The UK’s leading disability and lifestyle magazine
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WHO CARES?
Carers on the need for improved support
PARA SPORT
2020
March / April 2020
TIME FOR SEX EDUCATION
Actor George Robinson talks representation on screen
REDEFINE AUTISM
What is being done to change the definition of autism?
The Hague to Tokyo, get in gear for a year of disability sport
WE DECIDE
MINISTER FOR DISABLED PEOPLE
This WDSD it’s time to get together and celebrate diversity
Justin Tomlinson discusses the government’s plans for disability inclusion
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ASSURANCE FOR WHEREVER LIFE TAKES YOU
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Fuel consumption and CO2* figures for the Volvo XC40 range, in MPG (l/100km): WLTP Combined 31.0 – 141.1 (9.1 – 2.0). NEDC CO2 emissions 168 – 41g/km. Twin Engine WLTP electric energy consumption 3.7 – 4.0 miles/kWh. Twin Engine WLTP all electric range 26.1 – 28.0 miles. Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. *There is a new test used for fuel consumption and CO2 figures. The CO2 figures shown, however, are based on the outgoing test cycle and will be used to calculate vehicle tax on first registration. To be eligible to join the Motability Scheme you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate Mobility Component of Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment, which will be taken in lieu of the four-weekly rental for 36 months’ duration. 60,000 mile allowance over 3 years; excess mileage charges may apply. Available at participating retailers. Offer not available with other promotions and may be subject to change. For full terms and conditions, visit www.motability.co.uk. Motability Contract Hire Scheme is administered by Motability Operations Limited (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London SE1 9HB.
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Welcome Spring into the latest issue of Enable, because we’ve got a lot in store…
The UK’s leading disability and lifestyle magazine
EDITOR’S PICKS... 18 ENABLE REVISITS: AUTISM AND MENTAL HEALTH Returning to the campaign to redefine autism under the Mental Health Act, we speak to the organisations spearheading change. 30 PREGNANCY, DISABILITY AND ME Two women share their experiences of pregnancy whilst living with a disability, and what needs to change to better support expectant mothers. 82 THE POWER OF ART Art can unite the world, and we talk to the Indian artist with Down’s syndrome changing perceptions one painting at a time.
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Lorne Gillies, Editor
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PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITERS Emma Storr emma.storr@dcpublishing.co.uk Saskia Harper saskia.harper@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk
ENABLE MAGAZINE www.enablemagazine.co.uk
FOR CHARITY
This time last year we were preparing to hit the hills for the Glasgow KiltWalk, now one of us is getting ready for an SASstyle abseil for the MS Society off the Forth Rail Bridge. Eeek!
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ONLINE The Enable team love to chat, and we want to speak to you! Catch up with the team at this year’s Naidex event. We’ll be at stand N874.
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Behind the scenes
TIME TO TALK
PIC: ©TOKYO 2020 / MIKA NINAGAWA
I
t looks like 2020 could be the year for disability representation – and we couldn’t be more excited. Getting closer to the Invictus Games and Tokyo Summer Paralympic Games 2020, inclusion and celebration of disability is taking centre stage. World championships or simply getting active for the first time: there’s no denying the magic and we take in the atmosphere on page 22. Speaking of the importance of Team GB Paralympians, Minister for Disabled People, Work and Health Justin Tomlinson enthused: “Disabled people can pursue their dreams without barriers,” during our interview on page 53. Representation of disability is also being made on the big and small screen. One-character banishing barriers is actor George Robinson, who is a wheelchair user and the latest cast member for Netflix’s Sex Education – we speak to George on page 68. Relationships are an important part of life, and when caring comes into play a relationship may be altered. You know you’re the best person to care for your loved one, even so, it’s important you care for your own wellbeing. We ask: who cares for the carer? over on page 13, before looking at the best spots for respite. All this plus much more lies ahead, I hope you enjoy reading it as much as we enjoyed making it. Let us know what you think by emailing editor@dcpublishing.co.uk or pop by for a chat at this year’s Naidex event – we’ll be Get in touch at stand N874. See you next issue! editor@enablemagazine.co.uk
Never miss out on the latest news and interviews by following us on social media @EnableMagazine, or check out the website. Our top read is the extended interview with Mat Fraser (or read on page 56).
©DC Publishing Ltd 2020. 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.
