disability Snowsport UK. In 2004, he took on the role of performance director to rebuild the British Paralympic Alpine Ski Team. Heading to the 2006 Turin Paralympics was the beginning of Jeremy’s journey to far off lands. “The C-Leg certainly made a difference to my life by making it as natural as possible for me to travel around the world and carry on, and now, to relax and enjoy retirement,” Jeremy adds. Relaxing in his golden years with the possibilities available to him thanks to the C-Leg, Jeremy has been able to fulfil a commitment made to his father. Spending quality time together can be difficult when you live on different continents as Jeremy’s father lives in Australia. The C-Leg made the trip of a lifetime possible.
After he retired, Jeremy, his father, and Jeremy’s son circumnavigated across Australia. Thanks to the ease of use from his prosthetic and a dash of positivity, Jeremy was able to drive and even jungle surf which included a zip line through a rainforest. “Be as positive as you can. Things always look grim, but it really doesn’t stop you from doing anything. If anything it will open up a few doors that you didn’t ever think you would get involved with or existed for you,” says Jeremy. “I certainly never thought that I would be running the British ski team and go to the Paralympic Games – that just wouldn’t have been on my radar before I was disabled. As for skiing, it was something I looked at on the TV, not something I thought I would ever be part of. That’s part of the journey: you get some additional inner strength to do new things.” Jeremy and his wife are planning their next adventure together: enjoying new and exciting cultures as they explore Vietnam and Thailand. Going through a traumatic experience that results in amputation can be a daunting challenge to overcome. Thankfully, with the advanced equipment on offer with Ottobock and the C-Leg, life does not end at amputation.
FOR MORE INFORMATION Ottobock
www.ottobock.co.uk 0178 474 4900
The Limbless Association
www.limbless-association.org 0800 644 0185
The Douglas Bader Foundation
www.douglasbader foundation.com 0208 748 8884
KEEPING ACTIVE THIS SUMMER Exercise is good for your mental and physical wellbeing. When you exercise, your brain releases endorphins: your body’s natural painkillers that help to boost your mood. We bring you some fun ways to get fit
SKYDIVING Tandem parachuting has made the thrillseekers’ sport accessible to everyone who loves a rush and isn’t scared of heights. Strapped to an instructor who controls the dive and parachute, special equipment is available to help lift your legs if you have limited mobility. Skydiving companies, like Skydive Buzz (www. skydiveukltd.com) have centres across the country, and specially trained instructors to help those with a disability. All centres require a signed clearance letter from your GP before you can book your session, so plan your skydiving experience in advance. For more information on accessible skydiving, and a list of locations that provide tandem parachuting visit the British Parachute Association (www.bpa.org.uk).
GARDENING Not all workouts involve breaking a sweat: gardening also counts as a form of aerobic exercise. An afternoon spent planting, pruning or landscaping can improve muscle strength, finger dexterity and blood circulation, and it’s also therapeutic. A range of assistive equipment is available for use in the garden from adapted tools to raised beds. It can also be a great way to socialise: get your friends and family out in the garden, join a local gardening club, or rent a plot at your local allotment and swap tips and tricks with others. If you don’t have access to an outdoor space, why not plant herbs on your windowsill? For more information on equipment, the benefits of gardening and what you can grow in the space you have available, visit www.accessiblegardens.org.uk or www.gardeningfordisabledtrust.org.uk.
Always consult your GP before starting a new sport
YOGA Yoga is well known for being meditative and calming, but it also helps build muscle strength and endurance. It can be tailored to suit all ranges of ability and can be started from any level of fitness to improve flexibility, dexterity and balance. Yoga comes in many different forms, like Hatha yoga which aims to prepare the body for meditation or Iyengar yoga which gives you better posture. Adaptive yoga is normally a mix of styles and has been specially formed to help those who have a disability, including wheelchair users, amputees and people with PTSD. Chairs are often used in adaptive yoga to make it accessible for everyone – you can even do it at your desk at work. To find your nearest yoga class visit www.yogahub.co.uk or www.yogability.org.uk.
SPORT GYMNASTICS Gymnastics isn’t all backflips and cartwheels: activities can be adapted to suit different levels of ability and no special equipment is necessary. The sport improves your coordination and muscle strength, but most importantly – it’s fun! Artistic gymnastics, using vaults, bars and floor exercises, and rhythmic gymnastics, using hoops, balls and ribbons are the most popular forms of gymnastics. It can all be adapted to make it more accessible by using stronger bars, cushioned floors, or brighter ribbons for sensory activities. You can even try trampolining if you’re adventurous! Programmes like British Gymnastics’ I’M IN have made the sport accessible to all and are training coaches to support people of different abilities. To find your local gymnastics club or sign up for an I’M IN taster session, go to www.british-gymnastics.org.
