Enable March - April 2018

enable Forget can’t - think can!

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DISABLED PARENTS GOING THE EXTRA MILE

Bionic Woman

March / April 2018

DISCLOSURE IN THE WORKPLACE ATTITUDES ARE CHANGING

WIN AN AMAZON ECHO DOT

Angel Giuffria on Hollywood, diversity, and stepping up

GOLD COAST

COMMONWEALTH GAMES THE MOST INCLUSIVE ONE YET

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27/02/2018 11:18

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23/02/2018 16/02/2018 16:51 12:51

enable Forget can’t - think can!

PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Laura Hamilton laura.hamilton@dcpublishing.co.uk FEATURES WRITER Lorne Gillies lorne.gillies@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Katie Goh Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk PRODUCTION ASSISTANT Lisa McCabe lisa.mccabe@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk Carl Farnworth carl.farnworth@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk

DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007

COVER PRICE £3.00

Welcome Welcome to the spring edition of Enable!

Hello and nice to meet you - I’m the new editor of Enable and I’m thrilled to bring you the latest edition.

As always, we are keen to hear from our readers, so get in touch with your ideas, thoughts or even just to say hi via Twitter @enablemagazine or editor@enablemagazine.co.uk.

This issue is packed - we talk to our cover star, Angel Giuffria, a bionic actress and a congenital amputee, about how she was fitted with the first myoelectric prosthetic at just four months old to what it is like working in Hollywood.

This year is the Gold Coast 2018 Commonwealth Games, as any sports fan will be counting down to with anticipation. We’re doubly excited as it’s set to be the biggest and most inclusive Commonwealth ever. The para-sports have extended so more para-athletes will be attending the games in Oz than ever before.

It’s not all sports and movie stars, though. This issue, we talk a lot about the importance of family. We speak to young carers on page 24 about their experiences and dreams for the future, as well as grown up siblings of disabled people and how it’s changed their outlook over on page 54. We also look at adding to your family through opening your doors to vulnerable people, whether that’s via specialist respite care, on page 58 or the Shared Lives scheme on page 21.

We also have a special resettlement guide in this issue. We talk to vets about their experiences, including Barclay’s hotshot Matt Weston about how he enjoys the surprise on the face of his clients when they realise he’s a triple amputee on page 45. We bring you a wealth of information to help you in the next stage of your life.

Hope you enjoy reading!

EDITOR’S PICKS...

75 EMPLOYER ATTITUDES Disability in the workplace is still a contentious issue. We look at how it’s slowly changing.

63 SCOTSWOMAN OF THE YEAR: SALLY MAGNUSSON We chat to the broadcaster and writer about her charity Playlist for Life and writing a memoir about her mother’s dementia.

44 THE CLIMB RAF vet Garry Morrison tells us about his journey and how it has led him to become a rock-climber.

DON’T MISS… Don’t miss the chance to win an Amazon Echo Dot on p34

Laura Hamilton, Editor

©OTTOBOCK UK

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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©DC Publishing Ltd 2018. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.

www.enablemagazine.co.uk

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27/02/2018 15:07

What’s 37

24

11 interviews THE BIONIC ACTRESS Angel Giuffria talks her film career, media representation, and her bionic arm.

33

ANGIE MALONE MBE We talk to the curling champion ahead of PyeongChang 2018 Paralympic Winter Games.

62

SCOTSWOMAN OF THE YEAR Sally Magnusson tells us about the charity Playlist for Life, which she set up after her mother died of dementia.

71

14

KAIYA STONE ON INVISIBLE DISABILITIES We talk to the performer about discovering she had three disabilities at Oxford University.

24 58

WHAT YOU NEED TO KNOW ABOUT FATIGUE Fatigue isn’t just being tired.

We look at what it is, and speak to someone who has ME.

carers UNSUNG HEROES: YOUNG CARERS As there are over 700,000 young carers in the UK, we speak to some of them about their experiences and how caring affects and enriches their lives.

OPENING THE DOORS TO SPECIALIST RESPITE CARE From special respite care to full time fostering, there are lots of opportunities to help out children and vulnerable people in need.

life MAKE YOUR SMARTPHONE WORK FOR YOU Tech is changing the world for the better. Download these apps asap and change your life.

37

TALKING PROSTHETIC TECHNOLOGY Ottobock has been pioneering the way for the last 95 years.

18

DREAM HOME It’s not just a dream: don’t let your disability put you off applying for that mortgage.

67

THE POWER OF PURPLE How one eight year old started her own day to raise awareness about epilepsy.

4

68

62

PICS: © DEREK PRESCOTT; ONEDITION; OTTOBOCK UK

11

33

enable

resettlement guide Leaving the Armed Forces can be a big adjustment, but there are plenty of organisations and charities who can ease the transition by providing support and guidance.

We speak to two vets about their experiences in the workplace and in the world of sport, and also look at the employers and organisations who are actively recruiting disabled veterans.

www.enablemagazine.co.uk

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27/02/2018 11:42

CONTENTS

16 22 51 54

21

64 29 44

spotlight BIG DEBATE Pre-packaged food is important for the disabled community, but bad for the environment. We find out why the two should work together.

29

KEEPING COOL WITH WHEELAIR We talk to the woman behind WheelAir and her appearance on Dragon’s Den.

family PARENTING WITH A DISABILITY Being a parent can be a challenge at the best of times. We talk to parents who look after their kids and manage their disabilities.

FAMILY AFFAIR Growing up with disability can be challenge – but what if it’s not your disability, but the person closest to you?

care WELCOMED WITH OPEN ARMS Shared Lives is changing the face of care and helping people in care flourish.

motoring THE REVIEW This issue we take the Audi Q2 for a test drive.

sport GOLD COAST The Gold Coast 2018 Commonwealth Games is set to be the most inclusive yet – we talk to three para-athletes.

51 43

THE CLIMB We talk to Garry Morrison about his journey to becoming a para-athlete.

64

voices

BADGE SCHEME Tim Rushby26 BLUE Smith weighs in on the debate.

REALITY An OT tells us 49 VIRTUAL how VR is changing healthcare.

82

profile FINDING YOUR VOICE WITH VOCALID VocaliD is humanising voices.

employment & education FIND YOUR ALLIES There are lots of opportunities out there for ex-Armed Forces if you know where to look.

45

WORKING 9 TO 5 We talk to Matt Weston about how Blesma and Barclays are looking out for veterans.

46

GUIDE TO GETTING BACK TO WORK Returning to civvy street can be tough, but there are companies actively looking for you.

73

APPRENTICESHIPS There are apprenticeships and graduate schemes just for people with disabilities.

75

TIME TO LET DISABILITY WORK Disability is still a tough subject to broach at your place of work.

78

LET’S TALK ABOUT DISCLOSURE Disclosure is still a huge concern for disabled people in the workplace.

www.enablemagazine.co.uk

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27/02/2018 11:32

NEWS

The

LATEST A roundup of the disability news stories making the headlines

60% of disabled people claiming benefits don’t have enough to live on The survey was conducted by the Disability Benefits Consortium, a coalition of more than 80 charities and organisations. The Department for Work and Pensions has said it doesn’t recognise the report, while Labour has called the findings “a damning indictment of the government’s treatment of sick and disabled people.”

Two thirds of the survey’s respondents also described their experience of the benefits system as “bad” or “very bad.”

PIC: © AMIT LENNON / NDCS

A NEW SURVEY BY the national Employment and Support Allowance (ESA) has found that 60% of people claiming long-term sickness and disability benefits believe they don’t receive enough money to live on.

ESA is received by 2.4 million people a week with a minimum payment of £73.10.

Further statistics showed that 62% say they struggle to stay healthy, 49% say they cannot pay their bills, and 32% say they can’t afford to eat.

Classroom support for deaf children in “complete disarray” EDUCATIONAL SUPPORT FOR DEAF children has been found to be in “complete disarray.” The Consortium for Research into Deaf Education reported that specialist teachers for the deaf have been cut by 14% in the past seven years, while there has been a 31% increase in children needing support. Susan Daniels, the chief executive of the National Deaf Children’s Society, warned that without any intervention to change these numbers, the crisis will be far worse in the future. She says: “with 60% of specialist teachers due to retire in the next 10 to 15 years, the government’s current complacency is a complete dereliction of duty.”

6

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26/02/2018 18:01

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23/02/2018 16:49

NEWS

NEARLY HALF OF YOUNG CARERS AGED 5-10 MISSING OUT ON SLEEP NEW STATISTICS BY CARERS TRUST have found that 46% of young carers between the ages of five and 10 are suffering broken sleep to provide caring duties for sick or disabled family members throughout the night. The Trust also found that, according to the most recent Census, 10,000 young carers between five and seven are providing unpaid care in the UK. These figures aren’t so surprising when considering that the number of young carers in the UK has soared by 10,000 in only four years.

For more information, visit www.carers.org

EVERY PIP CLAIM TO BE REVIEWED

A carer crisis is on the horizon for adults with disabilities A SHOCKING NEW REPORT from the charity Sense has found that two thirds of families caring for disabled adults live in fear about what will happen to their loved one when they are no longer able to provide support. Even more worryingly, 75% of family carers say they have no long-term plans for what will happen 8

when they can no longer provide vital care and support, due to ageing or passing on. Sense’s Deputy CEO Richard Kramer is hoping that the report will urge the government “to tackle the pressures facing families with better planning for future care needs and greater investment in social care to combat this looming crisis.”

THE GOVERNMENT HAS ANNOUNCED that they will be reviewing every person receiving Personal Independence Payments (PIP) following a court ruling that found the PIP test unfair to people with mental health conditions. PIP is awarded to people with disabilities and illnesses aged 16-64 to help them cope with the extra costs caused by their condition. PIP has been controversial due to how it is assessed, which is much stricter than the Disability Living Allowance (DLA) which PIP replaced. Nearly 700,000 people currently claim PIP in the UK and the government has estimated that around 220,000 people will receive more money after their case is reassessed. Philip Connolly, Disability Rights UK’s policy manager, has welcomed the review, but expressed regret at PIP’s flawed assessment process: “huge amounts of taxpayers’ money is being wasted on poor quality assessments which deny disabled people benefits that they qualify for.” It’s estimated that the reviewing process will cost £3.7bn and be completed by 2023.

www.enablemagazine.co.uk

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02/03/2018 15:20

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@jiraffe.org.uk 26/02/2018 17:22

INTERVIEW

INSIDE HOLLYWOOD

BIONIC

Outside the film industry bubble the question on everyone’s lips is: why are so many non-disabled actors playing disabled parts? Angel Giuffria may not yet be a household name, but the congenital amputee is changing the way we see prosthetics and disability

A

“

PIC: ©OTTOBOCK UK

s far as I know, I am the youngest person in the world to wear a myoelectric prosthetic – I was only six weeks old. At four months and ten days old, I was trained to use it by having little race cars hooked up to the electrodes.

When I flexed the right muscle, it taught me how to use the arm as a baby,” recalls Angel. Training a newborn without words is no easy task, but for Angel it was just another part of her childhood. Trailblazing the use of prosthetics has been common practice for Angel, so it’s no wonder she refers to herself as a bionic actress – or even a cyborg in some circles.

Angel is certainly one to keep an eye on due to the refreshing – and at times comedic – way she utilises her prosthetic.

Angel’s bebionic is modular so she can choose the aesthetic cover that is right for her on any given day. A customised silver and chrome hand alongside the standard white effect, and several frames allow Angel to change her prosthetic to match her outfit or mood. She has a special flashing prosthetic for appearances, and her Halloween costumes are out of this world. She certainly puts her own touch on how she wears her prosthetic.

As the second person in the world to use Ottobock’s innovative bebionic prosthetic, Angel finally found an arm that works for her.

UNIQUE STYLE “For me, I’ve always loved standing out.

Blending in was never an option for me, it was never something I wanted to do. Prosthetics, a lot of the time, have fleshy colours and are meant to look like someone else’s hand. But, for me, I’ve never had a hand so what hand am I making it look like?” laughs Angel.

Rose gold, a black and white storm trooper arm with blue LED’s, a clear arm that details the internal programming of her prosthetic to a black and red cover – which Angel details reminds her of a 11

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26/02/2018 15:55

INTERVIEW

* ACCORDING TO INDIEWIRE

Sith in Star Wars – her star already shines differently from others.

“A lot of the time people ask me what are the lights for? I tell them it’s for fun: whatever I can do to make this feel more like mine. I remember when I first got [the bebionic], I was the second person ever to have one, and it felt like my hand because I hadn’t seen anyone else with it. Then slowly more and more, people understood: a two-handed person’s hands are unique to them and I wanted my entire arm to be unique to me.”

ACTING Working in the creative industry has always been difficult, especially when you’re trying to make it. Being an actor with a disability can cause struggles, but Angel is stripping away the stereotypes and the preconceptions of disability by showing that having a disability shouldn’t, and won’t stop her from making it big.

Having already starred in successful films including a role in 2016’s The Accountant with Ben Affleck, and even as a District 8 amputee in one of The Hunger Games films – Angel knows how to rock it on screen. But it was Genetic Lottery that was Angel’s biggest moment.

The film was part of The 48 Hour Film Project, and Angel won the award for best actress for her lead role as amputee Bailey Harrison. The seven-minute short follows Bailey as she is selected to trial a revolutionary cure-all drug; despite being content and comfortable with who she is.

Angel says: “It was a really big moment.

The first time I got affirmation for my acting outside of: here’s a part about a girl with one hand.” Winning the award affirmed Angel’s work as an actress but more importantly, her genuine and honest approach to her prosthetic.

“I used to hide my arm. I used to wear a cosmetic device and I would wear it when I was auditioning because I thought people needed to meet and like me first.

Then, they’ll find out I have one arm but they’ll still keep me. The amount of times I fell on my face with that one… I never booked anything when I was hiding it,” explains Angel. Outside of her acting, the youngest person in the world to ever wear a myoelectric prosthetic is finally being her true self.

Despite the ever-growing push for accessibility and recognition that everyone is born different, there is one area, that needs a makeover. “We do have a lot of disability shown in our media but it is not by actual disabled people,” says Angel. “If you look at our commercials, TV shows and films most of the time it is someone pretending and that, as an actor with a disability and an education, is really frustrating. I wonder if they even tried to see someone with a limb difference, or cerebral palsy, or any other disability…

You don’t get to pretend to be other minorities, but for some reason disability is still a minority that we’re dressing up as. That is exactly what it is; you’re playing dress up. Sometimes it is hard to watch.”

In Hollywood’s history 59 non-disabled actors have won an Oscar for portraying disabled characters* – there is still a problem on the big screen portraying disability. There is no doubt that this attitude needs to change and Angel is on the forefront of making it happen. She is set to appear in season two of Amazon’s Goliath, alongside Billy Bob Thornton, and the streaming site has taken steps for inclusivity.

“This is the first production, that I know of, that has cast so many amputees. I know eight amputee actors with principle speaking parts, so I’m really excited to see how they put it together. There is always that fear of are they going to make people feel bad for us, are we going to be victims?

It’s all in the editing,” Angel adds.

Time will tell if Goliath represents disability not as weakness but as strength.

There will come a time where disabled actors won’t worry about hiding an impairment but embrace their differences, and push Hollywood to do the same.

Angel is already leading the way.

REPRESENTATION Everyone at school has been teased or bullied especially the kids that look different, and Angel was no exception.

Now, depiction and acceptance of disability is slowly progressing amongst the youth – as Angel experienced during a talk at her old school.