WIN
A family glamping break at Wigwam Holidays Ball Hall Farm on page 36.
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What’s inside March/April 2020
Interview
10 ‘DISABILITY IS NOT A BARRIER’ Actress Jamie Brewer speaks to Enable about her career. 68 LET’S TALK ABOUT SEX (EDUCATION) Actor George Robinson talks breaking barriers around sex, disability, and the media.
Voices
28 THINKING AHEAD After the Australian fires, our columnist asks: how do you prepare for evacuation with disability? 53 DISABILITY AND POLITICS IN 2020 Justin Tomlinson discusses government plans. 82 THE POWER OF ART The artist behind #LotsOfSocks speaks to Enable.
Care
13 THE REAL FACE OF CARE When you care for a loved one, 4
who can you turn to for support? A carer shares her experiences. 16 UNDERSTANDING RESPITE A few hours a week or a full weekend: respite is the secret to success as a carer.
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Health
25 THE JOURNEY BACK TO CIVVY STREET A veteran reveals how support from charity helped when adapting to disability. 33 THE MISSION TO STOP MS We go into the lab to learn what is being done to help find a cure for MS. 40 LET’S GET PHYSICAL Grab your kit and get active with adapted support.
Sport
22 THE POWER OF SPORT Head to the starting line for a big year of parasport.
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enable contents
50
30
60
Spotlight
18 ENABLE REVISITS: AUTISM AND MENTAL HEALTH Return to the campaign to redefine autism. 30 PREGNANCY, DISABILITY AND ME Two women share what more needs to be done to help women with disabilities during pregnancy. 38 CELEBRATING DIVERSITY World Down Syndrome Day is an event to celebrate what makes you unique. 50 ENCOURAGING INDEPENDENCE Supported living is a fantastic way to stay social and independent.
Creative
38
Life
Employment
58 TRANSFORMATIONAL TECHNOLOGY Take a look at the most innovative updates in technology.
73 DECIDING TO DISCLOSE When it comes to hidden disabilities, how should you disclose this at work?
46 THE DIARY The dates not to miss this March/ April.
64 PRODUCT ROUNDUP Our top adaptive products on the market. 81 PASSION FOR FASHION What more can the fashion industry do for disabled consumers?
Travel
20 THE PLAY WITH A TWIST Go behind the curtain with inclusive theatre productions.
43 COME FLY WITH ME Accessible air travel is changing, we speak to airports to learn how.
56 FIVE MINUTES WITH MAT FRASER Mat Fraser chats the future of disability in the arts.
48 ACCESSIBLE PUBLIC TRANSPORT Going from A to B has never been easier.
71 PUTTING STRESS IN BALANCE Maintain a healthy balance at work.
76 MAKING CAREER MOVES We look at how you can progress in the workplace.
Education
78 ACCESS ALL APPRENTICESHIPS Earn while you learn with adapted apprenticeships.
Motoring
60 THE REVIEW: SKODA SCALA Alisdair Suttie gets behind the wheel of the Scala and gives his verdict. 62 THE BIG EVENT SUMMER 2020 Don’t miss The Big Event this July.
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PARALYMPIANS CALL ON COMMUTERS TO RECOGNISE THE NEEDS OF DISABLED A GOVERNMENT INITIATIVE HAS been launched to raise awareness of the issues faced by disabled people on public transport. Paralympians Anne Wafula Strike and Ade Adepitan backed the inclusive transport campaign, launched by the Department of Transport (DfT). The ‘it’s everyone’s journey’ campaign is hoping to prompt commuters to consider how their behaviour on public
LUCY LINTOTT HAS DEFIED the odds and given birth to a healthy baby boy, after becoming Scotland’s youngest person to be diagnosed with motor neuron disease (MND). Diagnosed with MND aged 19, Lucy, now 25, and her partner Tommy Smith announced they were expecting in September of 2019 on social media. The pair have named their son, LJ, who weighed 7lb 3.05oz. Dubbed an MND Warrior, as a campaigner, Lucy has raised nearly £200,000 towards finding a cure for the condition. Prior to falling pregnant, Lucy had spoken about the prospect of carrying her own child with her neurologist. Read the experiences of other women with a disability during their pregnancy on page 30. You can follow Lucy on her blog, lucysfight.com
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Anne Wafula Strike
transport may impact others with hopes to encourage the public to be more mindful of their fellow passengers. Disability charity Scope has revealed that one in four disabled people say the attitudes of other passengers prevents them from using public transport. ‘it’s everyone’s journey’ is hoping to raise awareness about the needs of commuters with a physical disability and people with a hidden disability when
MND campaigner Lucy Lintott welcomes baby boy
PIC: © JEFF MOORE
News travelling on public transport. Of the initiative Transport Secretary Grant Shapps said: “Our ‘it’s everyone’s journey’ campaign highlights that we can all play a part in making transport more accessible for disabled people. Because I believe we should all be making a determined effort to make public transport accessible to everyone, and I am committed to accelerating the pace of change.”