SWIMMING Being in the water is a great low-intensity exercise that works all your muscles. The buoyancy supports you, making it easier to exercise without putting any pressure on your joints, muscles and spine. For a good workout, try a class like water aerobics, aqua Zumba, or aqua jogging which normally involves light weights. To find your local accessible pool, club or a specialised instructor, visit www.swimming.org.
Gymnastics isn’t all backflips and cartwheels: activities can be adapted to suit different levels of ability and usually no special equipment is necessary CYCLING Hand cycling, tandem cycling, e-cycling, which is when an electric bicycle is used to aid movement, have made riding a bike one of the most accessible activities. It’s a hobby that gets you outside in to the fresh air, exploring the city or the countryside and can be done solo or with family and friends. Different adapted bikes are available like tricycles, which provide extra balance. Recumbent cycles are available with
seats positioned lower and with more back support, taking the strain off the rider’s legs and providing more balance. Companion cycles are a type of tandem bike which allows cyclists to sit side by side, rather than one behind another. For more information on the different bicycles available and where you can test them, visit www. getcycling.org.uk, or to find a cycling club near you go to www.britishcycling. org.uk/clubfinder.
FIND OUT MORE
To find out more about what sports you can get involved with and how, visit www.disabilitysportfinder.org.uk
The Thistle Assistance Card is available in a variety of formats and languages. For more information and to have a physical card sent to you please visit or call your region:
www.sestran.gov.uk 0131 524 5150
www.tactran.gov.uk 01738 475775
www.hitrans.org.uk 01463 719002
Start using TODAY - Search for Thistle Assistance Card and download now!
The secrets of
Nutrition Obesity is an issue in the disabled community. From ease of use to a general lack of understanding on healthy eating, it can be a struggle to maintain a healthy weight. Living with a disability doesnâ€™t mean a good nutritious diet is out of the question. Itâ€™s easier than you think
ne of life’s treats is relaxing with a cup of tea and a slice of cake and there’s nothing wrong with that. However, when sweet treats like cake become too frequent and lead to excessive eating or only having unhealthy, processed meals for breakfast, lunch and dinner, it can become problematic. We’ve heard for years about the importance of a healthy diet. This doesn’t mean fad diets that keep celebrities thin or a weekly detox from chocolate and carbs. It means finding a balance of nutrients and calories that work for your body and health. NUTRITION Unfortunately, the disabled community is more prone to obesity and unbalanced diets due to individual circumstances. Obesity is prevalent as recent government figures reveal that 31% of men and 45% of women with a learning disability are in the severe category of obesity in comparison to people without a learning disability. Lizzie McGregor changed her eating habits when she began to feel uncomfortable in her clothes. Living with glaucoma, post-traumatic stress disorder, type two diabetes and fibromyalgia, alongside a mild learning disability, Lizzie found shopping a problem as it was challenging reading packaging and following a recipe. Similarly, her mental health conditions led her to comfort eat and rely on pre-packaged food and unhealthy snacks. “I felt uncomfortable in my clothes and knew I had gained a lot of weight and began to worry about being healthy for my daughter,” says Lizzie. “I always felt tired so the doctor and community nurse spoke to me about how losing weight would help and introduced me to a dietitian for learning disabilities.” For people living with a disability eating, unhealthily can become an accidental habit. From relying on snacks for solace to carers having a lack of knowledge about healthy eating, it can become a vicious cycle. “A lot of people will go for cheaper, less healthy foods than they’re used to. When people go out they may be more likely to go for fast food. If
One-to-one sessions allowed me to talk about my diet and get alternative ideas that I could manage support staff are taking someone out, it’s quite common to take someone for a cup of tea and a walk, whether they’re in a wheelchair or they can walk. That creates a habit where that cup of tea will come with a cake,” explains Dalhia Campbell, a registered dietitian and British Dietetic Association (BDA) member. “If that person isn’t really able to make an informed choice – many people would like to have a cup of tea and a cake, but we know that we shouldn’t be doing it too often – it can be difficult. The pull of that cake is really strong and it can be difficult to say no. It becomes an expected part of the activity.” This habit can become a hard one to break. However, working with a dietitian, as Lizzie did, can make the process of learning about healthy eating less overwhelming. GUIDANCE Teaming up with a dietitian is the healthiest way to find out more about the changes which need to be made to help your lifestyle, and sustainable ways you can make them. A dietitian is a qualified health professional that can assess, diagnose and treat dietary or nutritional problems. Regardless of current weight, activity levels or ability, a dietitian can assist on the journey to a healthier lifestyle. After being introduced to her dietitian through her doctor and community nurse, Lizzie worked to find a healthy and balanced diet that was right for her. After all, everybody has a different shape and size, which means that there isn’t a meal plan that suits everyone. “One-to-one sessions allowed me to talk about my diet and get alternative ideas that I could manage. Small steps and achievable goals kept me interested