“In our generation and the upcoming generation, we’re embracing differences so much more. There is a lot of stigma attached to the hook army veterans used to wear and the pylon leg amputees had – people see it and just assume that you aren’t capable. Honestly, maybe that does have something to do with the technology: the devices weren’t there yet to help the person to be as capable as they could be” notes Angel.

You don’t get to pretend to be other minorities, but for some reason disability is still a minority that we’re dressing up as.

www.enablemagazine.co.uk

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PIC: ©OTTOBOCK UK

12

Follow Angel’s journey as a bionic actress over on Twitter @aannggeellll

26/02/2018 15:55

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23/02/2018 16:50

Make your

Smart phone The App Store is chock-a-block: it seems like a hopeful techie launches a new startup everyday with the dream of creating the next Candy Crush or Headspace. It’s hard to know which apps are worth the download when you’re suffering from information overload. When it comes to making our lives much easier, there are several apps out there aiming to level the playing field. Here are our picks of the best apps for disability

work for you

Button

by Neatebox

www.neatebox.com It’s important for everyone to feel independent and that can be difficult when you have mobility or vision concerns.

That is where tech comes in – all you need is the right tool in your pocket when it comes to navigating busy streets and pedestrian crossings. Anyone with a smart phone can download Button, a free and handy app from Neatebox which automatically presses the button at crossings when you approach, so there’s no more struggle to get the green man – and you have more time to cross the road safely. Neatebox also contacts the council on your behalf and asks them to install a Button on the pedestrian crossing(s) of your choosing.

There are currently 28 Buttons across the UK, and Largs has become the first smart town in the UK – a Button has been installed at all its pedestrian crossings.

14

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26/02/2018 10:58

LIFE The Way Back

www.thewaybackvr.com Alzheimer’s is a degenerative disease that causes dementia and can be very distressing and frustrating to experience – but virtual reality (VR) is leading the way in trying to change that by recreating intensely emotional, but positive experiences from the past. The Way Back is a new project that takes cues from reminiscent therapy: it’s a unique VR experience which immerses people with longterm memory loss into a shared past that will evoke and trigger positive memories. It’s a free app for iPhone users (Android is coming soon) that can be used with a Google cardboard that shows photos from events from decades ago – the pilot episode is the Queen’s coronation in 1953. Using details like food and fashion to trigger memories, it gives people with Alzheimer’s, their family, friends and carers something to connect and bond over.

Euan’s Guide

www.euansguide.com Euan MacDonald and his sister Kiki started the guide after he was diagnosed with Motor Neurone Disease in 2003 in an attempt to improve the quality of access information across the UK. Phoning up venues to find out if people with a wide range of disabilities can comfortably go somewhere can be a labour intensive task that might not give you the answers you’re looking for – and it’s discouraging. All the reviews on Euan’s Guide are for people with disabilities (as well as friends and family), by people with disabilities – so it’s authentic and constantly updated. The independent contributors take photographs and document their experiences so you know exactly what you’re getting. Euan’s Guide aims to increase people’s independence and confidence in their mobility, and also making venues more accountable for their accessibility. Listings include information about everything from accessible toilets and wheelchair access, to hearing loops at venues, restaurants, hotels, train stations, and attractions. Most importantly, it’s free to download.

Ottobock Fitness for Amputees www.ottobock.com

When you’re an amputee, working out becomes harder, but no less important.

That’s why Ottobock, a prosthetic and rehabilitation company, has created an app to help out amputees that want to exercise on their own in a safe and engaging way.

The Fitness for Amputees App has a range of fitness and rehabilitation exercises for lower-limb amputees designed to complement physiotherapy and maintain fitness for amputees. The exercises cover strength, endurance, coordination and balance – something that’s really important when learning to stand securely on a prosthetic leg. There’s even a stretch and relax mode so you can cool down after each workout. 20,000 users worldwide have already downloaded it.

www.enablemagazine.co.uk

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26/02/2018 14:18

SPOTLIGHT

Big Debate

Why pre-packaged food is important for the disabled community

O

verpriced peeled oranges and sliced cauliflower in plastic boxes… pre-packaged food has a bad rap. It’s not good for the environment and supermarkets are increasingly under pressure from consumers to ditch it. However, disabled rights activist, Shona Cobb, who has Marfan syndrome, changed the dialogue when she pointed out that many disabled people rely on pre-packaged food and went viral.

HEALTHY FOOD If you have a disability, it’s not always easy to eat healthily. Using a knife to cut up veggies, opening cooking staples like a can of peeled tomatoes or even draining pasta can be a challenge if you have mobility issues. “Accessible food is so important for people like myself who can’t always prepare meals from scratch,” explains Shona. “If I didn’t have access to pre-packed food, then I would have to rely on ready meals, which isn’t that healthy and is also just boring!”

It’s unlikely that supermarkets were targeting disabled people when they started selling pre-packaged food, but it did find a niche market with the disabled community, people who are pressed for time, and anyone who loves courgettini.

Unfortunately, the disadvantage – other than the price – is that the plastic can’t be recycled.

ENVIRONMENTAL CONCERNS Plastic in our oceans, landfills running out of space and unrecyclable takeaway cups – we’re all more conscious of our carbon footprint these days.

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Supermarkets started charging for plastic bags a few years ago, and recently announced they won’t stock them at all. Cutting down on plastic is good for the environment, but Shona argues that disabled people often face the hidden costs of removing plastic and industries don’t take their needs into account when they make big changes. “Restaurants are banning plastic straws, which is great – for the environment,” says Shona. “They’re not providing any alternatives and expecting disabled people to supply their own and pick up the costs. The disabled community and the food industry need to work together to ensure waste reduction rather than keeping our needs secondary.”

Shona argues that the issue around pre-packaged food has been conflated: criticism that it’s “lazy” is ableist, and the real problem is that supermarkets need to use sustainable materials for these,

If I didn’t have access to pre-packed food, then I would have to rely on ready meals, which isn’t that healthy and is also just boring!

and indeed, all their products. “What we need to encourage is more recyclable materials,” urges Shona. “We all have a problem with the plastic waste. Some people said that disabled people’s rights are not above the environment, but it doesn’t need to be accessible food versus the environment – we can have both.”

One way to move forward would be to get rid of single-use plastic and use recyclable packaging – and think of more accessible products for disabled cooks that are both reasonably priced and ethically packaged.

Tweet us your thoughts @EnableMagazine

www.enablemagazine.co.uk

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Avery Hill New Eltham, SE9

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Steplifts

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26/02/2018 12:17

Dream HOME

Home ownership is a dream that a lot of people feel is out of their reach, and that’s only compounded when you or your partner live with disabilities. There’s a lot more to think about than stamp duty and what colour to paint the walls, but don’t rule out owning your own pad just yet

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wning the property you live in isn’t just about flying the nest, escaping grotty flat shares or petty fights with flatmates over bills. Having your own space is about independence, security and comfort – all universal needs. As house prices soar and mortgage payments loom, it feels like getting the keys to your own place is simply a pipe dream, especially when you have to think about accessibility – but it’s not. There are several ways to get that picture of you with your house keys on Facebook.

You can buy a house if your income is entirely made of benefits - just as long as it covers your mortgage repayments

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MORTGAGES

Applying for a mortgage can be nerve-wracking – it’s like taking a test at school. Remember that it all depends on how much you can afford to repay each month and that doesn’t just include your income. You may be surprised that it includes your benefits, too. You can buy a house if your income is entirely made of benefits – just as long as it covers your mortgage repayments. Mortgage lenders are allowed to turn people down if their income is irregular or if they think you don’t

understand the terms of the mortgage – but not because you have a disability: then it’s discrimination. Speak to a few mortgage advisors, banks and building societies to see what your options are.

Remember to be well prepared when you turn up to discuss your mortgage application with the bank or building society. Bring all your documents with you and do your research.

For more information, get in touch with Scope at www.scope.org.uk or 0808 800 3333

www.enablemagazine.co.uk

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27/02/2018 11:24

LIFE

BILLS BILLS BILLS

While being independent can be a dream come true, it also means that you’re responsible for more and that can be daunting. When it’s down to you and only you to pay the bills, it can be off-putting.

However, there is help available for those on a low-income. There are a lot of charities offering local grants or schemes to people struggling to pay for their utilities. The British Energy Trust (www.

SHARED OWNERSHIP You want a house of your own, but you can’t afford a mortgage. Why not consider Shared Ownership? Shared Ownership allows first time buyers to own a share in a property via a housing association. Buyers only need a mortgage on the share they own, so the deposit required for a Shared Ownership home is often much lower than for a typical property purchase and therefore more affordable.

There are some downsides: you have to pay your mortgage and rent on the share of the property you don’t own. Depending on the prices, this could be more affordable than renting and you get to live in the

britishgasenergytrust.org.uk) has an online portal where people can apply for a grant to pay energy bills, Affinity Water (www.affinitywater.co.uk) helps north west London and the home counties pay water bills, and Independence at Home (www.independenceathome.org.uk) offers grants to provide everything from bedding, kitchen equipment, specialist equipment and home adaptations.

house as if you own it. You can also steadily buy more shares in the property until you own it outright.

It’s also a good choice for anyone worried about overpaying for a property. Shared Ownerships prices are strictly regulated by the Royal Institute of Chartered Surveyors (RICS) so you don’t have to worry about paying through the nose for a property.

If you’re interested in finding out more about Shared Ownership, Southern Homes Ownership (www.shosales.co.uk) offers a variety of properties, from sleek city flats, to cosy country houses on a shared ownership basis in London and the south of England.

ADAPTATIONS You’ve spotted your dream house or flat, but it’s not in the perfect condition for you. There are accessibility issues and that costs money.

When it comes to disability, you have to factor in so much more – you might need a ramp or a lift for your wheelchair, to widened doors, or even a stairlift. In England and Wales, you can apply to your local council for a disabled facility grant to adapt your home. In Scotland, the local council and NHS provide some equipment and adaptations on application, and can also provide recycled community equipment. Otherwise, you have to pay for any adaptations from your own pocket and that has to be factored into your overall budget.

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26/02/2018 11:01

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21/02/2018 09:47

26/02/2018 12:18

CARE

SHARED LIVES

Anne Marie and Eileen

Welcomed with open arms Care homes aren’t for everyone – they can be the wrong fit for some people, but they’re not the only option for those who need additional support. Shared Lives Plus is a UK-wide scheme in which an adult or young adult who needs support moves in, or visits an approved carer, and it’s proving hugely successful

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lthough care homes are a lifesaver for some people, they’re no match for the comfort of a real home.

The environment that Shared Lives Plus and its carers provide is more relaxed and friendlier than living in a care home and it reaps the benefits: people feel more settled and valued, as well as having a real sense of belonging. They also make new friends with their new independence, and are able to get involved in activities like clubs or volunteering for the first time.

Half the people using Shared Lives go on

their first ever holiday – something that many of them thought out of reach.

HELPING HANDS Since moving in with her Shared Lives carer Eileen, Anne-Marie has been on two holidays with holiday provider Jolly Holiday and started volunteering in a local charity shop, where she’s made some good friends. “Malta was my favourite holiday. It was my first time flying and I was so anxious, but I loved my holiday and made lots of friends.”

Anne-Marie, who has learning difficulties, gets a lot of emotional support from Eileen, who helps her to manage her weight and her anxiety. “She helps me so I don’t get frustrated or frightened of telling people how I feel,” explains AnneMarie. “She sits me down when I’m upset and takes me through it in manageable stages.”

Shared Lives is for a wide range of people who may be vulnerable, including people with learning disabilities, mental health problems, older people, care leavers, young disabled adults, parents with learning disabilities and their children, and people who misuse substances and offenders. It is being developed as a home from hospital service, an acute mental health service

I wanted it to be more like a family and less like a care home

and respite for family carers. It matches people with carers who suit them and can welcome them into the family home on a short-term or long-term basis.

It works better for the carers, too. Eileen has looked after people in care for almost 30 years and joined Shared Lives Plus from care duties at her local council. “I wanted it to be more like a family and less like a care home,” she explains. “And that’s the opportunity Shared Lives gives us.

It gives people with disabilities who live with us more independence. Shared Lives gives us a lot of support: everyone is very approachable.” says Eileen.

It’s not only hugely beneficial for the people who use it: Shared Lives also costs less than other forms of care. Currently, there are 8,770 Shared Lives carers in the UK who have been recruited, trained and approved by 153 local schemes, and the number is growing every year. This could be the future of care – and it looks welcoming. i

FIND OUT MORE

For more information about Shared Lives Plus and how you can get involved visit www.sharedlivesplus.org.uk.

www.enablemagazine.co.uk

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26/02/2018 11:00

SPOTLIGHT

A big concern of wheelchair users is overheating.

It can be uncomfortable when you’re in a chair for long periods of time – and what about when you’re exercising or a professional athlete? We talk to Corien Staels, the entrepreneur behind WheelAIR, an innovative cooling cushion for wheelchairs, about her recent appearance on Dragon’s Den

STAYING COOL WITH WHEELAIR’S CEO CORIEN STAELS

How long has it taken to get your idea going?

It’s taken three years from conception to product, and after the initial

investment I worked with my team to develop the technology and figure out what’s the best way of creating a cushion that works as a cooler. We had to think carefully about things like airflow.

What was it like being on Dragon’s Den? I’m not a UK national, so I didn’t think I would feel the same amount of pressure as I didn’t grow up watching it, but then I was hit with nerves when I was on TV. They grilled me for three and half hours and I did feel faint at one point – which is the small section they showed on TV, of course! I felt bad for struggling with some of the numbers, but the Dragons chose to invest and offered £75,000.

Why did you choose not to take the money from Dragon’s Den? It felt amazing to have them behind me, but in the end I decided not to go for it because it came with too many strings attached.

Para-athletes Receiving offers from four were hosed down Dragons was beyond my with water... it’s wildest expectations and an so intrusive important moment for the business. That was back in June 2017, and by November, Scottish Edge invested £100,000 in WheelAIR. How does the cushion work?

You detach your wheelchair cushion and fix on WheelAIR and the fan box unit sits at an axis and sucks in air and dispenses it on your back. There’s no heat and no moisture. It cools your core first and then

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PICS: © BBC

H

ow did you come up with the idea for WheelAIR? I was originally a sportswear designer. I didn’t have much exposure to disability, but my father works in the medical textile industry.

When I was studying in Belgium, my dissertation advisor, Lissette, was a wheelchair user. I quickly realised it was an unaddressed issue the more people I spoke to about overheating in wheelchairs so I set up Stael Design. I was completely baffled by it. Para-athletes were hosed down with water, and people were training in ice vests. It’s so intrusive.

The technology wasn’t being utilised.

the whole body. It gives you better posture, as well! The battery is set to last at least 16 hours, and it’s rechargeable – it charges via a USB much like your smart phone. It’s quite sustainable.

What’s next for Stael Design?

We have several other products in the pipeline – all in mobility. Our vision is to build on our expertise in the industry.

WheelAIR is a battery-powered airflow backrest cushion designed with input by Paralympic athletes. It cools back and core temperature, with no noise and is sleek and lightweight.

Cost: £650 www.wheelair.co.uk

www.enablemagazine.co.uk

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26/02/2018 12:19

UNSUNG HEROES

YOUNG CARERS Everyone has different memories of their youth, none more so than young carers. There are 700,000 young carers in the UK that have to juggle growing up and caring for a loved one – this can make life challenging. Two young carers share their journey

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here is a high chance you have met or know a young carer although you might not realise it. It is estimated that there are likely to be young carers in every school and college – that’s about one in 12 pupils at secondary school caring for a parent or sibling.