MP READS NAMES OF PEOPLE WHO DIED STRUGGLING WITH BENEFITS SYSTEM LABOUR MP, DEBBIE ABRAHAMS spent three minutes in the Houses of Parliament reading the names of those who died after experiencing challenges from benefits system. Announcing more than 20 names, Ms Abrahams highlighted that many of the people died by suicide after being found ‘fit for work’ or through illness after losing their benefits. Ms Abrahams told MPs: “These are people’s family members and we are failing them, we’re absolutely failing them. We mustn’t let this continue.” Continuing the Commons debate, Ms Abrahams announced she has requested a full independent inquiry.
enablemagazine.co.uk
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Get the freedom to explore with the Ford Motabilit y Scheme. Use your Mobilit y allowance to choose from a wide range of Ford vehicle s at our net work o f p a r ti ci p ati n g F o r d d e ale r s ac r o s s th e U K. D e d i c ate d s p e ci ali s t s w i ll li s te n to y o u r n e e d s a n d h e lp y o u t h r o u g h e v e r y s te p o f t h e p r o ce s s to f i n d y o u r p e r f e c t F o r d v e h i c le . To f i n d o u t m o r e, v i s i t f o r d . co .u k /m o t a b i lit y o r c all 03 45 60 40 019.
Available on selected Dealer stock only. Please contact a participating Ford Dealer for more information. Model shown is a Ford EcoSport ST-Line 1.0L EcoBoost 125PS Manual Petrol with optional 18´´wheels and ‘X Pack’ (including privacy glass): Fuel Economy mpg (l/100km) Combined 43.5 (6.5) CO2 emissions 120g/km.† Figures shown are for comparability purposes; only compare fuel consumption and CO 2 figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. † T here is a new test used for fuel consumption and CO 2 figures. The CO 2 figures shown, however, are based on the outgoing test cycle and will be used to calculate vehicle tax on first registration. Available on selected dealer stock only. Subject to availability. No cash alternatives are available. This programme is subject to the standard conditions of the Motability Scheme hire agreement. Full written details and quotations available on request from a Ford Authorised participating Dealer of Motability Operations Limited. Motability Scheme vehicles are leased to customers by Motability Operations. Motability Operations Limited is authorised and regulated by the Financial Conduct Authority under reference number 735390. To qualify you must be in receipt of the Higher Rate Mobility Component of Disability Living Allowance (DLA), the Enhanced Rate Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP) and applications must be made with participating dealers between 1st January and 31st March 2020. Available on selected dealer stock only. For more information, please see www.ford.co.uk/motability
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enable news
News
Sir Lenny Henry
THE NATIONAL DIVERSITY AWARDS have opened their nominations for the 2020 awards, in association with ITV News. Working in conjunction with the National Diversity Awards, ITV News will highlight role models and community organisations across regional and national news channels. Last year saw a record breaking 28,000 nominations, with nominations for the 2020 awards now underway.
Celebrity endorsements have already included Sir Lenny Henry, Katie Piper and Stephen Fry, with Emmerdale actor Ash Palmisciano joining the judges to help go through and whittle down the final nominees. The shortlisted nominations are expected to be announced in June. The National Diversity Awards is scheduled to take place on September 25, at Liverpool Cathedral.