and motivated so didn’t feel like I was failing. She took time to look for foods in supermarkets for me and used pictures to help me look for healthy choices when shopping.” Making goals achievable will mean you don’t get disheartened if you don’t reach a certain goal in the timescale you have given yourself. It’s all about small, steady and manageable changes. “The main thing is to make changes really gradually,” adds Dalhia. “Start making simple changes and gradually phasing in change. For example, change sugary drinks to drinks without sugar, change chocolate biscuits to plain biscuits (and start to reduce these), start adding in a bit more fruit instead of the biscuits and gradually over the months there will be more fruit as a choice.” HEALTHY Pairing healthy choices with light to moderate exercise – depending on ability levels that your doctor can advise on – is the guaranteed secret to unlock a healthier lifestyle. It can be easy to get sucked into fad diets and quick fix products or miracle drinks, but they don’t work and are unhealthy. The simplest and healthiest way to lose weight and feel fitter and healthier in yourself and maintain the change is to eat a balanced diet. Dalhia concludes: “The main thing to think about is what foods people are eating. Are there any foods that are high in fat and sugar that people are eating too much of? That includes crisps, biscuits, cakes or sugary drinks. Then have a think about how much fruit and vegetables you eat in a day and see where you can eat more. If you can do those two things then a lot of the other things fall into place.” Living a healthier lifestyle is not as scary as it might seem at first. Help is out there. And you can still have a slice of cake – on occasion. i
FIND OUT MORE
For advice on a healthier lifestyle contact your GP who can direct you to a dietitian, get support from the NHS at www.nhs.uk
Ambition As the first amputee to win the Mr England competition, Jack Eyers is eager to inspire others and alter how people look at disability
PICS: © 2018 AEPHOTOS.CO.UK/A EDMONDS; THIRD AVENUE PHOTOGRAPHY
o start with my mobility was fairly decent: I used to play football, rugby, cricket, swim for county and I even used to ride horses,” Jack remembers fondly. “As I got older, my condition became worse and it started to affect me physically and mentally. I was in a dark place in my childhood and I was a little bit lost. I didn’t have any role models and there was nobody with a disability in the media at this point I could look up to.” Born with proximal femoral focal deficiency (PFFD), a condition that affects the femur and hip joint, Jack’s condition slowly became more debilitating as he grew older, and stopped him doing activities and hobbies he once enjoyed. REPRESENTATION Before Jack elected to have his right leg amputated in 2000, he felt there was no one with a similar disability he could look to for guidance. A chance meeting with Louie Brownsell – an amputee stuntman and actor – at a prosthetic limb centre provided the affirmation that Jack had been looking for. After speaking with Louie, Jack decided his best course of action was to elect for leg amputation. Jack adds: “He was my first ever inspiration. He was using his disadvantage as an advantage.” At age 16, Jack had his leg amputated and he declares it was the best decision he could have made. Jack took encouragement and inspiration from Louie and eventually joined an agency specialising in amputee work and became a personal trainer. EYE ON THE PRIZE From participating on film sets to walking the runway during New York Fashion Week, Jack is creating new attitudes to disability. In 2017, Jack became the first ever amputee to win the coveted Mr England campaign and the platform has allowed his love for sport to flourish. Now wearing an Endolite KX06 prosthetic
It’s making people realise and understand that there are opportunities out there
knee from Blatchford, Jack has no barriers. He explains: “When my disability got worse, it really affected my confidence. It was almost like a ball and chain around my leg: I was dragged down by something attached to me. After it was amputated, I felt this massive lift. I had more opportunities because of the technology that’s out there.” Jack has been selected as a member of Team GB’s Paracanoe team and is now working towards Tokyo 2020. As a passionate sportsperson, Jack is aware how beneficial it is to showcase the Para athletes to everyone across the world. “Being a role model, you become someone’s vision board. You can provide someone with a little bit of hope and a little bit of guidance,” says Jack. “It’s making people realise and understand that there are opportunities out there.” i
FIND OUT MORE
Meet your potential with Blatchford by visiting, www.blatchford.co.uk or call 0114 263 7900
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If You Are Over 55 And Own Your Home Then You Can Turn Your House Into Cash • Pay Oﬀ Existing Mortgage Or Credit Card Debt • Fund Home Improvements • Buy A New Car Or Have The Holiday Of A Lifetime • Keep Ownership Of Your Home Not all properties are suitable for equity release. As part of the advice process other methods of raising money will be explored
CONTACT US TODAY
01233 220 267 / 07789 885 611 email@example.com
Equity Release; this is a lifetime mortgage or home reversion plan. Think carefully before securing other debts against your home. Life time mortgages are repaid on death, or if the homeowner moves out. The amount of money that can be released is limited by age, health, value of your property and the lender. Any equity release will reduce the amount of inheritance that can be left.