Cooking for the family, cleaning the house, organising medication or doctor’s appointments, getting others cleaned and dressed for the day – sounds like a job for the parents. For young carers this can be a daily routine, and that doesn’t take into account homework, studying or even socialising with friends. What is it really like to be a young carer?

NORMAL “It doesn’t feel much different when it is you it is happening to, but when you get involved with other things then doing this can make you consider how different you are,” explains 18-year-old Becky Wise, who cares for her mother and sister. “I can’t count the number of hours I’ve put in travelling down to visit my sister and sorting medication, and I don’t feel different or like I’m singled out in anyway.

But, I think, it’s just one of those things that makes you slightly unique.”

Becky realised she had a different family dynamic to most when she was seven, not long after her older sister Lindsay was diagnosed with myalgic

Becky

We have a lot more to do than people realise behind the scenes Becky Wise, young carer encephalomyelitis (ME). Alongside her sister’s condition, Becky cares for her mother, Louise, who has multiple illnesses. Lindsay moving away for university, combined with her dad’s busy work schedule, has meant the primary caring role falls on Becky.

Similarly, Thais cares for her mother, Rosa, with the help of her twin brother Edgar, and younger siblings, Clarinda

Thais and her siblings

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26/02/2018 15:39

CARE

and Kalista. “Caring for mum is normal – maybe I have less sleep – but it’s quite a normal life otherwise,” adds Thais on her caring responsibilities. Thais’ mother is profoundly deaf and a single parent, so 14-year-old Thais and her siblings are Rosa’s ears.

Being a young carer can mean missing out on social events, juggling education, caring responsibilities, as well as explaining to peers their role in the home.

It is a busy schedule to maintain.

UNDERSTANDING Becky is nearing exam season and the balance of caring and revision is becoming more difficult. However, Becky, like many young carers, has a strong support system from her family, Carers Trust and her young carers lead in school.

“If I’m having a pretty tough time of it then I can just arrange to meet with my young carers lead and I’ll talk everything through with her,” explains Becky. “We make a timetable with revision and she’ll usually email my teachers and explain that there are things going on at home so I might not have completed all my work.”

Alongside getting an education and maintaining good grades, keeping up with the busy life of a teenager is something to consider. As a young carer, friends may come to visit and not understand why a family’s dynamic is different or the role of

a carer. “When my friends come around it is quite embarrassing to sign something and they ask me what I’m doing; or having to sign when we are out because everyone stops and looks at us,” says Thais, who learned how to use British Sign Language (BSL) at the age of two.

Despite occasionally struggling to keep up in school or feeling embarrassed around friends, being a young carer provides opportunities that others may not have. Thais has a valuable skill and has even taught her friends how to sign their own names. Becky has also learned valuable lessons. She reveals: “My time management is really good because by doing schoolwork and juggling my caring I have learned to time-manage very well.”

PERSONAL TIME One thing that is clear is the determination and dedication to succeed from Becky, Thais and other young carers.

Becky is hoping to do well in her exams and go to university to study music – as a skilled pianist and guitar player, her dream job would be to tour or sing professionally. Similarly, Thais hopes to be a model and work in the fashion industry.

Just like all young people, Becky and Thais are following their dreams and their personal time is important – not least for giving them a break from caring. Both get

to be teenagers again when Becky goes to her singing lessons and Thais attends Carers Bromley. Thais explains: “It’s a time to relax and it’s a place to get your mind off caring for someone. It’s good to interact with other young carers because you’re on the same level as them, you know what they’re going through.”

Behind closed doors there is a lot of care that the outside world might not know about. Spending time with friends, embracing hobbies or speaking with other young carers can put everything into perspective. Becky says: “We have a lot more to do than people realise behind the scenes. I’m not really sure what the hardest part of being a young carer is – I would probably say it’s different for everyone. What people might assume isn’t necessarily the case.”

There is no denying that young carers are among the unsung heroes in the UK. Giving up their time to care for family members whilst overcoming the challenges of growing up – it is time to celebrate young carers everywhere.

i

FIND OUT MORE

Information on how Carers Trust can support young carers is available by visiting, www.carers.org

www.enablemagazine.co.uk

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26/02/2018 15:40

VOICES

TIM RUSHBY-SMITH

Does the blue badge scheme need change?

There has been an interesting debate emerging around the proposal to widen the criteria Blue Badge entitlement is assessed by, and whether people with ‘nonvisible’ disabilities should be included under the scheme. Author and Enable columnist Tim RushbySmith weighs in with his thoughts

I

’m not sure I can claim to have a strong opinion on whether such a policy change is a ‘good thing’. To my mind, the most important objective of the scheme should be to assess applicants fairly and in a way that considers each individual case on merit.

There have been some innovative initiatives around so-called hidden disabilities over recent months, including special shopping days for people on the autism spectrum and different approaches to job application processes.

PARKING PROBLEMS

Anyone who currently uses a Blue Badge will tell you that there is a chronic shortage of designated parking in many towns and cities. For those of us who use a wheelchair, the problem is often finding a space wide enough to get the chair alongside the car in order to transfer in and out, rather than parking close to the entrance.

Adding more users to the scheme is not going to improve things in this regard, although it’s important to recognise that fewer Blue Badge holders is not the solution to the shortage of parking spaces, any more than amputating a foot is the solution to a lost shoe.

However, the scheme was conceived as

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a way of addressing mobility issues rather than disability discrimination across the board. Enabling someone to access a disabled bay doesn’t automatically reduce the stress of parking, especially as many Blue Badge holders who are not wheelchair users seem to feel duty-bound to park in a disabled bay, even when there are non-disabled parking spaces available that are as close to their destination.

HIDDEN DISABILITIES

The danger is that by drawing a wider range of disabilities into the scheme, the initiative reinforces the idea of disability as being purely physical. This is unlikely to address the hostility directed towards those with a hidden disability by other members of the public - hostility that inevitably stems from ignorance.

If you want to reduce incidents like this,

The only effective solution is to provide decent disability awareness education in schools

improve social experience, and build the confidence of those not currently covered by the parking scheme, then the only effective solution is to provide decent disability awareness education in schools.

This would allow kids to satisfy their curiosities and thus develop a more sophisticated understanding of disability in all its forms. Conscious kids become conscious adults.

Looking Up

by Tim Rushby-Smith is published by Virgin Books

www.enablemagazine.co.uk

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23/02/2018 16:28

Healthcare

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Wheelchair accessible holiday villa in Spain

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Affinity Design established in 2008, is developing accessible holiday villas for disabled people, in particular those with high dependency needs. We are pleased to introduce the first of what we hope will be an extensive portfolio of similar properties.

This project has been designed and developed by a disabled person conscious of the need for quality holiday accommodation with a high level of equipment provision, including electrical ceiling and mobile hoists and a private swimming pool also with a hoist.

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Web: affinitydesign.eu

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23/02/2018 16:54

SPORT

There are 45% more para-athletes and 73% more medals than at the Glasgow Commonwealth Games in 2014

GOLD COAST

Setting a world record for inclusivity Gold Coast Commonwealth Games 2018 (GC2018) is on track to make history – and it’s not just the athletes that are breaking records. GC2018 is going to host the largest integrated Para-Sport program in Commonwealth Games history, setting a new record by hosting up to 300 para-athletes, and 38 medal events across seven sports

P

ara-sport has become increasingly popular in the last few years and has evolved from sport’s little brother to a mega-event in its own right with huge viewing stats – it’s a massive draw for sports fans. It’s unsurprising that two years ago GC2018 announced that its theme was “An Inclusive Commonwealth”. From the offset, the impetus has been on expanding para-sport in the Games.

More events have been added so more para-athletes can attend and new sports will be included, too. It’s the first time a Paratriathalon will be held at the Games (after the success of the first triathalon four years ago) as well as the debut of a wheelchair marathon across the open streets of Australia – encouraging everyone to get involved.

INCLUSIVITY Australian Disability Services Minister Coralee O’Rourke commented that GC2018 was placing a lot of importance on para-sport: “People with disability should be supported to participate in and contribute to all levels of sport, and I am pleased that this has been recognised

in time for Gold Coast 2018. People with a disability can achieve amazing things – such as winning a gold medal at the Commonwealth Games – and this program will give them the opportunity to do just that.”

It’s not just about giving para-athletes a chance to shine: there’s also a big audience for para-sport. Come April, there’s plenty of para-sport events to watch in Oz; Athletics, Swimming, Lawn Bowls, Powerlifting, Track Cycling, Table Tennis and Triathalon. Australia hasn’t just added more sports – it’s also beefed up the games: the Athletics and Swimming programmes are double the size than the previous Games.

Hopefully this is just the starting point of renewed interest in para-sport. City of Gold Coast Mayor Tom Tate says the expanded GC2018 para-sport programme would set the benchmark for future host cities – Australia has set a gold standard that other Commonwealth Games will build on. “A fantastic legacy from our Games would be for other host cities to also adopt an expanded para-sport program,” he notes. “Having more world-class athletes here competing at the pinnacle of their sport is great for our Games and great for the spectators.”

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The Para-Athletes

As it’s the Commonwealth Games, the UK is split into each nation. This means para-athletes, who have been colleagues at other championships where they’ve competed as British, are suddenly pitted against each other.

We talk to three para-athletes about how they are feeling ahead of the games.

Tom Hamer Swimming @tomhamerS14

Tom Hamer has been a full-time member of the British para-swimming team for only three years, but he’s packed a lot in – he’s won two silvers at the Paralympics in 2016, silver at the Commonwealth Games in 2014 and gold at the European Championships. Tom also holds the British record for the 100m Freestyle, the 200m Freestyle and the 200m Individual Medley. At Glasgow 2014 Commonwealth Games, the Rochdale native got silver and this time he’s going for gold while representing Team England.

“It was mixed emotions last time,” he notes.

“I was so close to gold and I hadn’t seen my parents in two weeks. But going up on the podium and getting the medal and touching the edge of the pool knowing I had silver – it was amazing.”

The 19-year-old, who has learning disabilities, has been swimming competitively for a decade, and always wanted to be a professional athlete. “Swimming is my bubble, my second home, my space and my time. I put in the graft; my passion is everything. I want to be the best and make my family proud.”

It’s not just about winning medals though.

He’s also the Ambassador for the UK Sport

Hollie Arnold Javelin

@HollieA2012

The last few years have seen Hollie go from high to high; she beat her own personal record at the 2016 Summer Paralympics to win the gold medal for javelin throwing and was awarded an MBE for her services to sport at the end of 2017. Born without a right forearm, she has the highest ranking for javelin throwing – in the world. While the 23-year-old had a podium finish at the 2008 Summer Paralympics in Beijing and at the 2012 Summer Paralympics in London, it wasn’t until 2016 that she won

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Association, helping to support and inspire the next generation of athletes with disabilities. Tom is heavily involved with his local Scouts group and takes time out from his rigorous training sessions every week to help out. “I love it – they all look up to me and I go every Tuesday. My main goal is to inspire the next generation.”

gold, and this is the first time she will be competing in the Commonwealth Games for Team Wales.

“This is the first time my event has been in the Commonwealth Games,” explains Hollie. “It’s a bonus to be at the Games. My brother lives in Australia, so it’s going to be amazing to have him and my family all together watching me.”

Her training consists of marginal gains, and her hope for the Games is to beat her own personal best – even if it’s only by a fraction. “I’ve won the Paralympics, so there’s a lot of pressure on me, but I put a lot of pressure on myself, too. I don’t ever want to look back at my career and think ‘what if?’”

It’s not all about gruelling training – Hollie also likes to invest in her personal appearance before competing. “I’m such a girlie javelin thrower,” she admits. “I have to get my nails and toenails done and matching, and have my eyebrows done before an event. It’s important to have confidence in yourself – it rebounds in your performance.”

I’m such a girlie javelin thrower, I have to get my nails done before an event

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26/02/2018 17:36

SPORT

What is Commonwealth Day?

PIC: ©JEFF HOLMES

Commonwealth Day is celebrated across the Commonwealth on the second Monday in March every year.

It provides an opportunity to promote understanding on global issues, international co-operation and the work of Commonwealth organisations.

Para-lawn bowls team, Robert, second from left

Bowls is a huge part of my life. I get a huge amount of support from my coaches and my partner Robert Barr, Lawn bowls

Robert Barr Lawn Bowls Champion

The 56-year-old lawn bowls champion started playing over 30 years ago, but had to give it up because of growing problems with his eyesight. “I couldn’t see the jack (the small ball), and had problems setting it. It was embarrassing,” Robert notes. Less than a decade ago, he took up the sport again using a monoscope, specialised equipment which is essentially half a pair of binoculars with a single piece he can turn to focus on the game.

“Bowls is a huge part of my life,” he explains, citing the sociable aspect of lawn bowls as the reason he first started playing. Robert plays four or five times a week, meeting with his club coach once a week and the Team Scotland coaches at the weekend. “I get a huge amount of support from my coaches and my partner,” he says.

This is his first Commonwealth Games, although he went to Australia last year for the qualifying event. “I’m very excited: I want to win the gold medal, but obviously any medal would be great. I play both indoor and outdoor bowls, but I prefer

indoor as it’s faster. But outdoor bowls is going to be faster than normal in Australia due to the grass and the climate,” he notes.

Robert is keen to promote bowls as a sport accessible to anyone. “It doesn’t matter what your age is, or if you have a disability,” he explains. “There’s plenty of equipment for people with disabilities, and bowls clubs even host open days for people with disabilities.”

You can watch the para-athletes compete in the 2018 Gold Coast Commonwealth Games from 4-15 April on the BBC.

www.enablemagazine.co.uk

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PIC: © ONEDITION

INTERVIEW

Q&A WITH

Angie Malone MBE A former full-time mum, Angie Malone didn’t plan on having one of wheelchair curling’s most successful careers. In only 15 years, Angie has represented Great Britain in two Paralympic Games, taking home bronze and silver, and has won gold, silver, and bronze medals from numerous World Curling Championships. In 2017, she received one of the country’s top honours: an MBE in the Queen’s Birthday Honours List for services to wheelchair curling

A

Congratulations! How are you feeling about being selected?

Really excited! This is going to be my fourth Winter Paralympics Games so for me to be selected to go out to PyeongChang in 2018, it’s really the pinnacle of my career. We’ve been working hard all season with a great squad of six players and the five of us that have been selected to go out.

does it feel to be a pioneering athlete of the sport?

I became involved with wheelchair curling in 2003, only a year after the sport started.

I have a spinal injury from a road traffic accident when I was 16. One of my friends who I met in the hospital contacted me, asking me to try out. I was 37 at the time and so busy with my kids, and I said: “Jim, I’m so busy! I’ve got two teenage daughters and I’m at university trying to get my degree!” But he persevered and kept phoning me about it so I went along to the qualifiers at Braehead and was given the opportunity to try out. I was selected to play for Scotland in my first World Championships in 2003 where we won gold. So, for me, it’s been such an amazing curling career.

Wheelchair curling is a relatively new addition to the Winter Games – it was first introduced to the Paralympics in 2006 at the Games in Turin, Italy. How

What are you most excited about for PyeongChang?

It’s going to be great to get out there and just get started and play that first game! I’m

t the PyeongChang 2018 Paralympic Winter Games, Angie represents her country alongside Aileen Neilson MBE, Gregor Ewan, Robert McPherson, and Hugh Nibloe, who together make up the 2018 wheelchair curling team.