COFFEE SHOP BREAKS DOWN EMPLOYMENT BARRIERS DISABILITY CHARITY LEONARD CHESHIRE UNVEILED Social Bean, a coffee shop run by – and catering for – disabled and nondisabled members of the community. Located in Swansea, Social Bean is the charity’s first social enterprise and has been designed with accessibility in mind from the initial process. The coffee shop will see staff joined by volunteers and people undertaking work placements in a bid to gain employment skills and experience. You can find out more about how to get involved with Social Bean by visiting, www.leonardcheshire.org 8
PIC: © BBC PICTURES
Nominations open for national diversity awards
Down’s syndrome advocates call for law to reduce abortion limit CAMPAIGNERS HAVE CALLED FOR the law to be changed on when a pregnancy can be terminated if a foetus has a high chance of Down’s syndrome. Writing to Health Secretary Matt Hancock, campaigners have stated that all non-fatal disabilities should fall under the standard 24-week abortion limit. It is estimated that 40,000 people in the UK live with Down’s syndrome – according to charity, Down’s Syndrome Association. The current law, under the 1967 Abortion Act, allows termination of a pregnancy where the foetus may have Down’s syndrome to be carried out at any time up until birth. Expectant mothers can undertake testing to detect if their unborn child will have the condition, with many women commenting they then feel “pressured to terminate.” Responding to the campaign, charity British Pregnancy Advisory Service said it opposed “any attempt to stop women from making their own decisions about whether or not to continue a pregnancy.”
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SPEND YOUR MONEY AS WISELY AS YOU SPEND YOUR TIME ŠKODA KAMIQ SE 1.0 TSI 115PS
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To qualify for this offer you must be in receipt of the Higher Rate Mobility Component of Disability Living Allowance, War Pensioners’ Mobility Supplement, Enhanced Rate Mobility Component of Personal Independence Payment or Armed Forces Independence Payment (AFIP). Models shown are not UK specification. *Exclusions apply. Prices and specifications are accurate at time of publication. Offers may be varied or withdrawn at any time and are not available in conjunction with any other offer. Participating retailers only. Subject to availability. Valid for applications to Motability from 1 January 2020 to 31 March 2020.
Official fuel consumption WLTP for the ŠKODA KAMIQ range in mpg (litres/100km): Combined 67.3 (4.2) to 55.4 (5.1). NEDC equivalent CO2 combined emissions for the ŠKODA KAMIQ range are 112 to 116 g/km. Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other vehicles tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. There is a new test used for fuel consumption and CO2 figures (known as WLTP). The CO2 figures shown however, are based on a calculation designed to be equivalent to the outgoing (NEDC) test cycle and will be used to calculate vehicle tax on first registration. For more information, please see www.skoda.co.uk/owners/wltp-info or consult your retailer. Data correct at January 2020. Figures quoted are for a range of configurations (including non-UK) and are subject to change due to ongoing approvals/changes. Please contact your retailer for further information.
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‘Disability is not a barrier’ Actress and model Jamie Brewer is advocating for change, helping to fight negative perceptions around disability. Speaking to Lorne Gillies, Jamie reveals why disability shouldn’t hold you back
I
t was in 1999 at College for Kids that Jamie’s passion and love of the arts flourished. Before long, the American actress and model was performing in dramas, musicals and comedy performances and Jamie’s talent started to get recognised. Living with Down’s syndrome, Jamie knew that her disability wouldn’t be a hindrance to her career – and why should it be?
Walking during NY Fashion Week
ON THE SCREEN
“I have a theatre background,” Jamie begins. “Going from theatre to the screen was a very easy transition for me. I was using my theatre skills to help me transition into media and the entertainment industry.” In 2011 a show that would explode onto television sets across the world aired on American channel FX: American Horror Story: Murder House featured celebrated actors including Jessica Lang, Connie Britton and Evan Peters alongside a storyline that engrossed millions. Each season of the show is a selfcontained miniseries, but it was the first season of American Horror Story which propelled its cast to new heights. For Jamie, getting involved with the show was not only her first audition to work in television, but the start of her career as a professional actor. Jamie enthuses: “Going from a theatre background and coming right out the gate and getting introduced to the industry was American Horror Story – as Adelaide (Langdon) – was great.” Since the first season of American Horror Story, Jamie has appeared in follow on series including Coven, Freak Show, Cult and Apocalypse. From creators Ryan Murphy and Brad Falchuk, the show has transcended across genres
As Gina in Turnover
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interview
showing characters in a multitude of lights and situations. The most poignant aspect of American Horror Story is its dedication to having a inclusive cast.