THE POWER OF
CONFIDENCE We look at the body positive movement and the importance of feeling confident
didn't really have any disabled role models when I was younger, I can remember reading magazines and watching television and never really seeing anyone in a wheelchair modelling clothes or presenting and feeling very down about it,” says Sophie Bradbury-Cox, who has spinal muscular atrophy type three, is a wheelchair user and absolutely loves colour. She posts images of herself in bright colours, stripes and polka dots, out and about in Northampton on Instagram and is hoping to get into the fashion industry. “There are more disabled people who are appearing within media on television, for example. It’s a different matter when it comes to the fashion world as disabled models on catwalks or in advertising campaigns are very rare,” she says. Disability is drastically underrepresented in all aspects of the media. The importance of representation cannot be understated – when you don’t see anyone who looks like you, you can feel isolated and out of place. “Disability is not reflected in the media to anywhere near the degree that it
exists in society, but because of some concerted efforts there are a few brands who are starting to explore that side of diversity through their advertising,” says Danni Gordon, a body positive advocate at The Chachi Power Project (www.chachipowerproject.co.uk). With brands like River Island and Tommy Hilfiger creating adaptive clothing and producing high profile campaigns, the lack of diversity is set to change, especially when businesses realise the power of the purple pound. But the media landscape has changed with the advent of social media, in good ways and bad. Social media is one of the main culprits when it comes to a lack of body confidence, especially in young people. When you idly scroll through your iPhone, you consume approximately 60,000 images a day.
Disabled models on catwalks or in advertising campaigns are very rare www.enablemagazine.co.uk
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While it’s impossible to remember every single thing you saw, the message seeps into your brain that there is a certain way to look: we’re bombarded with images of ‘perfection’ that are unattainable. It’s important not to fall down a rabbit hole of imagery which makes you feel bad about yourself, and instead seek out media that encourages, enables and inspires. “My tip would be to curate all the media that you are able to. You need to be in control of how you feed your eyes and your mind,” says Danni. Don’t endlessly look at pictures of fashion models, instead check out #bodypositivity on Instagram and look at a diverse range of bodies. “Immerse yourself in a body positive world. I’ve retrained my brain to normalise different bodies of all shapes and sizes and abilities by altering what my eyes see every day,” she says. Small steps to change your mindset can have a big impact. Danni advocates making a choice to stop being so judgemental as the biggest change. It can be hard to change the way you think, but when you do, it changes everything.
Social media is a game changer when it comes to representation: it’s a great leveller, and gives a platform to people who otherwise may have gone unheard. “I think Instagram is a fantastic platform for people with a huge array of body types and disabilities to create their own space to show who they are and to inspire others,” says Sophie. “I think it's so important that body diversity is recognised within the media because no one is the same and that's what makes us unique.” Sophie’s presence on social media isn’t just about showcasing her favourite outfits. Her thoughtfully curated Instagram presence shows a full and colourful life of someone who is enjoying herself. “I want to be positive and confident on social media to show other disabled people that it's nothing to be ashamed of and if you love fashion and clothing, then you should be who you want to be and dress how you want to,” she says. Fashion is clearly a big part of
Sophie's life. “My sense of fashion is very important to my identity; I love fashion and I love wearing clothing that makes me feel confident,” she says. “I like to wear a lot of leggings, jeggings and dresses as they are usually the easiest to get on and off.” Fashion can seem like a trivial thing, but wearing clothes that express yourself, that you feel good and comfortable in, can be the start of your confidence journey. Whether you love to wear sharp suits or colourful dresses, fashion can be an inclusive way to showcase your personality.