We caught up with Angie before the Games to hear about her journey to PyeongChang.

looking forward to the competition starting, meeting all our competitors again. We know most of them now and we’ve made so many friends from many different nations over the years so it’s always really exciting to get out there and make new friends and see old friends again.

How can people get involved with wheelchair curling?

Wheelchair curling is open to all ages so if anybody wants to try wheelchair curling they only need to contact Try Curling (www.trycurling.com) to learn about curling and find out what curling rinks they can visit and try out like I did.

i

MORE INFORMATION

The Paralympic Games will be broadcast on Channel 4 from 9-18 March with daily coverage of the live events.

You can find our full interview with Angie on the Enable website, www.enablemagazine.co.uk

www.enablemagazine.co.uk

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COMPETITION

WIN AN AMAZON ECHO DOT We’re offering an Amazon Echo Dot, a must-have piece of tech, to one lucky reader. Inside the hands-free, voice-controlled circular device is Amazon’s digital assistant Alexa, who is changing the way we live – all you have to do is talk to it

Y

ou can do so much with an Amazon Echo Dot – it can play your favourite music, order takeaway food from Just Eat, voice-control your home, request rides from Uber and get the news. It’s your very own personal assistant. Not only is an Amazon Echo Dot helpful, its sleek and compact design is practical and stylish: it will fit perfectly with every room in your house. You can use it in the kitchen to time cooking, or in the bedroom as an alarm clock, and you can even play music across multiple Echo Dots throughout your house. If you love podcasts, then you can listen to them via your Echo Dot, too.

Having an Amazon Echo feels like you’re in a futuristic sci-fi film – all you have to do is call out: “Alexa, tell me the time” and your wish is its every command.

One of the best things about an Amazon Echo Dot is that it constantly updates itself – it’s connected to the cloud which means that it adds on new skills and features all the time. You can connect it via app to so many services so it can book appointments for you as well as control your house: it’s compatible with lots of smart home systems.

For anyone with accessibility or mobility issues, Amazon Echo Dot gives you more independence and opens up new possibilities. You can connect it to your house (via app), so that you can turn lights on and off, adjust temperatures, and do the food shop, all from the luxury of your favourite armchair. While there previously have been digital assistants on the market, none have been as high-tech or as affordable as Alexa.

There are over 25,000 skills available on Alexa

HOW TO ENTER To be in with a chance of winning, send your name and contact details to competitions@dcpublishing.co.uk quoting Echo Dot. All entries must be received by 30 April. Good luck!

TERMS AND CONDITIONS: All entries must be received by 30 April 2018. Winner is entitled to one Amazon Echo Dot, which will be posted out to the recipient. The prize is non-transferable, non-refundable, there is no cash alternative and cannot be sold to another party. One entry per household. The publisher’s decision is final.

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www.enablemagazine.co.uk

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27/02/2018 10:38

Challenging Disability through Outdoor Adventure The Calvert Trust has been delivering outdoor adventure breaks for adults and children with disabilities in the beautiful surroundings of the Lake District National Park since 1976.

Whether you are looking for new experiences and to meet new people, or just active holiday fun with friends and family, we have something amazing to offer you.

To find out more, including dates and availability, call us on 017687 72255

enquiries@lakedistrict.calvert-trust.org.uk www.calvert-trust.org.uk/lake-district/ introduction Reg Charity No. 270923

CalvertTrustLakes

Accessible canal boat holidays

@CalvertLakes

queen elizabeth’s foundation for disabled people

• Accommodation for eight people including three wheelchair users • Medical bed, wheelchair accessible bathroom and toilet • Powered lifts and ramps and adapted boat controls • Based in Hemel Hempstead • Travel the Grand Union Canal to nature reserves, pubs, cafes, shops and plenty more The QEF Jubilee is specially equipped for people with disabilities and their families, with wheelchair accessible ramps, hydraulic lifts, hoist tracking systems, medical bed, accessible shower and flushing toilet.

Cruise the historic Grand Union Canal through the beautiful countryside of the Chiltern Hills, venture into Camden and Regent’s Park for pubs, shops and restaurants, or enjoy Marsworth reservoirs – a nature reserve with wheelchair accessible paths.

To find out more visit www.VASD.org.uk Call 01372 841100 Email info@vasd.org.uk Registered Charity No 251051

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26/02/2018 12:27

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26/02/2018 12:25

LIFE

TALKING PROSTHETIC TECHNOLOGY People have used prosthetics as far back as Ancient Egypt but thankfully significant advancements have been made since then.

There has been one organisation pioneering innovation in prosthetic technology for over 95 years: Ottobock

F

ounded by namesake prosthesist Otto Bock in 1919, the medical tech company regularly ventures down the road less travelled in prosthetic advancement to ensure users retain their independence. It’s no wonder Ottobock has partnered with the Paralympic Games for over 30 years: its technology is second to none.

Emma Gillespie, head of prosthetics at Ottobock UK, tells Enable about the advancements being made in prosthetic technology and the information people new to prosthetics should know.

MATERIALS Some of the most important changes in the prosthetics industry have come from the types of materials that are being used and the way in which they are used. In the early years of prosthetics, manufacturers made everything out of wood. Now, advanced materials like carbon fibre are much more resilient and adaptable; we use carbon fibre in almost everything.

For example, in running blades we use carbon fibre in the same way as you would see it in the aerospace industry – all the technologies which have gone into storing and nurturing energy are put into our blades to ensure users are propelling forward with as much energy as possible.

The way in which robotics and microprocessors have been incorporated

into prosthetics is another important part of the industry’s evolution. For example, microprocessor controlled knees, like our industry-leading C-Leg, use advanced computer systems to get as close as possible to natural movement.

Before the introduction of the C-Leg, people would be restricted to using mechanical knees which often led to regular falling. On the other hand, the technology in these more advanced prosthetics recovers when the user stumbles, and provides a sense of security and confidence. The most recent and most advanced iteration, the C-Leg 4 is actually available now via NHS funding, which is changing the lives of many above the knee and hip amputees.

THE PERFECT FIT Getting a prosthetic that suits each individual is essential, after all, everybody’s prosthesis will be different.

A prosthetist’s job is to ensure that the patient has all the right components in their prosthetic limb and that they are all aligned correctly so it is comfortable and performs properly. The basis of a prosthetic limb is the socket; this is the first point of contact with the body, therefore it is crucial that the socket is meticulously fitted so that it doesn’t cause irritation to the residual limb.

The suspension system is what keeps

www.enablemagazine.co.uk

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LIFE

CONNECTING For those new to prosthetics, through injury or illness, will discover that their relationship with their team at the limb centre or clinic is really important.

Once the team get to know an individual, their lifestyle and any goals that person may have, then the team working on the prosthetic can help an individual to decide the best products for them. It’s also worth listening to people who have already tried a particular prosthesis to see if it might be right for an individual’s needs.

At Ottobock UK we also work with different charities that bring people who have experienced limb loss together for mentoring and sharing experiences, which we have seen has been really valuable.

Finally, social media is another great way of connecting to others and seeing the way in which a prosthesis performs in the real world.

MAKE IT YOUR OWN Many of our prostheses are designed to reflect a natural limb as much as possible in terms of shape. For example, the Bebionic is the world’s most advanced prosthetic hand and great care has gone into the design so it looks as real as possible, with a rounded shape and profile that gives the hand a natural appearance.

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AS TOLD TO LORNE GILLIES

the socket, and the entire prosthetic limb, attached to the body. Suspension systems come in many different structures: it can be in the form of a harness system, straps, belts or sleeves, and the suction system has also become one of the most popular forms.

Liners are also incredibly important and Ottobock is known for being the only company to offer liners made from three different materials – silicone, polyurethane, and copolymer – all of which have different advantages based on the person’s lifestyle and activity.

Ottobock UK will continue to focus on maximising the potential for natural movement; allowing the individual to wear their prosthesis for longer and ensure their mobility is pushed to its full potential.

The innovative and market-leading products in our current portfolio – such as the Genium X3, the world’s most technologically advanced microprocessor prosthetic leg – prove that constant investment into research and development ensures that every new version of the product builds on the success of its predecessor.

To take it to the next level, people can also purchase a silicone cover. There are companies worldwide that create highdefinition silicone covers that incorporate life-like elements including: pigmentation, hairs, freckles and even intricatelydesigned tattoos.

Like so much with prosthetics, it just depends on the individual, as we also know that many Ottobock product wearers like to show the limb without a cover and embrace the design elements that make the limbs look quite futuristic. i

Many Ottobock product wearers like to show the limb without a cover and embrace the design elements that make the limbs look quite futuristic

FIND OUT MORE

Keep up to date with the latest in prosthetic innovation by visiting, www.ottobock.co.uk or calling 01784 744 900

www.enablemagazine.co.uk

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Door to Door Holidays Door to Door Holidays Limited is a holiday company which specializes in holidays for Adults with a Learning Disability and has been in operation for the 14 years.

Kelvin and his team offer a personal service to all holiday guests from booking to supporting you on your holidays.

We provide fully supported holiday packages in the UK, Europe and Worldwide.

As part of our service we offer Door to Door transport to and from the holiday destination.

Our team are all experienced and well trained and DBS checked but most of all are all fun loving, supportive and professional.

Our holiday guests tell us all that they have fantastic holidays and keep coming back for more.

Visit our website www.doortodoorholidays.co.uk to see our choice of holidays give us a call or drop us an email to book your next holiday with us, kelvin@doortodoorholidays.co.uk, or 07974 730 439

www.doortodoorholidays.co.uk

Quality or Price?

There’s no need to compromise!

The Juvo Powered Wheelchair gives you outstanding quality at an affordable price!

With its modular system combined with front and rear wheel drive options, the Juvo offers great directional stability, even at higher speeds.

The innovative new controller offers its user enhanced comfort and a flexible rotation angle adding to the overall Juvo experience.

Visit www.ottobock.co.uk/Juvo or call 01784 744 900 to find out more.

Affordability meets quality.

#TheBestKeptSecret

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05/02/2018 19:31 27/02/2018 11:05

The holiday you deserve,

ff o % 10 nable for E ers!* read

not just the respite you need

Accessible excursions Live entertainment Wide range of activities 24h on-call nurse-led care Fully accessible facilities Full-board included Financial support available†Enjoy the warm atmosphere and comfort of our three accessible holiday centres: Jubilee Lodge Chigwell, Essex Netley Waterside Southampton Sandpipers Southport

To request a brochure or book your holiday:

Call 0303 303 0145 quoting EN182 Visit revitalise.org.uk Email bookings@revitalise.org.uk *Terms and conditions apply. †Subject to eligibility.

Registered charity number: 295072

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23/02/2018 16:52

enable

Everything you need to know about leaving the Armed Forces and returning to civvy street

FINDING YOUR ALLIES

Reach out to the charities and organisations who provide support

THE CLIMB

RAF vet Gary Morrison tells us about his journey to becoming a para-athlete

WORKING 9 TO 5

Former bomb disposer Matt Weston tells us about how he loves his job in finance

GETTING BACK TO WORK There are lots of companies actively recruiting Armed Forces veterans

www.enablemagazine.co.uk

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We exist to provide a lifetime of support to soldiers, veterans and their immediate families.

We support up to 100 front line charities and specialist organisations – such as SSAFA, Combat Stress, Royal Star & Garter and the NSPCC – to deliver help on our behalf. We also make direct grants to some 5,000 individuals, ranging in age from 6 months to 105 years old.

Through our network of support, our work touches the lives of around 80,000 people worldwide, every year.

Donate or get involved in fundraising at www.soldierscharity.org facebook.com/soldierscharity

instagram.com/soldierscharity

@soldierscharity ABF The Soldiers’ Charity is a registered charity in England and Wales (1146420) and Scotland (039189). Registered Office: Mountbarrow House, 12 Elizabeth Street, London SW1W 9RB, Tel: 020 7901 8900, Email: fundraising@soldierscharity.org

Gary Jamieson, former Scots Guardsman, injured in Afghanistan in 2010, Charity Beneficiary. © Malcolm Cochrane

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23/02/2018 16:42

Find your allies So, you’ve just left the Armed Forces after being medically discharged. Transitioning back into civilian life, moving to a new home, maybe even a different country, and dealing with a life-changing injury or disability is a confusing, scary time. It’s easy to become overwhelmed, but you’re not alone or without allies. We’ve put together a list of support organisations and charities that specialise in helping medically discharged ex-service people so there’s always someone you can reach out to

Blesma

Blesma is the only national Armed Forces charity that specifically looks after limbless veterans for the rest of their lives. The charity’s motto – “Amputation is for life, and therefore Blesma is, too” – sums up their commitment to providing rehabilitation and welfare support to ex-service people who have lost limbs. Blesma’s experienced support officers offer a lot of useful services, including prosthetics advice, arranging activities and events for amputees, as well as regularly awarding grants to help cover the costs of wheelchairs, stair lifts, and home adaptions.

Armed Services Advice Project (ASAP) The Armed Services Advice Project (ASAP) is a branch of the Scottish Citizen’s Advice Bureau and funded by Poppyscotland (www.poppyscotland. org.uk). The organisation gives free, confidential, and impartial information, advice, and support to both current and ex-service men and women.

ASAP offers advice on a range of subjects, such as benefits, housing, money problems, work issues, and relationships. The Project aims to create a supportive and friendly network for the Armed Forces community, and offers face-to-face advice sessions throughout Scotland so you can get to know the person supporting you.

Turn2us

Turn2us is a national charity that helps people in financial hardships gain access to welfare benefits, charitable grants, and support services.

While the charity isn’t exclusively just for veterans, Turn2us does offer specific advice for ex-Forces

and people with disabilities. Turn2us has a “find an advisor” tool that puts people in touch with a local expert who can offer tailored advice and help based on the individual’s situation.

SSAFA, The Armed Forces Charity SSAFA offers lifelong help for veterans and their families from over 250,000 health and social care service providers who give practical, emotional, and financial support. The charity covers a range of complex topics, from housing to debt to mentoring to PTSD and mental health to bereavement. By putting you in touch with experienced advisors in your local area, you can meet them face-to-face rather than grapple with impersonal and isolating phone calls or emails. For anyone adapting to new injuries and disabilities, SSAFA can advise where to seek financial assistance, provide housing support, and give experienced advice on where to obtain mobility scooters, stair lifts, and other solutions to ensure you maintain your independence at home.

i

FIND OUT MORE

Blesma

www.blesma.org

Armed Services Advice Project (ASAP)

www.adviceasap.org.uk

Turn2us

www.turn2us.org.uk

SSAFA, The Armed Forces Charity

www.ssafa.org.uk

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The Climb RAF vet Garry Morrison talks about never giving up, the support he’s been given, and his journey to becoming a para-athlete

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joined the RAF to get away from the Troubles in Northern Ireland when I was 18. I won a lot of medals and commendations and I represented the UK Armed Forces in shooting.

There was a lot of travel, sometimes to good places and sometimes to bad places – I really enjoyed going to the Netherlands.

When I was teaching people how to parachute back in 2003, one person strapped to my back didn’t listen to me: 16 stone landed on my back and broke it.

I spent three months strapped to a bed in London in rehab. I was living in Scotland at the time and just wanted to get home, and I was eventually brought back to Leuchars from Frimley Park Hospital after multiple operations on my back. It took months to learn to crawl, then to walk and build up strength in my back and arms. It took two years to get from walking to jogging and then running.