PICS: KMR TALENT
REPRESENTATION
“Having [actors with a disability] brings diversity to the projects of directors and writers. It’s bringing even more diversity into their work,” Jamie continues. “Disability doesn’t hold people back from doing a great job. People need to know that we can all learn and work in the media industry, or any media: theatre, music; everything. “Giving actors with a disability the chance to show who they are and what they can do means being accepting and allowing growth.” Since her big break, Jamie has worked on television shows including Love You More, and most recently, multiple short films. From Turnover, released in 2019, to Snow Moon Awakening, which is currently in pre-production, Jamie is proof that disability is no barrier to working in the media. Not to mention, becoming the first woman with Down’s syndrome to walk the runway during New York Fashion Week in 2015. And, there’s no denying that we’ve looked at our favourite actors and aspired to be like them one day – who wouldn’t love to spend a day working on an award-winning television set? For people looking at Jamie on the screen she enthuses: “Disabled people can do anything. It’s great to have a role model on the screen for children who do have disabilities, this can give them inspiration and encouragement to never be afraid.” Alongside her work in film and television, Jamie is a powerful force in disability awareness and breaking barriers to negative attitudes.
a detrimental emotional impact. Jamie says passionately: “Positive language makes everyone feel happy and good within themselves, and it allows disabled people to have people around them who are always positive. Blocking out the negative and staying positive is a big key. “Being positive is also a form of encouragement for everyone, and especially people with a disability.” Through Jamie’s campaigning, and involvement with lawmakers, the R word has been removed and changed to Intellectual Developmental Disability in Texas legislation. Advocating for the rights of the disabled community on and off screen, Jamie is a powerhouse when it comes to ensuring everyone is treated equally and with language that is positive. It’s no surprise she was included in the top 50 Game Changers for the Special Olympics.
THE R WORD
WDSD 2020
In 2018, Jamie was involved with a campaign to eradicate use of the words “retard” and “retarded” in society during an event called, Spread the Word to End the Word. Campaigning within her home state of Texas, Jamie also lobbied lawmakers to make official language of disability used more respectful and less derogatory. After all, negative language can have
Successfully working in film and television as an actor with Down’s syndrome and advocating for the rights of others, Jamie’s living her dream. The next event Jamie is set to get involved with is World Down Syndrome Day on 21 March. “That day brings a lot of positive awareness and it brings everyone together to show respect and support to
Giving actors with a disability the chance to show who they are and what they can do means being accepting and allowing growth
the Down’s syndrome community,” Jamie enthuses. “Plus, it allows everyone during the event to be crazy and wear lots of crazy socks.” Disability is an aspect of your identitiy that is to be celebrated and not a reason to be held back or even believe you can’t reach all your goals. This is a message that Jamie promotes, she adds: “Disability is not a barrier. In a lot of families, it is a blessing, and for my talents, specifically, it is being in the media that has showed that people with disabilities can learn to do the same things that other people in society can do. For example, we could swap and I could interview you,” Jamie laughs enthusiastically. “I know I’ve said this quite a lot, but: be inspired, and be inspired every day. Always use your voice in everything you do,” advises Jamie Fervently. “Don’t let disability hold you back. Say yes you can instead of no you can’t, and never give up on your dreams no matter what your dreams are.” FOR MORE INFORMATION
Series one to eight of American Horror Story are available on Netflix UK (www.netflix.com/gb/). You can keep up to date with Jamie on Twitter, @MsJamieBrewer
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All-New
Renault CAPTUR Also available as a Plug-in Hybrid * Your choice, your CAPTUR
Search Renault CAPTUR or visit renault.co.uk/motability *Orders open in April 2020. MPG and CO2 figures not yet available for the All-new CAPTUR Plug-in-Hybrid. Please consult your local dealer when placing orders. The official combined fuel consumption figures in mpg (l/100km) for the All-New CAPTUR range are: 44.1 (6.4) – 58.9 (4.8). The official CO 2 emissions are 127 – 106g/km. WLTP figures shown are for comparability purposes. Actual real world driving results may vary depending on various factors including any accessories fitted after registration. CO2 figures are based on the outgoing (NEDC) test cycle which will be used to calculate vehicle tax on first registration until April 2020. Renault UK Limited is a credit broker (not a lender) in relation to this financial promotion. Motability Scheme vehicles are leased to customers by Motability Operations Limited (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance (DLA), the Enhanced Rate Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP) and Advance Payment offers are only valid for Motability applications made with participating dealers by 31 March 2020 and registered before 30 June 2020.