In a world that judges disabled people at first glance, it’s important to feel proud of your accomplishments – whatever they are – and who you are. Sophie’s attitude is refreshingly positive and as bright as her fashion taste. “I'm proud of my disability because I feel like people do judge wheelchair users, they see someone who they may feel sorry for or pity and I believe that it shouldn't be the case,” she says. No one who has seen Sophie's Instagram feed, however, would ever think that her life was in any way lacking. “I feel like I probably am quite naturally confident because I am really proud of being Follow Sophie disabled and I've never @fashionbellee wanted it to get in the way on Instagram for of anything I've wanted to a pop of colour do,” she says. Unfortunately, negative attitudes towards disabled people are still prevalent in the UK. According to Scope: 32% of disabled people reported that they feel targeted. Shockingly, 67% of nondisabled people feel awkward talking to disabled people. It's a situation that needs to change. “People in wheelchairs or disabled people in general are no less valuable in society than non-disabled people," says Sophie. “I'm proud because of how I come across. I have achieved things I never thought possible when I was younger like driving or owning my own home. I think that's because I've always wanted to have independence and push for a life that may be classed as 'normal'.”
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Face it We speak to Rory McGuire about the campaign he’s spearheading to stop discrimination against people with a disfigurement
lot of people think it’s just young people who make comments, but it’s old people, too,” says Rory, who has a birthmark on his face and has had around 20 operations. He faced a lot of verbal prejudice and mental abuse when he was growing up, and has teamed up with charity Changing Faces to raise awareness and change people’s attitudes towards people who look different.
young. “Two years ago, I decided not to hide myself away any more and I posted on Facebook about what I had gone through. It went viral and I got so much encouragement from all over the world which showed me that people can be supportive,” says Rory. “I also had a major operation that removed about 85% of my birthmark and that helped my confidence, too.”
SURVEY Changing Faces’ report, Looking Different – The Future of Face Equality surveyed over 1,500 children across the UK aged 7-17. Its findings show that children are socialised to discriminate against people who look different. Almost half of young people have stared at a person with a visible difference – or know someone who has. A quarter of young people HATE CRIMES know someone who has pointed or said Many hate crimes go unreported, so something nasty – or have done we don’t know the full extent of this themselves. Only three the problem outside the in ten young people say classroom. Rory and they would like to be Changing Faces want to Only three in ten friends with somebody encourage more people young people say who has a visible to come forward and difference. report hate crimes. they would like There are at least “The police will deal to be friends with 1.3 million children, with it appropriately, somebody who young people and and the person will adults in the UK be able to get help has a visible who have significant and support and not difference disfigurements, which go through the trauma includes 86,000 children of alone,” he says. However, school age who have a visible there is some good news: in difference. general, people are more accepting. “One little thing someone said that “It’s still a very serious issue worldwide,” I found hurtful could put me in a bad says Rory. “People might be becoming mood for the rest of the day,” says more tolerant, but we still have a long way Rory. Insensitive comments, staring, to go.” being left out and bullying are sadly still commonplace in the playground, but it i FIND OUT MORE doesn’t need to be that way. Rory believes Changing Faces (www.changingfaces. that parents should educate their children org.uk) is a charity for everyone who has a that everyone doesn’t look the same. “We mark, scar or condition that makes them look live in a diverse world,” as he points out. different, provides advice and support, and Rory has put aside the negativity and campaigns for a world that respects difference. abuse that he experienced since he was
Rory was born with a birthmark on his upper lip and had 20 surgeries
Last year only 12% of students in higher education had a known disability. Your disability should never hold you back from going to university, and support is out there. We talk to one student about her experience
hloe, who has cerebral palsy, epilepsy, impaired vision and chronic pain, runs her own blog documenting her time at university (www. cpstudentblog.blogspot.co.uk). She has just finished her second year at Leeds Trinity University studying psychology and child development, and is about to enter her third. Chloe encourages disabled students to think about what additional support they need before their term starts. “I arranged meetings with the disability coordinator before I started, otherwise you’re floating round in the first few weeks before your plan is in place,” she says. “There are things you could miss out on in your first week, and you don’t want to be worrying, you want to go out and enjoy freshers’ week.” Every university has a system in place to provide you with the advice and support you need to complete your degree: this can range from having an aid come to classes with you to providing assistive technology. Making lecturers aware of how your disability could affect your learning so reasonable adjustments can be made help put your mind at ease. An aid can help you take notes during lectures or help you study: this service is normally provided by the university’s support department. If you require full-time help, a personal assistant can help you with these tasks along with everyday ones like getting to university and preparing meals. To find out if your local council can provide and fund a PA, or where to find one if they can’t, talk to your social worker. FUNDING Like Chloe, you may be eligible to receive Disabled Students Allowance (DSA), which helps cover the cost of travel and specialised equipment and unlike a