I passed all my Armed Forces fitness tests again, it was hard work but I basically wanted to prove them wrong. I knew I was going to run, have a job and get on with my life.

POST-MILITARY After I left the RAF, I was working on the oil rigs, but I was made redundant in March. By June, I was blind after contracting chicken pox. My savings didn’t last and it was pretty hard.

Fife Society for the Blind taught me how to navigate with a cane in 2015 and put me in touch with SSAFA, the Armed Forces charity. SSAFA and Blind Veterans UK changed my life. Blind Veterans UK had me rally driving, driving a dune buggy and even a hovercraft: I was smiling for a month after driving the hovercraft. The thing I miss

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the most is being able to drive – just going to buy some bread and milk takes five minutes in a car rather than 40 minutes – it winds you up.

My local MP for the North East of Fife, Steven Gethins, helped me get my house in St Andrews. It’s really quiet here and I love it. SSAFA helped me get the flooring and goods for my kitchen.

Technology plays a massive role in my life: my home speaks to me now. I have apps that tell me what I’m wearing when I’m getting dressed and that read labels in supermarkets.

PARA-ATHLETE I’m up and walking about, and now I’m climbing. I train with the GB Climbing Team and I’m training with Johnny Dawes, the lead British Mountaineering Council coach, with the aim of i

being in the 2020 Summer Paralympics and 2024 Summer Paralympics. My coach Lee Evans is an ex-army commando who has had PTSD – he’s been great. St Andrews University gave me a local athlete scholarship, and I train using Johnny and Lee’s methods in the university’s facilities. Last summer, I went to the European, International and World Championships, and lots of UK competitions, I’ve also represented the Blind Veterans in UK and will represent them in the US this April. It’s been a very steep learning curve.

I’m humbled to be asked to do these things and to travel constantly. I’ve been black blind since last May. It’s been scary, because you have to learn new things, but I’ve started to adapt.

AS TOLD TO LAURA HAMILTON

“

MORE INFORMATION

SSAFA is the oldest national military charity. It provides lifelong support to serving personnel, veterans and their families during their time of need. For more information, visit www.ssafa.org.uk or call 0800 731 4880

www.enablemagazine.co.uk

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26/02/2018 18:17

Working 9 to 5 Matt Weston is a typical city worker: long hours, a good salary and a swanky office at Barclays Bank Canary Wharf, where he spends a huge amount of time on the phone with clients, building up rapport. Matt admits he enjoys the surprise on their faces when they meet him and discover that he’s a triple amputee

M

“

ost of the time, they have no idea. Why would they?” says Matt, 27, a former bomb disposal operator, and the manager of the Barclays Armed Forces Transition Employment Resettlement (AFTER) programme. At AFTER, he focuses on helping ex-Service men and women into the right civilian jobs. “The programme was started in 2010

by Stuart Tootal, a former Paratrooper commander who works at Barclays,” says Matt. “He realised people were struggling to find post-military employment. It wasn’t due to a lack of skills, but lack of opportunity and know-how.

“The AFTER programme provides internships, networking opportunities, mentoring schemes, military talent days, and money skills workshops. More than 5,000 people have been to our CV workshops, and we’ve helped 500 people into work, employing 375 of them directly here at Barclays.”

Work has been key to Matt’s rehab since his injury in 2009. He joined the Royal Engineers aged 16, and joined the bomb disposal squad. “In Afghanistan, it became obvious that IEDs were the key threat to British troops. My unit was the A-Team – we worked with Special Forces and did some really high-risk stuff. We were good at finding bombs – we disposed of more than 100 in four months. I was even given

a commendation for bravery, but in all honesty I felt that I was just doing my job.”

But the very real risks of that job materialised on 29 June 2009. “My memory is still hazy,” Matt recalls. “The Taliban were using IEDs to channel us into certain areas, and soldiers were getting hit in hellish ambushes. All I remember is a flash, my ears ringing, and the sensation of falling.”

Matt lost both his legs and his right arm below the elbow in the blast. He was 20 years old. His recovery has been long, slow and difficult but with the support of Blesma – an Armed Forces charity dedicated to assisting injured serving and ex-Service men and women, he didn’t feel so alone.

“A lot of the ex-military guys I help out are having difficulties of their own, and “Blesma has been brilliant right when they meet me, it makes them think,” from the start,” says Matt. “After my he notes. “I have problems – I only get injury, the support officer I had was my about three hours’ sleep a night because of lifeline. Blesma helps you move back into discomfort, pain and mental issues. But I’m civilian life, and its people are ex-military, succeeding. It makes them think: Man up, I so they understand you. They really helped can do this.” me sort out my compensation – they did all my paperwork for me, and they knew it Matt, who commutes to work from inside out. At the moment, I am working but his home in Tower Hamlets, has found a it’s fantastic to know that the Blesma safety settled career at Barclays. “The building is net is there for me”. For more info, great – it’s the most accessible bank in the contact Blesma on 020 8590 1124 UK. or visit www.blesma.org We have physiotherapy here, and I don’t even have to wear a suit most days, which is great i FIND OUT MORE because they can be If you are interested in learning more about the AFTER programme uncomfortable for us visit www.home.barclays/AFTERprogramme.html or contact a amputees. I’m happy member of the team on AFTERProgramme@barclayscorp.com here.” www.enablemagazine.co.uk

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s

Around 1,000 people are discharged from the Forces each year due to injury. Returning to civilian life is difficult enough for most exservice personnel, but for veterans who have been medically discharged after injury, it can be challenging. There are opportunites there for you, and some employers are actively recruiting veterans with disabilities

A VETERANS GUIDE TO

Getting back to work C

ompanies are being encouraged to develop recruitment programmes aimed at Wounded Injured Sick (WIS) Service Leavers, and many realise how much skill and experience veterans have to offer. We’ve put together a list of some UK-based companies and industries that are leading the way in hiring disabled and medically discharged veterans.

Transport

Transport for London (www.tfl.gov. uk) prides itself on its relationship with the Armed Forces that goes all the way back to WWI. Niall Ahern, employment director at the Reserve Forces’ Association with Greater London, says about this unique relationship between the Forces and TfL: “Public transport in London has a proud history of support for the Forces, dating back to the London bus drivers who ferried troops to the front line in 1914.” In 2016, TfL announced they would offer more than 100 new employment opportunities to exmilitary so keep an eye out.

The Government has estimated that 18,500 ex-service people were medically discharged between 2003-2014 46

TV and Broadcasting

Ever fancied yourself as a television hotshot? The BBC (www.bbc.co.uk/ careers) has launched several recruitment and development schemes for people with disabilities, both behind and in front of the camera. The corporation has a 12-month mentoring programme to train 16 journalists with disabilities, in a range of editorial and broadcasting roles. Half of the trainees will be hired in permanent roles after the end of their year. But it’s not just for

Supermarkets Did you know that Tesco (www. tesco.com) was founded by an exserviceman? Jack Cohen used his demobilisation money from WWI to set up the chain in 1919. Nearly 100 years later, Tesco became the first UK retailer to sign up to the Ministry of Defence’s Military Corporate Covenant, a pledge to support veterans and reservists. The supermarket has set up a new Armed Forces Network to support veterans adjust to life after the military. Every little really does help. i

the budding writers. In 2016, the BBC launched an ongoing scheme for sports presenters with disabilities in a push for better representation onscreen. Former Royal Marine Commando JJ Chalmers joined after he was injured serving in Afghanistan. Before entering the Armed Forces, JJ had wanted to be a sports presenter since he was a kid. “This is me living my absolute dream,” he says. “I could never have imagined I’d be doing what I get to do for a living six years ago.” Who knows, if you’ve got onscreen charisma, you could end up alongside JJ presenting at the Paralympics.

Computing If you’re a computer whiz then look no further. The IT provider FDM (www. fdmgroup.com) prides itself on its recruitment scheme for ex-Forces WIS. The programme trains ex-service personnel to apply their military skills to an IT and business environment. Run by ex-Forces, the scheme ensures that new employees are supported during the transition process through a mentoring programme and network. The scheme has been such a success that it was awarded the gold medal by the Ministry of Defence’s Employer Recognition Scheme.

FIND OUT MORE

Resettlement for Ex-Service Personnel (www.ctp.org.uk) and Hire a Hero (www.hireahero.org.uk) can give guidance and practical information

www.enablemagazine.co.uk

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26/02/2018 11:42

Attention anyone who has served in the Armed Forces...

Blesma is the leading charity for limbless veterans AND those veterans who have lost the use of a limb or limbs.

Many of our Members have lost limbs since leaving military service, but Blesma is also there for all ex-Service men and women who have lost the use of limbs in a traumatic incident after serving.

Our Blesma Support Officers are available to offer advice and answer your questions about mobility or living with the loss of use of limb.

Call: 020 8548 7080 email: membersupport@blesma.org or get in touch via the ‘Contact Us’ page at www.blesma.org

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23/02/2018 16:42

We provide first-class Care for Veterans Residential nursing care, rehabilitation, respite and award-winning end of life care for physically disabled ex-Service personnel and their families Specialist services include physiotherapy, occupational therapy, speech therapy, neuropsychology, and social and recreation activites

For more information, call 01903 213458 Care for Veterans Gifford House, Boundary Road, Worthing, West Sussex, BN11 4LJ www.careforveterans.org.uk Registered Charity No. 1072334

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26/02/2018 17:01

Virtual Reality

VOICES Occupational therapists aim to return patients to their daily lives by helping them regain as much function as possible.

Lead OT at independent specialist neuro-rehabiliation centre, The Royal Buckinghamshire Hospital, Shiva Jamwal looks at the most exciting tool available – virtual reality

I

’m passionate about finding and developing new solutions to support patients to achieve their rehabilitation potential. At The Royal Buckinghamshire Hospital, I research new and innovative technologies to use for both our inpatients and outpatients. We work closely with the tech developers to trial new equipment and to support them in making it as effective as possible.

We see lots of patients at The Royal Buckinghamshire Hospital with significant loss of function in their hands and arms as a result of spinal cord damage or following a brain injury. As medical advances continue to save more and more lives after a brain or spinal cord injury, patients have increasingly complex needs in order to recover and go home, so we have to constantly adapt. We provide specialist rehabilitation and nursing care for people with damaged spinal cord, brain or neurological function, and that includes new and exciting assistive technology to aid recovery.

NEW TECH

Virtual reality (VR) is not just something in sci-fi movies anymore – it’s a rapidly growing technology that when applied as a rehabilitation tool can offer huge potential and possibilities to those with disabilities.

Over the last two years, The Royal Buckinghamshire Hospital has seen promising results from our use of VR. We’ve

found VR both effective and innovative in helping to rehabilitate people with a wide range of neurological conditions. You may be surprised to learn that it’s cost effective, and due to its flexible nature can be used as part of home rehabilitation programmes for outpatients, too. It’s also fun – more traditional rehabilitation approaches can be monotonous – and if people are bored, they won’t participate and then there’s no clinical benefit.

RECOVERY

For patients in pain and experiencing fatigue, VR immerses them in a highly interactive environment, engaging all the

senses, when they enjoy playing exciting games, it feels like they’re not even doing the intense exercise needed to help their rehabilitation. We’ve found that it not only increases their motivation and engagement, but also their participation.

We have a dedicated upper limb lab with manual and technology-based equipment designed to maximise patient participation and improve physical function. Through VR technology, we have been able to effectively combine motor and cognitive training through fun and goal-orientated activities. So far, we’ve had encouraging results in functional recovery in early and later stages of rehabilitation.

What is occupational therapy?

Occupational therapy provides practical support to empower people in their recovery and help them overcome barriers preventing them from doing the activities that matter to them. They complete a science-based degree and are an integral part of the healthcare team in hospitals and in the community. They work with people who have difficulties because of disability, illness, trauma, ageing, as well as a range of long-term conditions.

www.enablemagazine.co.uk

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23/02/2018 16:53

FAMILY

PARENTING WITH A DISABILITY N

obody ever said parenting was going to be a walk in the park, and having a disability can call for different parenting styles. It is estimated that there are around 1.7 million disabled parents in the UK living with sensory or physical disabilities.

Having a disability and choosing to become a parent can be a difficult decision to make.

The usual questions will arise: ‘What will I be like as a parent?’ ‘What will my child achieve in their future?’ Regular worries are tied together with additional concerns for the health of your unborn child. Becoming a parent with a disability can result in extra planning and preparation that other families may not experience.

BECOMING MUM “At first it was a scary concept, we had to make sure that we did plenty of research before even considering getting pregnant,” explains Sarah Hughes who has epilepsy and is hard of hearing (HoH) on a moderate to severe level.

Sarah is also the proud mother of two-year-old Elise.

Before welcoming Elise into the world, Sarah and her husband, who also has epilepsy, attended pre-conception counselling to be educated on potential health risks and

Regardless of how many parenting handbooks you read, nothing can truly prepare someone for parenthood.

There are ups, downs, roundabouts and everything in the middle. Parenting with a disability comes with rewards and challenges

find out more about the relevant medication to take, or not to take, for a healthy pregnancy.

Many people may not realise the additional precautions parents with a disability need to take.

Natalie Riley, mother to Leo, Riley and step-daughter Layla, agrees: “Making the decision to become a parent was easy but the whole process wasn’t. Once we had made the decision to try for a baby I had to speak to my doctor, especially in regards to the medication I was on. I had to stop methotrexate for three months before even attempting to get pregnant… The medication can result in severe birth defects or miscarriage.”

Living with arthritis and diagnosed with Crohn’s disease when Leo and Riley were both under five, Natalie understands the apprehension of getting pregnant whilst taking medication. “One of my main fears during pregnancy was passing something onto Leo and I was very adamant that, should my condition worsen, any child or children of mine would not become my carer,” she explains. Sarah experienced similar thoughts of concern.

“I was afraid of pregnancy and getting pregnant to start with. I didn’t even want to think about the risks. We had discussed

Sarah and Elise

As we both have epilepsy, there was a higher risk of complications Sarah www.enablemagazine.co.uk

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26/02/2018 11:44

FAMILY adoption – something we were very open to,” says Sarah. “As we both have epilepsy, there was a higher risk of complications and abnormalities, such as neuro development issues and major congenital abnormalities,” recalls Sarah.

Becoming a new mum is a rollercoaster at the best of times, not to mention the added concerns Sarah, Natalie, and other disabled parents experience. Thankfully, both have since gone on to have healthy, happy children but the parenting journey truly begins at birth.

PARENTING From pregnancy to hearing the pitterpatter of tiny feet, having a disability can certainly make parenting harder.

Symptoms caused by a disability can change the dynamic of care.

As Sarah and her husband live away from family, there are certain challenges to overcome. “One of my triggers for my epilepsy is lack of sleep – with a newborn it is quite hard to get sleep. We managed to figure it out though. My husband did a lot of the night feeds so that I could rest and get enough sleep for days he was at work,” explains Sarah.

This is why adapting to a parenting style that works for your needs is important.

Sarah and her husband utilised technology at hand by using apps to track feeds and sleeping patters, as memory loss is associated with epilepsy.

Natalie also had to figure out how to be a parent managing her symptoms. “I think one of the hardest symptoms I find to deal with is fatigue, obviously having young children can make this even harder to cope with. Changing my routine has

helped; I will often get the boys to bed then go for my shower and straight to bed myself,” adds Natalie. “I would definitely feel guilty when I wasn’t well enough to go to the park or a play centre with them but I tried to make up for it by being very active at home with lots of fun activities and arts and crafts.”