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enable care
The real face of care Carers across the country provide invaluable support to their loved ones every day, but where can they turn when they need help? One carer shares how more and improved help could transform carers’ lives for the better enablemagazine.co.uk
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t’s estimated that carers provide £132 billion worth of care each year – almost the cost of a second NHS. With seven million carers in the country, and 60 per cent of us expected to take on a caring role at some point in our lives, it’s vital that support for carers is the best it can possibly be. But, with 61 per cent of carers reporting poor physical health, and 72 per cent reporting poor physical health as a direct result of their caring role, much more needs to be done to ensure carers are well supported in their role.
REALITY
Clare Cowling cares for her son, who has multiple sclerosis (MS). “My husband and I are both in our 70s, so we get very tired,” explains Clare. “It’s only going to get worse as the illness progresses, so we’re very worried for him, and we’re worried for us as well.” Clare has given up her full-time job to work part-time, which enables her to spend more time caring for her son, but is also contributing towards financial strain and worry. “I go to London one day a week for work and that’s my holiday, that’s my break,” Clare continues. “I get away from the house and all the worries, and I don’t have to think about things. I do work from home a lot, but I have to keep working because we need the money.” Clare’s story is just one of thousands of carers across the country who are not getting the support they need or deserve. Without the right help carers can experience burnout, which can in turn lead to their own physical and mental health problems. “Health-wise, I don’t know how it impacts on me, because I don’t really have time to think about it,” says Clare. “I can’t afford to be sick, frankly. It’s obviously physically very tiring, and it’s seven days a week so you don’t get a day off. But, it’s the mental strain more than anything because you’re watching someone you love deteriorate all the time. The mental strain is worse that the physical.”
SELF-CARE
It can be hard to find time for yourself, but using any time that you do have to take part in activities you enjoy can help keep worries and stresses at bay.
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I can’t stress enough how wonderful the people have been who have tried to help us “Caring means something different for everyone – but one thing that’s true for every carer is that you cannot keep going without a break,” explains Ruby Peacock, head of policy and public affairs at Carers UK. “Taking a break from caring is vital for recharging the batteries and having time for yourself – whether it’s listening to music, taking part in a physical activity, or spending time with friends.” From catching up with a favourite TV show or reading a book to provide an escape, the benefits of using personal time to your advantage can be transformational. “I go for walks whenever I can manage,” Clare adds. “I like gardening as well. It really helps keep me sane.”
CHARITY
Carers UK is just one charity working hard for the rights of carers, providing support, and campaigning for additional services from the government. The charity can provide advice on caring, as well as information about financial support and maintaining good physical and mental health. “We campaign for better rights and practices so that carers don’t have to put their own needs last,” says Ruby. “Caring can be demanding and often carers prioritise the needs of the person they look after, leaving their own needs at the wayside. Practical support which is easy to access can ensure that carers are supported themselves, and are able to care without damaging their own health and wellbeing.” The charity also run their online forum, where carers from across the country can offer HAVE advice and support to others YOUR SAY in a similar position. With What additional different forums for various guidance would conditions, topics and general you like to see? conversation, it can be a great Let us know place to let off steam and @EnableMagazine
Clare
connect with others who can empathise with your situation.
ALLEVIATE STRAIN
Though charities are working tirelessly to provide support, what is ultimately needed is additional funding to services, to alleviate the strain on unpaid carers to ensure they are continually supported. “I can’t stress enough how wonderful the people have been who have tried to help us, and how caring they are,” Clare emphasises. “But I worry that this will disappear with our current government’s attitude to social care. All they’ve got to do is put some more money in. All the people who visit us are wonderful and they’re so caring, but they’re rushed off their feet. The NHS and social services need more staff and more resources.” “Our social care system doesn’t work for a lot of people and has undergone many years of underinvestment,” says Ruby. “We’re calling on the government to reform the system and ensure it receives sustainable, long-term investment; so that disabled people have the quality care and support services they need, and family members are better supported – practically and financially – with their caring responsibilities.” Unpaid carers across the UK silently carry out hours of unpaid work every week, saving the government billions of pounds each year. With three in five of us becoming a carer at some point in our lives, it’s vital that support services are readily available to provide advice, information and respite to those tirelessly caring for their loved ones. FOR MORE INFORMATION
Support is available from Carers Trust (www.carers.org) and Carers UK (www.carersuk.org).