student loan you won’t have to repay it. You are eligible if you’ve applied for student finance, will be studying for at least a year and have a disability that affects your study. This includes learning difficulties, mental health conditions, physical disabilities and long-term health conditions. If you aren’t eligible for DSA, the Student Disability Assistance Fund (www.studenthealthassociation.co.uk) covers the same costs. Grants are also available from organisations including the Snowdon Trust (www.snowdontrust.org). You could also be eligible for Personal Independence Payment as a student with a disability. This can help cover the costs of daily living and getting around, the amount you receive will not be affected by your normal student funding or DSA. ACCESSIBILITY The majority of universities offer accessible or adapted rooms within student accommodation and private halls will provide the same options at no extra cost. It’s important to remember your limits when living with other students. “Living with a group of students is great fun, but if you have a disability, especially if it affects pain levels, it can be hard to step away from the flat,” says Chloe. “That was the most difficult part for me. They can see you’re in pain but that’s ok, that’s going to happen if you live with people and there’s a massive amount of understanding.” Your course and accommodation shouldn’t be the only things you consider when choosing a university: it’s important to take accessibility into account. Choosing a new university based on a campus rather than spread across a city, like Glasgow Caledonian University or Leeds Trinity University, can make it easier to get around.
MAKING FRIENDS Get involved with freshers events and you’ll have a group of close friends before you know it, some universities have induction weeks for those with a disability, allowing you to meet people in a similar situation while finding your way around campus. “Go have fun like everyone else,” says Chloe. “People get so focused on ‘I have a disability’ and I felt like that at first, too, but it’s up to you what experience you want at university whether it’s getting involved in societies, or making friends, or focusing on becoming independent. It’s completely up to you, just like it’s up to everyone else what they make their experience like.” Social media is a great way to connect with people even before you move. Search for course or university groups on Facebook or hashtags on Twitter and Instagram. Even if making friends doesn’t happen instantly, remember the ones you already have are still there. Chloe says: “Social media is amazing for keeping in touch and having that support network. Sometimes university isn’t what you you expect and you don’t make friendly immediately. It’s important to remember that network behind you is still there.”
EMPLOYMENT AND EDUCATION Go have fun like everyone else… It’s completely up to you, just like it’s up to everyone else what they make their experience like
PARENT TIPS Watching your child leave for university can fill you with worry and this is only amplified when the new student has a disability. Colin Skidmore’s son, Matthew, was diagnosed with autism when he was three-years-old and now is a student at York St John University. Colin says: “Don’t stress or worry about it, instead, research the universities that offer the course, online and in person, go to the open
days, ask about the support they offer, any clubs they have available and if they can provide testimonials. I’ve always felt that you need to trust your gut instincts, which you can only do when you see the university in person.” Helpful information for parents is available through Contact (www.contact.org.uk) and the National Network of Parent Carer Forums (www.nnpcf.org.uk).
www.scope.org.uk 0808 800 3333 www.ucas.com 0371 468 0468
Call the Disabled Students Helpline on 0330 995 0414
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EMPLOYMENT AND EDUCATION
A reasonable adjustment is a change that’s put in place by an employer to help disabled people to access and remain in employment. It’s a legal responsibility that applies to all employers regardless of size under the Equality Act 2010. However, what is reasonable varies depending on the circumstances of the employer
isability comes with a financial penalty, and work (if you are able to) gives you independence, selfesteem and a sense of community – as well as the chance to use your talents and skills. According to Scope, disabled people are twice as likely to be unemployed than non-disabled people. There are still many barriers in place which stop disabled people from reaching their potential in the workplace. “The intention behind reasonable adjustments is in effect to level the playing field,” says Anna Fletcher, a director in the employment, labour and equalities team at law firm Gowling WLG, and chair of the firm's disability network. It isn’t, however, a uniform approach. A reasonable adjustment for one employee may not work for another employee as disabilities affect people in different ways. “The challenge is to understand what will help remove the substantial disadvantage that a disabled employee faces and find out what would work to remove that barrier.