ACCEPTANCE At the end of the day, when the toys are packed away, the kids are in bed, the house falls silent and you can enjoy that much needed cuppa, all parents are trying their best. Despite additional challenges, parenting with a disability does have positives.

One of the advantages of having disabled parents is that the children will grow up with an increased understanding of disability and be more accepting of others. Natalie says: “I feel that children of disabled parents are often much more empathetic, understanding and nondiscriminatory. From the word go I have encouraged the boys to know about and understand my conditions – they have been amazingly accepting.”

Sarah adds: “I think this will help Elisa to understand disabilities and means she will be more accepting of people who have disabilities.” The more tolerant and understanding young people are towards disability, the stronger the likelihood that this will continue through the generations.

All parents do an amazing job, disabled or not. Being a parent is the hardest, yet most rewarding role ever. More recognition needs to be made for disabled parents to appreciate the extra mile they go for their children.

Natalie and her family

I feel that children of disabled parents are often much more empathetic, understanding and nondiscriminatory Natalie Riley

You can follow Sarah’s parenting journey on her website A Mundane Life www.amundanelife.co.uk

Sarah and Elise

52

Natalie shares her experiences over at The Sponnie Mummy www.thespooniemummy.com

www.enablemagazine.co.uk

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26/02/2018 11:44

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26/02/2018 12:31

FAMILY AFFAIR

GROWING UP WITH A SIBLING’S DISABILITIES The relationship you have with your brothers and sisters can be one of the closest and strongest bonds you have. After all, you share DNA. We take a look at how people can be affected by a close family member’s disability

O

ne in five people in the UK has a disability and there are more than half a million siblings of disabled people according to Sibs, a charity that supports people with disabled siblings.

The relationship you have with your sibling depends on so much: how close you are in age, what you have in common.

You can be the best of friends, or not. When you add disability into the mix, it changes things.

GROWING PAINS Having a brother or sister who has a disability can be challenging, as well as hugely rewarding, especially when you’re growing up. Sometimes parents can overlook their non-disabled children as their time is taken up with their disabled

Ashton Kutcher

54

child. Children with disabled siblings often receive less attention from their parents and may not feel able to speak up.

Many children who have siblings with disabilities feel like they mature faster and have more responsibilities than their friends. They also may be young carers and spend a considerable amount of time looking after their brother or sister.

Stephanie Dale grew up with her younger sister Michelle, who has learning difficulties and autism. “I never felt left out at home, but it was drummed into me that I had to help out, that I didn’t have the freedom that my friends had as I had responsibilities,” says Stephanie. “In some ways I grew up a lot faster than my friends and that took part of the fun of my childhood away. I was always told that I would look after my sister when the time came, which made me somewhat resentful to my family (never my sister as it wasn’t her demanding it).”

Looking after a family member is a challenge that a lot of young people face, and the knowledge that care may fall upon their shoulders in the future can be a worry.

As Stephanie notes, the carer’s benefit of £62.70 a week is hard to live on.

MIXED EMOTIONS Growing up alongside a sibling with a disability means you might have different experiences than your friends. You may realise that sometimes you are treated differently by the world compared to your disabled sibling.

Movie star Ashton Kutcher is famous for

marrying Mila Kunis, starring in That 70s Show and a string of rom-coms – but it’s a little known fact that his twin brother, Michael, has cerebral palsy. While sibling relationships are often fraught with competitiveness and jealousies – as well as deep friendship, love and laughter – when your sibling is disabled, you might feel uneasy you’ve “surpassed” them.

As a famous, multi-millionaire married to an equally successful woman, Ashton felt guilty because, in his eyes, he had overshadowed his brother: “When I got older, I spent years and years feeling bad about it, our inequalities,” he admitted last year.

However, when he spoke to his twin about how he felt, he realised he was feeling guilty needlessly, and that Michael was on his own path and was happy with his life. “He also taught me that he had gifts that I didn’t have,” explained Ashton, who realised he had been patronising.

“Extraordinary gifts that I didn’t have, and that every time I felt sorry for him in life, I made him less. He taught me that and he gave that to me.”

It’s an important lesson to learn, that while Ashton is a non-disabled celebrity

www.enablemagazine.co.uk

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26/02/2018 11:46

FAMILY

and his brother has cerebral palsy and leads a very different life, it doesn’t mean that he should feel sorry for him.

The best bit is seeing her flourish – rather than wrapping her in cotton wool, as most parents tend to, I’ve been pushing her boundaries bit by bit to see what she likes and dislikes

REACHING ADULTHOOD Stephanie, who is now Michelle’s full-time carer, has also seen her sister flourish as she develops. “As I know my sister and her disabilities better than anyone, it’s enabled me to teach her new skills, which the local authority didn’t have the time or budget for,” explains Stephanie, who also runs an animation and video business. “The best bit is seeing her flourish – rather than wrapping her in cotton wool, as most parents tend to, I’ve been pushing her boundaries bit by bit to see what she likes and dislikes. I think it’s easier to do this as a sister than a parent.

Even our family can’t believe the difference and she is enjoying life with her new friends and activities far more.”

Despite their close relationship, there’s no denying that caring can be a challenge.

“Caring has been stressful as I’ve become

a parent overnight to an adult. Things like cutting toenails have sometimes been forgotten as it’s not something you tend to think about. It’s also a strain as we’re constantly in each other’s presence (I moved back home to care for her, so I don’t really have my own space),” says Stephanie. “Due to this, we don’t really have a proper sister relationship. It’s more of a parent-carer role.”

That doesn’t mean caring for your sibling is not without its rewards. As Stephanie points out, being Michelle’s carer as well as her sister means that they’re closer than ever. Stephanie has become her sister’s biggest champion and in the last two years, Michelle has changed beyond recognition and thrived. i

USEFUL RESOURCES

If you have a sibling with disabilities and want to talk to someone, visit www.sibs.org.uk for more info

www.enablemagazine.co.uk

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LIFE

THE

DIARY 26 MARCH-2 APRIL

WORLD AUTISM WEEK

15 MARCH

UK wide www.autism.org.uk World Autism Week is back this spring and there are lots of ways to get involved. The week aims to get people talking about autism and fundraising as much money as possible for The National Autistic Society. The highlight event will be the Night Walk which takes place on 17 March, before the week kicks off. Walks have already been announced in London, Glasgow, Manchester, and Bristol. The entry fee is £20 per person, so make sure you secure a place online asap.

KIDZ TO ADULTZ MIDDLE

Ricoh Arena, Coventry www.kidzexhibitions.co.uk Kidz to Adultz is one of the largest touring exhibitions dedicated to children and young adults with disabilities in the UK. The exhibition is aimed towards young people, their families, carers, and professionals. With over 130 exhibitors offering information on a range of topics, including seating, funding, holidays, education, and accessibility, this isn’t one to miss. The event is free and tickets can be registered through their website or by calling 0161 607 8200.

14-15 APRIL

NATIONAL JUNIOR PARA SWIMMING CHAMPIONS HIPS

2018 Email us The Quays, Southampto n If you have any events www.efds.co.uk coming up in May and Organised by the English Federation June, email us at of Disability Sport in partne diary@enablemagazine.co.uk rship with Swim England, this year’s with the details for National Junior Para Swimming Ch inclusion in next ampionships will be held in Southamp issue’s diary. ton. Participants are between the ages of 10-18 and as long as they meet the outlined crit eria, anyone can enter the Championships. Entry costs range from £12-24 and registration is done online through the EFDS website.

25-26 APRIL

17 APRIL

THE CARE ROADSHOW

Hampden Park Stadium, Glasgow www.careroadshows.co.uk The Care Roadshow is coming to Glasgow! Free regional events pop up all over the UK aiming to inspire and inform care home owners, care providers, and healthcare professionals. There are free workshops and seminars, chances to network in a relaxed environment and discover the latest in innovative products and services. Get up-to-date with changes in the care home industry and be inspired by new products and special offers exclusive to the Roadshow. Tickets are free and can be registered through their website.

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NAIDEX SHOW

The NEC, Birmingham www.naidex.co.uk With over 12,000 visitors each year, Naidex is Europe’s biggest trade, professional, and consumer show focused on the care and independent living of people with disabilities. The mammoth event includes seminars, exhibitions, panel shows, and demonstrations by leading designers, tech companies, and organisations. The show is aimed at both consumers and professionals. Get your free ticket via the Naidex website.

www.enablemagazine.co.uk

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After visiting Naidex is this how you’d like to spend time on your accessible holiday?

You can. If you book an accessible holiday at

MAISON DES LANDES HOTEL in sunny Jersey

Open from May to September Maison des Landes Hotel caters exclusively for guests with disabilities and their families or carers.

RATES per person per day include full board accommodation, daily excursions and tours plus transfers from airport or port and return.

Ask about our ’themed’ holidays - to get the most from your visit!

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Could you support a child with disabilities when their family needs a helping hand?

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26/02/2018 12:35

There is a growing need for respite carers to facilitate breaks for families with a disabled child or young person. From care a few hours at a time to helping out at weekends, this type of specialist, part-time foster care is rewarding, and can help families get the respite they need. One foster carer shares her journey of being a specialist respite carer

OPENING THE DOORS TO

Specialist Respite Care F

ostering is an enriching way to care for children or young people in need of additional support. Finding Homes for Hampshire Children, Hampshire County Council’s Adoption and Fostering Service also has a special scheme called Specialist Respite Care providing respite – a short period of rest – for families of children with disabilities.

SPECIALIST RESPITE CARE There are many ways specialist respite carers can help families. Anyone with experience of caring for someone with a disability, in a professional or personal capacity, is welcome to apply to be a specialist respite carer.

Experience with disability is required for specialist respite carers. Lee Moden, team manager at Finding Homes for Hampshire Children says: “We would need to consider their understanding of disability. A lot of children who need respite care need 24-hour attention, they may need feeding on a regular basis. Obviously, there are a wide range of different care needs for children with disabilities to be taken into consideration.”

Specialist respite carers are supported with costs and receive training so that everyone can experience the full benefits of respite. Care can be given in the specialist respite carer’s home, at the child’s home, or could mean regular weekend visits for several hours or overnight. Specialist respite carers and

58

families can choose the option that best suits their needs.

FAMILY BOND Clare Thomson* has been a foster carer for many years. She and her husband Dan initially became specialist respite carers.

However, their strong relationship with one of the children they cared for, led to a unique development.

Their first-hand personal experience of disability meant becoming respite carers was a decision that felt right. “My husband grew up with an uncle with disabilities and when he was growing up everyone in the family chipped in and helped. I worked at a children’s home and I really enjoyed that job, it was really challenging, and I had thought about being a foster carer one day,” explains Clare. “We thought if we could offer some respite that might be good. We provided respite for seven children before we had Tanya*.”

From the age of eight, Tanya would visit Clare and her family for regular respite visits and a strong bond was formed.

Tanya’s time in the family has been a rewarding experience for everyone involved, all through respite care.

“I now have a lot more patience. I’ve also learned an awful lot about myself, not to take things for granted, and to cherish what you’ve got,” says Clare. “When Tanya used to come to us for specialist respite care, she was a quiet little girl and wouldn’t really interact. She just sat in the

corner and blew a lot of raspberries or she would sit and flick through a book. When Tanya moved in with us full-time, she just flourished and started to interact with us and to play. We stopped some of the more difficult habits she had, and she became more independent.”

Aged 18, Tanya is non-verbal but can communicate with a small amount of Makaton signing and seeing her blossom is just one of the reasons specialist respite care is a rewarding route to take.

After Tanya’s birth family’s circumstances changed, and she was no longer able to live with them, Clare felt strongly that she wanted to step in for Tanya and the family decided to take her on full-time, becoming her foster carers.

www.enablemagazine.co.uk

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26/02/2018 11:47

CARERS

*NAMES HAVE BEEN CHANGED TO PROTECT IDENTITIES

I’ve also learned an awful lot about myself and not to take things for granted and to cherish what you’ve got Clare Thomson, Hampshire Foster Carer

BLOSSOM Over the years that Tanya has been with the family there have been challenging moments but the achievements, no matter how small, have made it all worthwhile.

Clare says: “Her personality has really developed. It is a privilege to watch her grow and develop and it is really humbling as well. You take for granted all the things you can do and it is the little things you get immense amount of pleasure from.”

Their personal journey with Tanya and Finding Homes for Hampshire Children has been hugely gratifying, and Clare would encourage anyone interested in fostering to get involved.

BECOMING A SPECIALIST RESPITE CARER Many children with disabilities have a loving and stable family, but their parents may need additional, part-time support from specialist respite carers, with experience of caring for people who have a disability.

Anyone over 21 with the relevant skills to care for children can apply to start the process, which can take up to six months. During the application process, social workers will provide valuable information, training and guidance.

After all, ensuring the right environment for children and their respite carer is paramount.

Becoming a specialist respite carer can

open the doors to new training, meeting interesting people and getting to provide vital respite for children and their families.

Watching a child develop and progress is an incredible journey and you could be the one to help lead them in the right direction.

i

FIND OUT MORE

Are you ready to support a child by fostering or provide specialist respite care to a family of a child with a disability? Contact Finding Homes for Hampshire Children on 0300 555 1384 or visit www.hants.gov.uk

www.enablemagazine.co.uk

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INNOVATIONS IN ACCESSIBILITY

A NEW INNOVATION IN DISABILITY SCOOTER DESIGN The real beauty of the Electrokart Ranger is the ease with which you can take it apart.

No other buggy folds away to be as neat and compact as the Ranger. It dismantles simply, in no time at all, to fit neatly into the boot of most saloons and all hatchbacks.

This off road mobility scooter is rugged built quality, constructed from high quality steel tubing, phosphated and epoxy coated to give longer life and all weather protection.

Adjustable steering column adjusts for comfort and easy, step-on access, with comfortable steel backed, foam filled and weatherproof bucket style seat as standard. With 2 x braked motors for safety.

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Puts you in the best position RANGER with Lithium battery £2,600 HEAVY DUTY RANGER with a lithium battery £2,995

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Email: sales@vaporricon.com or visit www.vaporricon.co.uk Vapor Ricon Europe Ltd. Falcon Works, Meadow Lane, Loughborough, LE11 1HS

26/02/2018 12:37

LIFE

Product From independent living aids to cutting edge tech, we’ve rounded up the best on the market

WINDOW OPENER

Ridley Electronics Limited, £355 www.ridleyelect.co.uk, 01722 717 878 Ridley Electronics Window Opener works on a range of windows to assist with opening them. To get a breath of fresh air, all you need to do is hold down a button on a transmitter remote until it’s open to your satisfaction, then press and hold it down again to close the window. It’s a quick and easy solution to a big problem. See the Window Opener for yourself at Naidex at Birmingham NEC, 25-26 April.

POWER TRANSFER SEAT

Vapor Ricon, www.vaporricon.co.uk, 01509 635920 The six-way Power Transfer Seat by Faiveley Vapor Ricon will make the transfer from wheelchair to either driver or passenger seat convenient and easy, saving valuable time and ensuring safety as well as enhancing independence for its users. Easy to install, the seat base can be fitted in new vehicles or as a retro-fit product and it can also be pivoted in six different directions.

ACORN STAIRLIFTS

Acorn, price subject to free, non-obligatory survey www.acornstairlifts.co.uk, 0800 016 9741 Staying in your own home gives you a wonderful feeling of independence. Why let getting up and down the stairs stop you from having a fully independent lifestyle? Since 1992, Acorn Stairlifts has been at the forefront of the stairlift industry. An Acorn Stairlift can be fitted to all types of staircase, and can be done so within a matter of days, rather than weeks - even next day if required.