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UNDERSTANDING
Respite
Respite is crucial to the health of carers and can also be beneficial for the person that you care for. Important for physical and emotional health, respite allows carers to rest and rejuvenate before they return to their caregiving duties
A
n allocated period in a week to yourself to going on a holiday, respite comes in many forms. The main emphasise of respite is to look after your personal needs, not to complete tasks directly related to the person you care for. The main forms of respite care include your loved one attending a day centre, homecare from a paid carer, a short stay in a care home and respite holidays. Each type of respite offers different opportunities and benefits, but they all have a common goal: ensuring the health and wellbeing of carers.
IMPORTANCE
Everyone deserves a break sometimes and this is especially important for carers. Regardless if it’s a few hours a week on a regular basis or a holiday once a year, this time away can make a big difference – and is not something to feel guilty about. Making time for respite will improve your energy levels and give you time to work on your own wellbeing, preventing
Along with the host of benefits for you as a carer, the person you care for can also benefit 16
Awarding grace with Revitalise Revitalise Respite Holidays (www. revitalise.org.uk) create unforgettable respite breaks for disabled people and their carers. The charity are giving carers and the person they care for the chance to win a holiday with the Grace Award for Caring. The new award has been created in partnership with the Holiday Property Bond (HPB) to recognise and reward partners, relatives and friends who devote their lives to caring for their loved ones. Award winners will be given the opportunity to relax and
you from becoming exhausted or run down. Along with the host of benefits for you as a carer, the person you care for can also benefit. If they spend time staying with friends or loved ones, at day centres, in residential care or on a holiday themselves, they will be given the opportunity to socialise with new people, try new activities and experiences.
AVAILABILITY
Depending on the benefits you and the person you care for receive, you could get assistance with the cost of respite. This could be from your local authority, charities or from a grant. It is also possible to self-fund respite care if you are able and happy to do this.
recharge on a HPB holiday while the person they care for goes on a break with Revitalise.
A needs assessment for the person you care for and a carers’ assessment for you are normally required to receive funding from your local authority. These will be conducted by social services and help to decide what support you are both entitled to. No matter the type of respite care you decide to utilise, it can be key to looking after your physical and mental wellbeing, and ensuring you are in the best place to care for your loved one. FOR MORE INFORMATION
Get further advice on respite from Carers UK (www.carersuk.org), Respite Association (www.respiteassociation.org) or your local authority (www.gov.uk).
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HELPING YOU TAKE CONTROL OF YOUR CARE FOLLOWING A SPINAL CORD INJURY At Tetra Live-in Care we take extra time to get to know you, your needs and preferences allowing us to deliver high quality, professional and friendly care. We provide bespoke, fully managed care packages giving you maximum flexibility and continuity of care. - Care solutions to suit your preferences
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28/02/2020 15:44
ENABLE REVISITS
Autism and mental h
In 2019, we shone a spotlight on the definition of autism under the Mental Health Act. Defined as a mental disorder under the act, many autistic people have faced detention and inappropriate care. Saskia Harper returns to the issue, to uncover what has progressed in the last 12 months
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A
utism is not a mental health condition; however, it is defined as a “mental disorder” under the Mental Health Act 1983. Campaigners say that this is one of the reasons that hundreds of autistic people in the UK are living in inpatient care that doesn’t cater to their needs. This definition of autism and learning disabilities as mental disorders in the Act means that adults living with specific conditions can be legally detained and held in secure facilities for assessment and treatment, even if they don’t have a mental illness. As a result, people living in mental health hospitals are often in the care of people who don’t understand or have a background in autism or learning disabilities, which can result in
inadequate care, or abuse. The average length of stay in a mental hospital for someone in this situation is five and a half years: a timeframe that campaigners and charities argue is far too long, and unnecessary if the right community-based support was simply made available instead.
CAMPAIGN
The National Autistic Society is one of these charities, raising awareness about the steps necessary to ensure autistic people are not inappropriately sectioned and taken into inpatient care against their and their families’ will. “We know that once autistic people are in mental health hospitals, it’s very unlikely to be a positive experience,” says Tim Nicholls, head of policy at the
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spotlight
l health
staffed by experienced professionals who understand autism; increased funding into adult social care to meet the people’s needs in the community; and for the government to examine the law, and review the definition of autism and learning disabilities as mental disorders under the Mental Health Act. “Fundamentally, it’s a rights issue,” continues Tim. “You wouldn’t see other situations where the failure to put in place the right support to help someone live independently, is then used as grounds to detain them and deprive them of their liberty.”