Adjustments should then be kept under review as conditions can change as can the adjustments that can be made. It’s important to keep discussions going and to approach those discussions as a two-way dialogue,” says Anna. One concern employers have is expenditure, but many adjustments aren’t costly. “We’re not talking about huge expenses for businesses to make reasonable adjustments,” says Becky Brooks, member engagement manager for Employers Network for Equality and Inclusion, who advises businesses on equality and diversity. “Reasonable adjustments are often very easy to make.”
“The duty arises where something in the workplace such as a policy or a rule or something about the physical features of premises or the absence of an auxiliary aid puts the disabled person at a disadvantage compared to people
who aren't disabled. Adjustments could include installing a ramp, or widening a door, providing a hearing loop or a larger monitor or offering flexible working arrangements or transferring someone's duties,” says Anna. “Assistive technology is brilliant, for example, iPhones from an accessibility point of view are groundbreaking and can support people with a range of disabilities,” says Becky. "When Access to Work came into the office to assess me 14 years ago, it was recommended that I use a larger monitor and work from home one day a week to break up my commute week,” says Anna, who has a macular condition. “It’s really important not to make assumptions” says Anna. “Communication is key,” agrees Becky. Reasonable adjustments don’t start once the position has been filled – they should also be in place in the recruitment process. Becky uses the example of an autistic man
EMPLOYMENT AND EDUCATION
who applied for a website manager job. He couldn’t come to an interview, and when the recruiter suggested she visit him, that was not viable either. Instead, she asked him what the best way forward was – the suggestion was a trial period. “He communicates via email, works from home and no one has ever met him. The manager took the risk and two years later he’s one of the highest performing employees in the company, and has never taken a day off,” says Becky. They picked the best candidate for the job – but if the organisation hadn’t been flexible from the beginning, they wouldn’t have found that out. Reasonable adjustments and employing disabled people doesn’t just suit the employees. Becky cites a fashion store that wasn’t initially keen to employ a wheelchair user. The employee was very knowledgeable about clothes suitable for disabled people – the way the clothes sat, ease of use, accessibility – and customers often used her as a personal shopper. People would call up the store to make sure she would be in when they came to shop – and disabled fashion lovers started to flock there. “When your employees
reflect your client base, your sales increase. The purple pound is powerful,” says Becky.
As with anything in the workplace, there needs to be clear processes and communication in place. “There’s no legal obligation to disclose a disability, but workplaces where there is trust between managers and employees make disclosure more likely. That allows for real engagement,” says Anna. While there’s no legal time frame for putting reasonable adjustments in place, delay is not recommended. It’s up to the employer to create an environment where people are comfortable enough to disclose sensitive information about a disability that they may still be coming to terms with. There are some practices that organisations find useful, including buddying up to someone in HR. “Another interesting concept is using a disability passport,” says Anna. “It states your particular needs and will be transferrable between departments or even employers.” As Anna points out, it can be upsetting to go over your disability and specific needs again and again with
new people. It can be distressing to talk to someone about your disability, although for some that can be cathartic.
While this might seem daunting for employers, there is plenty of support out there. “Don’t think you’re on your own,” advises Becky. “There are organisations out there to help you through this process.” More employers are onboard with the importance of a diverse workforce especially as 87% of disability is acquired rather than people being born with a disability. i
Access to Work www.gov.uk/access-to-work Employers Network for Equality and Inclusion www.enei.org.uk Disability Confident www.disabilityconfident. campaign.gov.uk
BRIDGE TO WORK “There is a strong demand for a more diverse workforce,” says James Lee, project manager of City Bridge Trust’s Bridge to Work, a programme that aims to tackle the disproportionately high level of young disabled Londoners in unemployment. One of the challenges is that while organisations recognise the strengths of diversity, small and medium sized enterprises are often less able than bigger companies to tap into this talent pool. When challenged with the perception that recruiting and providing reasonable adjustments for disabled employees may be more costly, James points out there is evidence to show that reasonable adjustments often cost in the £10s, rather than the £100s. “From my own experience as someone who is a wheelchair user, there can be a lack of understanding about the support companies can both access and provide,” he says. Almost at the end of its first year in operation, Bridge to Work, is set to change the face of employment for young disabled Londoners. For more information on City Bridge Trust, the City of London Corporation’s charitable funder, visit www.citybridgetrust.org.uk/bridge-to-work.
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Thatch Close Cottages date from the 17th century and are set in a quiet secluded location with wonderful views over the rolling hills of South Herefordshire.