ARDOO PORTABLE HOIST

Ardoo, from £1952 www.ardoohoists.com, 0115 718 0676 The Ardoo portable hoist is ideal for home use, daytrips or holidays. It fits in the car boot and can be taken on an airplane for longer trips. You can relax knowing the Ardoo hoist is compatible with all your needs.

ELECTROKART RANGER

Electrokart, £2,600 www.electrokart.com, 01233 666 000 The Electrokart is a new innovation in disability scootering, designed for the young and the young at heart. The Electrokart Ranger is simple to dismantle and slots neatly into the boot of most cars. It offers you power, performance, and stability for an all terrain ride.

It also comes with a 32AH lithium battery.

www.enablemagazine.co.uk

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26/02/2018 17:46

INTERVIEW

Sally Magnusson

Scotswoman of the year The Evening Times’ Scotswoman of the Year is an award given to celebrate the unique accomplishments of women across Scotland, especially the unsung women who make the world a better place through their achievements, talents and hard work. We speak to 2018’s winner, writer and broadcaster, Sally Magnusson

MUSIC One of the ways Sally connected with her mother towards the end of her life was through music. While she was caring for her, Sally realised the powerful effect music had on her mother’s mood. “You can time your music, which we did with my mother so that if she was frightened in the bath, we would start singing to her to calm her down and let her enjoy it. Music raised her spirits.”

Inspired by music’s effect on her mum, Sally says: “I wanted to tell other families what I’ve been going through – and that there is something they can do to help

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PIC: © DEREK PRESCOTT

A

side from her broadcasting career, Sally’s work as a memoirist and novelist as well as her charitable work caught the eye of the award givers.

Her most famous and moving book, Where Memories Go, is a real-life story about her mother’s dementia. “I wrote about what it’s like for families dealing with dementia and I guessed at what was going on in my mother’s head when she had dementia,” explains Sally.

Family is clearly important for Sally: her new novel The Sealwoman’s Gift was inspired by the tales her father, the beloved broadcaster Magnus Magnusson, told her about his native Iceland. But it was the passing of her mother in 2012 from dementia that moved her to establish the charity Playlist for Life (www.playlistforlife. org.uk).

their loved ones get through life a little more easily and happily. I started talking at conferences and gradually that evolved into a charity because more and more people wanted help. We began developing tools for families and training care home staff about how to offer people music that would make them feel better.”

Sally notes that music can be used as a therapy for a range of conditions, not just dementia. “At the Scotswoman dinner, I was sitting next to a woman who told me that her son has severe autism and when they played him certain music, it not only calmed him down but also made him more engaged. It works with stroke patients and in Accident & Emergency to calm agitation.

I would urge anybody to think about making a playlist for themselves which they can carry with them into whatever life throws at them.” i

Sally’s bestselling book

MORE INFORMATION

Playlist for Life is a music and dementia charity, that uses the music from a person’s life to keep them connected to themselves and their loved ones throughout their dementia journey via apps and playlists.

For more information, visit www.playlistforlife.org.uk

www.enablemagazine.co.uk

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26/02/2018 17:47

PASSING PLACES Dundee Rep Ensemble present

By Stephen Greenhorn Directed by Andrew Panton

BSLI - Sat 5 May, 2.30pm Audio Described - Sat 5 May, 2.30pm Dundee Rep 17 Apr - 5 May Box Office: 01382 223530 dundeerep.co.uk

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26/02/2018 12:54

The review

AUDI Audi has distilled all that’s best about its SUV models into the pint-sized Q2, but Alisdair Suttie discovers there’s nothing small about this car’s quality

Inside

Anyone who has sat in a recent Audi model will feel instantly at home in the Q2. It’s easy to step into thanks to the raised position common to crossovers and SUVs, and there’s plenty of adjustment in the driver’s chair and steering wheel. You also get plenty of support from the seat, but lumbar adjustment is not standard on the lower order models.

The dash is neat, uncluttered and made from Audi’s typically solid-feeling materials. Some might feel there’s not

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enough difference between this and an A3’s interior, but that’s a positive in my book as it all works so intuitively. It includes the infotainment system with its dash-mounted display and simple rotary controller to scroll between menus and functions.

Space in the rear seats is best reserved for children, as adults will find their knees too close to the front seats and heads too near the ceiling. Still, the boot is a decent size and the rear seats tip quickly for added capacity.

Driving There’s a choice of 1.0, 1.4 and 2.0-litre turbo petrol engines in the Q2, and the latter of these comes with all-wheel drive as standard. While this version offers rapid performance and four-wheel drive, I’d take the 150hp 1.4-litre as the better all-rounder when it comes to balancing fuel economy, emissions and performance. It’s happy in town or on the motorway, remaining quiet and smooth even when being pushed hard on hills.

If you cover bigger miles, there’s a decision to be made between the 1.6- and 2.0-litre turbodiesels. Again, the larger capacity engine has all-wheel drive as standard and offers sure-footed traction.

However, I’d opt for the lower running costs and admirable refinement of the 1.6-litre diesel. Picking between the light six-speed manual gearbox or slick DSG auto is down to personal taste, and there’s little between for fuel economy.

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23/02/2018 16:36

MOTORS

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.

It’s happy in town or on the motorway, remaining quiet and smooth even when being pushed hard on hills.

Equipment There are three trim levels to choose from with the Q2, starting with the SE that’s the cheapest way into this Audi SUV. On the outside, you get 16-inch alloy wheels and LED daytime running lights, while inside there’s a height adjustable driver’s seat, air conditioning and infotainment that includes a DAB digital radio.

In my view, the Sport model is a better bet as it comes with 17-inch alloy wheels for a smarter exterior appearance. This trim also gains contrasting paint on the rear window pillars to give it some off-

Summary road style. Step into the Sport and you’ll find it has satellite navigation as part of its make-up, along with automatic wipers and headlights to lessen the driver’s burden.

Last up is the all-singing S-line which has LED headlights to better illuminate the road at night. You also enjoy 18-inch alloy wheels for their looks, if not ride comfort, while part-leather adds to the sense of luxury inside the Q2. To cap it all off, there’s ambient lighting that you can adjust to suit your tastes and mood.

The Audi Q2 scores a direct hit when it comes to classy small SUVs. It has the look and feel of this breed yet drives with real balance and flair.

Motability Customers The Audi Q2 is available through the Motability Scheme. Find out more about the Scheme at www.motability.co.uk, or call 0300 456 4566.

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23/02/2018 16:36

y a d e l p pur h c r a m 6 2 y a mond

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The helpline gives people the support they need to live better with epilepsy. But right now we can only answer half of the calls made to the helpline.

On Purple Day, your donations will help us to answer the call that could lead to a life free from seizures.

Order your Purple Day pack, or Purple Day wristband today at epilepsy.org.uk/purple or phone 0113 210 8851

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26/02/2018 12:39

LIFE

The

Power of Purple On Monday 26 March, people across the world will celebrate Purple Day, an annual event dedicated to epilepsy awareness. This year, Epilepsy Action and volunteers continue to fundraise and spread knowledge of the neurological condition

I

n 2008 Cassidy Megan from Halifax, Canada felt like she was the only person living with epilepsy. At age seven, Cassidy was diagnosed with complex partial epilepsy, changing her life forever.

She realised many people did not understand epilepsy in part because it was an invisible illness which encouraged her to create a day dedicated to epilepsy awareness. Today, 26 March is circled in purple on calendars world-wide for Purple Day. AWARENESS In the UK, 600,000 people have epilepsy – that’s one in 100 people. Despite the number of people that have the neurological condition, which causes seizures, more understanding of epilepsy is urgently needed.

Rachael King is mother to Jenson, William and Darcie – all three of her children have epilepsy. “Purple Day is very important because it gives me the chance to fundraise and raise money for epilepsy organisations and hospitals. It is also a huge chance to be able to spread awareness because it is a worldwide event,” explains Rachael.

Rachael is fundraising for three charities that have given her support and advice: Epilepsy Action, North West Ambulance Service and Leighton Hospital Children’s Ward.

Organising a raffle and 14-mile walk, Rachael hopes to increase awareness of the condition. She says: “It’s not just about raising money for epilepsy but promoting awareness of epilepsy and making sure people know what to do when they see

someone having a seizure.”

There are over 40 types of seizures, but tonic-clonic seizures – where the body convulses – are the most well known form of epilepsy. Purple Day aims to spread awareness and knowledge to those who are affected with epilepsy as well as those who don’t know much about the condition.

HELPLINE Purple Day is not only a time to raise awareness of the different types of epilepsy, it is also to help vital organisations fundraise.

Epilepsy Action works to promote improved epilepsy healthcare alongside wider awareness and understanding. The charity helps people like Rachael and her children to get support and advice, as well as ensuring everyone living with epilepsy gets the respect and acceptance they deserve.

Purple Day will see fundraising For more info on help the Epilepsy Action Helpline Purple Day or the – at present the helpline is only Epilepsy Action equipped to answer half their Helpline visit, calls. More people are looking www.epilepsy. for assistance and support: org.uk Epilepsy Action Helpline’s calls increased by 6% last year.

Blossoming from an idea to a world wide event, Purple Day is about support, education and fundraising for charities.

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FIND OUT MORE

You can follow Rachael’s progress or get involved with the walk by visiting, www.facebook.com/3littleepilepsywarriors

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26/02/2018 17:48

WHAT YOU NEED TO KNOW ABOUT

Fatigue There are a lot of misconceptions when it comes to fatigue – it’s much more debilitating than simply being tired. It’s the main symptom of myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS) which affects 250,000 adults and children in the UK, and is the biggest cause behind longterm absences at school. We look at the facts about fatigue

What is fatigue?

It’s not just being tired: it’s a clinically diagnosed symptom of ME/CFS. Its severity can fluctuate over time, and fatigue is a persistent complaint that can’t be explained by other illnesses. One of the most frustrating aspects is post-exertional malaise, which means that even after a rest-period, your body cannot recover its energy levels.

What causes fatigue?

There are several things that cause fatigue, including heart problems, infection, metabolic issues, cancer, depression and obesity. It’s not yet known what causes ME/CFS, however, and more research needs to be done in this area.

What is ME/CFS? Myalgic encephalomyelitis or chronic fatigue syndrome is a persistent, fluctuating neurological condition that affects the nervous and immune system. Symptoms range from severe fatigue, a sore throat, raised lymph nodes and joint pain which has led some scientists to suggest it’s connected to viral infections.

What can you do if you are diagnosed with fatigue?

Fatigue is diagnosed after four months in an adult, and after three months in a child. There is some evidence that Cognitive Behavioural Therapy can help with mild fatigue, but it’s been heavily disputed. Rest periods of 30 minutes rather than prolonged inactivity, good sleep hygiene, pacing, as well as balancing activity and rest can help some people manage their symptoms, but so far there isn’t a cure for ME/CFS.

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ME is a chronic, fluctuating neurological condition... So far, there isn’t a single cure for ME/CFS

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26/02/2018 17:49

LIFE

THE DOWNLOW We caught up with 22-year-old Lizzie, who was diagnosed in 2014 after two years of tests, about what it’s like to have ME How did you feel when you were diagnosed?

There’s no way of testing for ME, so it’s a process of elimination and the doctors had to rule out diseases I’d never even heard of. There was a gap of two years between being ill and being diagnosed.

When I was finally diagnosed at 16, I was relieved to know what was wrong, but I wished it had been an illness with a cure.

ME is a chronic illness where you have to find your own way, and what helps you.

What’s the hardest thing about having ME? It has such an impact on my daily life.

I can’t have a normal life – university, college and daytrips are too tiring. I’m not able to fulfil my potential.

What are your plans for the future?

I’ve applied to study psychology and neuroscience at university, but I have to factor in that I have a chronic illness.

Going to university is hard enough without having to think about whether I’m going to be well enough to go to classes and live by myself. Before I was diagnosed, I didn’t know much about mental health problems and my desire to study it has definitely come from my diagnosis. I want to investigate the neuroscience behind the illness and use my understanding of it. There’s no understanding like experience.

How do you cope on a day-to-day level?

I was house bound for two years and bed bound for about nine months: I literally couldn’t get out of bed if I wasn’t being carried. Osteopathy worked for me, it got

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me out of bed but of course, it doesn’t work for everyone.

The main thing about ME is that it’s not one-size fits all. You have to find out what works for you. Self-care is important, too, and taking care of my mental health and practicing mindfulness. Having a low energy hobby like reading helps, or even painting my nails.

What does fatigue feel like?

It’s so much more than just tiredness!

It’s an all-consuming exhaustion that paralyses you. You can’t think straight, it clouds your brain and it feels like it’s crushing you. And it varies – one day you’re shopping with your friends, and the next you can’t walk up stairs.

What advice do you have for friends and family of people with ME? Just be there for them – you can’t rescue them. Even though you can’t see it, it doesn’t mean it’s not there. And don’t question them about it: you beat yourself up enough just for having it. You don’t even have to understand it, just accept it – it’s a chronic illness.

Having a low energy hobby like reading helps, or even painting my nails

FIND OUT MORE

Action for ME offers information and support for children, families and adults with ME, aiming to reduce isolation and supporting them to make informed decisions about managing the impact of the condition at www.actionforme.org.uk

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26/02/2018 17:50

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26/02/2018 17:04

INTERVIEW

KAIYA STONE ON

DISABILITIES Theatre and filmmaker Kaiya Stone was in her second year at Oxford University when she was diagnosed with dyslexia, dyspraxia and ADHD. It was a shock: even though she had struggled at school, it had never crossed her mind that she might have a disability

S

tanding on stage, Kaiya is confident and funny talking about her own learning difficulties. Like anyone with an invisible disability, it may not be immediately obvious. As Kaiya points out, people can have misconceptions about what disability is and no one knows what your experience is – until you share it.

Her diagnosis was an emotional revelation: “People are surprised when I explain that discovering that I had learning difficulties was more pivotal than being gay,” explains Kaiya. “At 19, you think you know who you are.”

One in ten people have some form of dyslexia according to the NHS – but it’s still a learning difficulty that can go undiagnosed until adulthood.

Kaiya returned to school to talk to her teachers. “One of my teachers made a throwaway comment about how they suspected I might be dyslexic, but because I was doing relatively well they hadn’t pursued it,” she explains. “Imagine what I might have done if I had been given help. The awareness of knowing I have learning difficulties has been so important to me. I love reading, but the words always moved about the page and I thought that was normal.”

The realisation that not all people experience the world the same way was a big one for Kaiya, and she credits coming to terms with her learning difficulties with teaching herself how to deal with failure, as well as success. While she struggled academically, she’s proud of graduating from Oxford with a Classics degree.

Kaiya was approached last year by Canvas UK, an arts organisation which

aims to make art more accessible to everyone, about a project she is doing with her dad called Everything Is Going To Be KO. “My show is stand-up storytelling, a run through of my own experiences – a way to visually explore an invisible disability,” she says. “I want to be able to talk about disability in an accessible, fun and honest way. There’s such joy in communicating.

My story is a tiny drop in the ocean, but sharing and listening – and starting a dialogue – is how we form a community,” she says. People with learning difficulties open up after her show and tell her their

I still spell my name wrong sometimes own experiences.

Going to a prestigious university, and being articulate and successful means that occasionally people ask her why her learning difficulties are a big deal. It’s not just about functioning, it’s about flourishing, and Kaiya points that out: “I still spell my own name wrong sometimes.”

When we talk about disability, it often has negative connotations. “We need to turn that on its head and improve people’s confidence,” enthuses Kaiya.

“Sometimes there’s a backlash to positive discrimination as it’s seen like you’re getting a leg up if you get extra time in an exam, for example. It’s about levelling the playing field which benefits everyone.”

Canvas

Canvas is a Council-funded initiative that brings organisations together across England to increase accessibility and engagement with art. It publishes, curates and promotes video across social media with the aim of inspiring young people.

Twitter: @CanvasArtsUK Facebook: @CanvasArtsOnline YouTube: @Canvas

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FIND OUT MORE

Visit Kaiya Stone’s website for more info www.everythingko.com

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26/02/2018 11:59

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26/02/2018 16:54

EMPLOYMENT AND EDUCATION

Breaking into the workplace It can be intimidating not knowing how to get into a career – where do you start? Apprenticeships and graduate schemes can be helpful stepping stones to get you into the workplace. Here’s a roundup of schemes that aim to make work more accessible for people with disabilities

APPRENTICESHIPS An apprenticeship is a job, but one aimed towards people breaking into an industry with no previous experience.

They usually last 1-4 years and there’s a focus on personal training and developing skills. Best of all, you earn a salary and get qualifications so afterwards you can progress in your career or go to university.

To search for an apprenticeship, go to www.gov.uk, where they list government approved apprenticeships in different fields and different levels. To apply, you’ll be asked to create an account where you will

have the option of disclosing a disability or illness.

If you’re worried about your disability standing in the way between you and your dream CHANGE100 apprenticeship or graduate If you’re nearing the end of scheme, then never fear: of trained apprentices university or just graduated, many are aimed exclusively plan to continue then a graduate scheme at people with disabilities. working with the could be the perfect way Volkswagen (www. same employer* for you to transition from volkswagen-apprentice. student to professional. co.uk) and Channel 4 (www.

Change100 is a programme run careers.channel4.com/4talent/ by charity Leonard Cheshire Disability apprenticeships) have apprenticeships (www.leonardcheshire.org), that works with specifically aimed at young people with different businesses to offer paid summer disabilities. The government is also aiming work placements and mentoring. The to make all workplaces more inclusive scheme is designed to support talented spaces with their Access to Work scheme university students and recent graduates which can provide grants to pay for with any disability or long-term illness to specialist equipment and support costs in gain skills, experience, and confidence the workplace. So, there really is nothing in their chosen career field. Change100 to stop you from getting into the world of works with a range of companies to offer work – good luck. placements in some of the UK’s biggest businesses, like the BBC, Lloyds Bank, i FIND OUT MORE The National Gallery, and Virgin Money.

To be eligible for the Change100 scheme, Disability Rights UK 0330 995 0400 www.disabilityrightsuk.org you need to be either a student in the penultimate or final year of your university Leonard Cheshire Disability 020 3242 0200 degree and be predicted either a 2:1 or first, www.leonardcheshire.org or have graduated within two years.

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*LEONARD CHESHIRE DISABILITY

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ore and more people are choosing to go the route of apprenticeships and graduate schemes after they leave education. The government has set a target of three million new apprenticeships by 2020 so many companies and businesses are developing new recruitment schemes – now is the perfect time to start looking. Although the word “apprenticeship” can conjure up images of blacksmiths and builders, there are actually a wide range of fields offering schemes including healthcare, publishing, farming and hairdressing.

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26/02/2018 15:43

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27/02/2018 10:28

EMPLOYMENT AND EDUCATION

CLOCKING IN

TIME TO LET DISABILITY WORK Job-hunting is never fun, but unfortunately it’s simply one of life’s necessary evils. Levels of unemployment have slowly declined in the UK, but disabled people still face discrimination. As employers continue to swerve hiring disabled employees, Lorne Gillies investigates the impact of employer attitudes

L

iving with a disability – be it physical or sensory – does not make a person work shy. In fact, you could argue, it makes people more determined to prove that they can bring just as much to the table than their non-disabled counterparts. As stereotypes surrounding disability linger, it causes a domino effect on those ready and willing to work.

Recent research commissioned by charity Leonard Cheshire Disability has revealed that one in five UK employers would be less likely to employ an individual if they had a disability. A shocking yet unsurprising figure.

LIFE CHANGING

Unemployment due to disability is something Daniel Biddle has directly experienced. He worked as a project manager in the construction field until a major event put his life and career on a completely different path.

On the morning of 7 July 2005, people across the UK were enduring the commute to work; in London the streets were a commotion of business suits and delayed transport. Four suicide bombers detonated homemade bombs on trains and buses – Daniel was in the thick of it. He’s a 7/7 survivor – and the one with the severest

injuries.

The attack led to Daniel losing his left eye Daniel Biddle and both legs. He had three cardiac arrests, and his spleen was removed. Daniel was in a coma for eight weeks, in intensive care for 12 weeks, and in hospital for a year.

When it came time to return to work, Daniel was welcomed back by his former employer. However, the role was not what Daniel wanted to do anymore and he decided to move on – it was here he began running into difficulties.

“What became apparent was that people were offering me employment because of what had happened to me; because it would generate attention for them. When I decided to leave the last company, it “We’re creating was then very difficult work-ready people, to get a job because the 7/7 notoriety had unfortunately we don't gone – now I’m just have employers that a disabled guy trying are employer ready to get a job,” explains for someone with a Daniel. disability” “What I would tend to find is a lot of online Daniel Biddle applications ask the standard: name, address, DOB and then ask if you’ve got

www.enablemagazine.co.uk

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26/02/2018 17:52

EMPLOYMENT AND EDUCATION a disability. This is before they ask what your experience or qualifications are. By the time I put down the extent of my disability I knew full well they wouldn’t read beyond that.”

Having applied for over 50 jobs, Daniel has experienced first-hand the difficulties of getting into work with a disability. “It’s soul destroying to be honest, because I know my ability to do any job I apply for is impacted because I’ve got a disability,” says Daniel. He has since retrained and set up his own company – not because he wanted to, but because it was the only opportunity available.

MISCONCEPTIONS

Leonard Cheshire Disability’s research revealed that there are still a lot of stereotypes about disabled workers. Line managers involved in the survey were less likely to employ a disabled person because they would be concerned about how efficiently the job would be done.

Neil Heslop, Leonard Cheshire Disability’s CEO, says: “Shocking though they were, sadly we weren’t as surprised as we should have been as the findings chime with what disabled people consistently tell us.” UK figures show unemployment levels at 4.3%, this figure soars to 40% of disabled working age adults.

“I think there may be an inherent fear that’s partly based on the myths around disabled employees; they’re unreliable for instance or they take more sick days.

Many organisations are totally unaware of the government funding that is available to pay for assistive technology and other adjustments,” adds Neil.

Further research from Leonard Cheshire Disability shows that six in ten line managers believe the cost in workplace adjustments are a barrier to employing disabled people – despite Access to Work funding being available. Access to Work provides money for a support worker or to cover the cost of equipment for disabled workers.

EDUCATION

At present, disabled job-seekers can gain skills to return to work through government schemes but are unable to find steady employment. This is because more training is still required for employers to dispel the misapprehensions surrounding disabled workers.

“We’re helping work-ready people, but unfortunately organisations aren’t employer-ready for someone with a disability,” explains Daniel. “At the moment, the view is that disabled people won’t work or can’t work. Nobody is challenging it

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from the other side and asking why aren’t you actively recruiting disabled people?”

Discrimination in employing disabled people is clear – that’s where Leonard Cheshire Disability comes in. The charity recently introduced its Untapped Talent campaign, a call for the government to recognise the untapped potential disabled people bring to the workplace.

Not all organisations have preconceived ideas about hiring a disabled person, and many hirers know that someone with a disability is just as capable, and as talented, as non-disabled workers. “You go into any charity shop and you will see a disabled person normally working in there. Maybe someone with a learning disability or physical disability, they will be working in Oxfam, Age UK – if they can do that then why can’t they be paid to work in Topshop or Burtons? The rumour that you can’t employ someone with a disability is nonsense and that’s proven by a lot of charities who hire disabled people,” adds Daniel.

Disability doesn’t necessarily stop anyone from working. Discrimination and a lack of understanding prevents those keen and eager to work from contributing to society – statistics show it’s a prevalent issue. It’s clear there is still a long road left before employer attitudes match reality.

FIND OUT MORE

For more information on Leonard Cheshire Disability and the Untapped Talent campaign visit, www.leonardcheshire.org or call 020 3242 0200

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26/02/2018 17:52

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23/02/2018 17:00

LET’S TALK ABOUT

DISCLOSURE

Disclosing disability is still a great concern for job-seekers across the UK. As we spend most of our adult life in work or education, concerns about disclosure forces people to hide, or even avoid working. Lorne Gillies investigates the importance of disclosure

P

hysical, sensory, learning disability or mental health issues – everyone has a different ability level, just like how everyone brings something unique to the workforce.

Despite the fact we are all diverse, disclosing disability is still a prevalent issue for job-seekers.

In fact, 48% of disabled people have worried about sharing details about their disability with an employer – an alarmingly high figure. It is finally time to take control and talk disability in the workplace.

DISCLOSURE Lauren Pitt is an open and sociable young woman who has been in her administrational role with the Department of Work and Pensions (DWP) for almost a year. She says: “I always disclose my disability to future employers from the very start because I’ve always wanted them to accept me for who I am. If I take a job, I want them to be aware of the fact that I do have a disability and be supportive and accommodating.”

Registered blind, Lauren lost her sight when she was a teenager after being diagnosed with Leber’s hereditary optic neuropathy (LHON). “It doesn’t worry

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or impairment to your line manager or me that I’m blind: I’m quite outgoing colleagues. and confident but not everybody is like There were some worrying things in that. I find it really sad that some of the research with disabled people telling my friends won’t share their disability us they’ve had to leave their job because purely because they worry they wouldn’t they didn’t know how to tell their get the job; if it is an acquired employer they were struggling, disability they might get fired,” whilst others felt pressure adds Lauren. to hide their condition Unfortunately, disability or impairment from is still one of the defining Every employer colleagues because inequalities in the should be open to they didn’t want workplace that needs the fact that people anybody to know.” to be addressed. To with disabilities There is still a long tackle the fear of should be way to go before disclosing disability, working” disabled people have Scope launched its Let’s full equality in daily life Talk campaign, because and in work. Thankfully, everyone has the right to Let’s Talk is spearheading be their true self at work. the conversation of disability at work to ensure people are no longer LET’S TALK discouraged to ask for assistance or James Taylor, head of policy at Scope, talk openly, if they so wish, about their explains: “Our research found that condition or impairment. nearly half of disabled people have The first step to change is to start a worried about telling employers conversation and Lauren has felt the about their impairment or condition, benefits of this approach. and two in five who requested vital work adjustments said they felt ADJUSTMENTS uncomfortable asking for them in the “If you can share something with your first place. What we really wanted to colleagues and know you’re going shine a light on with Let’s Talk was the to be supported, it’s going to make benefits of disclosing your condition

www.enablemagazine.co.uk

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EMPLOYMENT AND EDUCATION

Lauren Pitt

for a happier and healthy working environment. If you feel you can’t tell someone what’s going on, or why you may be struggling, then I feel it’s a bad time for that organisation,” she says.

“Every employer should be open to the fact that people with disabilities should be working.”

Lauren has been provided the relevant technology within her role to ensure she can complete work to the best of her ability – as everyone strives to.

Being comfortable in the workplace, and feeling able to ask for support or adjustments to execute your job well is crucial.

However, stereotypes still exist for employers hiring disabled people.

Attitudes towards the disabled community in daily life can spread to the workplace causing less confident employees to be concerned when disclosing information.

As James explains: “Perhaps the overarching thing is that the disability employment gap hasn’t changed in ten years. There is still a perception from employers that disabled people are too risky to hire or are going to cost too much. Disabled people tell us that even in 2018 they are still experiencing some negative attitudes at work and I think

that perception of what the work place is going to be like, or how you’re going to be treated as a disabled person, can act as a barrier.”

DISCLOSURE Perceptions can, and will, change – in time. Everyone has the right to work regardless of ability, we each have something to share at work. Disclosing disability can be difficult and may encourage interesting questions, but these questions can start the discussion of disability openly and honestly.

“There are lots of different ways to i

disclose a disability. It’s not always a case of having to stand at the front and make this massive speech. You can send an email out or you can just be really subtle about it, tell one colleague and they might tell someone else,” concludes Lauren.

It is not all doom and gloom in the world of work. More organisations are becoming more accepting and welcoming of sexual orientation and gender identity – disability is sure to follow suit. The first step to acceptance is education and that can start with a simple conversation.

FIND OUT MORE

Scope is on hand to improve workplace discussions about disability.

Visit www.scope.org.uk or call 0808 800 3333

www.enablemagazine.co.uk

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PROFILE

FINDING YOUR VOICE WITH VOCALiD What would you do if your voice was permanently taken from you? Over ten million people live with voicelessness due to illness or degenerative conditions and rely on text-to-speech devices, but they all speak with the exact same voice.

VocaliD is here to change that by humanizing the voice inside speaking devices

Y

oung or old, male or female, Irish or English, bold or timid, our voice represents who we are as individuals.

However, despite our differences there is one thing that unites those who use text-tospeech technology – a computerised voice.

Not only is it void of emotion, but it is empty of personality.

Academic Rupal Patel, a professor at Northeastern University, Boston, is dedicated to providing people who use synthetic speech with the opportunity to get their voice back. Using her knowledge of speech and technology Rupal founded VocaliD in 2015.

PIONEERING “If someone has never spoken then it is as though they have never really been heard in their own voice. If they have spoken before then they know how important their own voice is in terms of forming relationships,” says Rupal.

VocaliD is a voice technology company creating customised digital voices for people who are unable to speak. There are many reasons a person might lose their voice, from illness to degenerative conditions such as motor neuron disease (MND).

One of the most famous users of text-to-

speech technology is Professor someone who is very tall, and Stephen Hawking, whose different accents, you’re not If someone has machine speaks in a going to get a good blend. If computerised American never spoken then you can bring them closer accent, despite him each other, then you can it is as though they to being from Oxford. have a solution that is more have never really VocaliD is reshaping amicable.” how we interact with been heard in intelligent speaking EMOTIONAL their own voice devices.

Each voice is unique and everyone has something TECHNOLOGY distinctive to say. VocaliD is The pioneering technology provides humanizing the voice inside the machine two services: one for people losing their and the results have been overwhelming. voice and one for those who have never Rupal recalls: “We get so many emotional spoken. Participants able to speak can responses from ‘I can’t believe I can use my bank, or donate, their voice via the VocaliD voice again’ to parents explaining they’ve website or a custom voice is created for never heard their child speak before – it is people with no ability to speak. very emotional.”

“The blending technology allows us to Our voice is one of our most important take whatever sound an individual can still tools, and it is a tool we need to protect. make and using our voice bank, we can find Gone are the days of generic text-to-speech somebody closest to them to mix the two devices, VocaliD is giving the gift of human voices together before we train the speak voice. synthesiser,” explains Rupal.

“Matching happens using an algorithm.

The algorithm uses a lot of different i MORE INFORMATION features: age, height, where they live,” she For more information on VocaliD visit, explains. “If you mix two voices together www.vocalid.co from someone who is very short and

Catch our full interview with Rupal on our website, www.enablemagazine.co.uk 82

www.enablemagazine.co.uk

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