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Lee Ridley is a comedian like no other. Under the scrutiny of Simon Cowell (and the general public) Lee, under his stage name Lost Voice Guy, showed that there are no barriers to being funny. He’s brought disability into homes across the UK, one joke at a time
HAVING A LAUGH WITH
ongratulations on winning Britain’s Got Talent! When did you realise comedy was for you? Thanks very much! I don’t think it was ever a realisation, it just sort of evolved over time. I’m a huge fan of the League of Gentlemen, which explains my twisted sense of humour! You rely on a synthetic voice in your routine. What is it like getting your comedic timing down? It’s trial and error. Obviously I can’t stop in the middle of my routine as easily as some comedians can, I have to try to predict when people will laugh then put in extra
PIC: © STEVE ULLATHORNE
LOST VOICE GUY You also have a BBC Radio 4 show, Ability. Where do you get the inspiration? I would like to Ability is about a disabled see more disabled You and fellow guy called Matt with comedians booked constestant Robert cerebral palsy who by comedy clubs, White, who has can’t talk – so obviously Asperger’s, brought it’s totally fictional! He appearing at festivals disability awareness moves out of home for and being shown on to mainstream TV on the first time and lives television Britain’s Got Talent. with his best mate, Jess, How does it feel? and has a slightly dodgy It means a lot that we have carer called Bob. I guess some both raised awareness of disability of the inspiration for the show in general. comes from my own life, but obviously Since doing BGT, I definitely had more of I’ve used artistic licence. For example, I a positive reaction from the general public. have never dealt drugs or gone shoplifting. Whereas they used to stare at me in the Honest! street, now they engage with me and treat me a lot more normally. What are your hopes for the future It was really good to see two people with when it comes to your comedy and disabilities in the final of BGT, but I’d still shining a light on disability? like to see more. I would like to see more If I’m honest, I started doing stand up disabled comedians booked by comedy comedy because I thought it would be a clubs, appearing at festivals and being laugh, and that’s still the reason I do it. I’m shown on television. enjoying the ride, and seeing where it takes Basically, more disabled people being me! portrayed in a positive light. I’m sick of being part of a group in society who are mostly demonised in the media (unless Lee is appearing at the Edinburgh they can win a shiny medal, of course). Fringe and will tour the UK in 2019, That’s exactly why hate crimes against the www.lostvoiceguy.com disabled are on the rise. punctuation to leave more of a gap between the words. It’s an art in itself if I’m honest.
Catch our full interview with Lee on the website, www.enablemagazine.co.uk 82
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MITSUBISHI MOTABILITY OFFERS OUTLANDER DIESEL 3
MIRAGE JURO CVT AUTO
ECLIPSE CROSS 2
Rear view camera
Heated front seats
Climate control air-con
Electric heated front mirrors
Pop in and see us | Visit mitsubishi-cars.co.uk to find your nearest dealer. The Motability Contract Hire Scheme is administered by Motability Operations PLC (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate of the Mobility Component of the Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment which will be taken in lieu of the four weekly rental. Models shown are the Outlander 3 2.2 diesel manual, Mirage Juro CVT petrol automatic, Eclipse Cross 2 1.5 petrol manual and ASX 2 1.6 petrol manual. Terms and Conditions apply. Please ask the dealer for full details. Rentals valid for applications placed between 1st July and 30th September 2018. 1. Please note that Mitsubishi cannot guarantee compatibility with all mobile phones and Bluetooth devices with the handsfree system fitted to this vehicle. Please check with the mobile phone manufacturer for further information on compatibility. Fuel figures shown are official EU test figures, to be used as a guide for comparative purposes and may not reflect real driving results.
Mirage CVT Auto fuel consumption in mpg (ltrs/100km): Urban 57.6 (4.9), Extra Urban 72.4 (3.9), Combined 65.7 (4.3), CO2 emissions 99g/km. ASX 2 fuel consumption in mpg (ltrs/100km): Urban 38.2 (7.4), Extra Urban 57.6 (4.9), Combined 48.7 (5.8), CO2 emissions 135g/km. Eclipse Cross 2 fuel consumption in mpg (ltrs/100km): Urban 34.4 (8.2), Extra Urban 49.6 (5.7), Combined 42.8 (6.6), CO2 emissions 151g/km. Outlander Diesel 3 fuel consumption in mpg (ltrs/100km): Urban 40.9 - 45.6 (6.9 - 6.2), Extra Urban 54.3 - 58.9 (5.2 - 4.8), Combined 48.7 - 53.3 (5.8 - 5.3), CO2 emissions 139g/km - 154g/km.
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