LAW
“
People with learning disabilities and autism have exactly the same rights as everyone else
“
charity. “The research shows people become overmedicated, their physical and mental health can deteriorate further. “Although the overall number of people with a learning disability or autistic people in mental health hospitals has gone down since 2015, it hasn’t gone down by the amount it needs to; and the numbers just relating to autistic people have gone up. That’s particularly concerning for us at National Autistic Society because we think it highlights a lack of the community-based support that actually works for autistic people.” According to the charity, there are three things that would help alleviate the crisis of autistic people living in mental health hospitals: improved community mental health support,
In February this year, the Equality and Human Rights Commission (EHRC) took the first legal steps against Health Secretary, Matt Hancock, for repeated failures to provide appropriate accommodation for people with learning disabilities and autistic people. The pre-action letter condemned the inappropriate inpatient care of more than 2,000 people, and argued that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights. The letter follows the discovery of abuse at Whorlton Hall last year, a privately-run, but NHS-funded hospital for autistic adults and adults with learning disabilities. The abuse was uncovered by a BBC Panorama documentary, which also broke the news of similar abuse taking place at Winterbourne View eight years earlier.
TRANSFORM
“We’ve heard so many heart-breaking stories about people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years,” explains Joanna Owen, solicitor at EHRC. “There seems to be an endemic problem with the current inpatient care system for people with learning disabilities and autism and urgent action is needed. We’re not convinced that the DHSC will meet its latest deadlines to move patients from inappropriate inpatient care to community-based settings. This
suggests a systemic failure to protect the right to a private and family life, and right to live free from inhuman or degrading treatment or punishment.” Some of the main concerns of the EHRC include the fact that since 2015, targets have involved percentage reductions, as opposed to bringing an end to all inappropriate detentions. “[The DHSC] have not been fast enough in making changes and have consistently missed their own deadlines,” adds Joanna. “Actions speak louder than words and the DHSC must follow through on its commitments so that people with learning disabilities and autism are moved from inappropriate inpatient care to community-based settings.”
POSITIVE STEPS
If you’re concerned that a loved one may be at risk of being detained under the Mental Health Act, there are steps you can take to prevent this. The National Autistic Society recommends you request a care and treatment review (CTR), which are used by NHS England to reduce the number of people going into mental health hospitals, while also improving the level of care provided to an individual. “People with learning disabilities and autism have exactly the same rights as everyone else,” Joanna emphasises. “It’s vital that the DHSC acts now so that everyone can realise their right to live free from inhumane or degrading treatment and have access to good quality health care that’s close to home and easily accessible.” The EHRC’s legal challenge is the first step towards improved care and autonomy for autistic people currently detained in mental health hospitals, and to prevent more people being sectioned. Alongside the tireless campaigning from families and charities, it’s time for real change, to ensure everyone has the necessary support to live an independent life.
FOR MORE INFORMATION
If you require additional advice, the National Autistic Society (www.autism.org.uk) can help. Know your rights with the Equality and Human Rights Commission (www.equalityhumanrights.com).
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enable creative
Play with a twist
The
R
The curtain is falling on inaccessible theatre productions, as accessible plays and shows increasingly take centre stage. One adaptation is bringing a classic to life, while highlighting the benefits of inclusive theatre shows for all
amps on the Moon (Ramps) was first launched in 2014, to recognise and improve the lack of representation and employment of disabled people in performing arts. A consortium of seven theatre companies, Ramps is creating opportunities for disabled actors, while bringing fully accessible shows to UK audiences.
THEATRE
The next project, coming to stages across the participating theatres this spring, is Oliver Twist, with a real-life twist: the main characters will be played by D/deaf/HoH actors, and Fagin’s gang will communicate in British Sign Language (BSL). “Accessible theatre is a human right and everybody deserves to be able to experience live theatre,” explains Amy Leach, associate director of the Leeds Playhouse, and Oliver Twist’s director. “For too long, the norm has been to prioritise the experience of people who don’t identify as disabled.”
MODERN TWIST
Determined to bring an accessible version of Oliver Twist to the stage, the Leeds Playhouse commissioned a new adaptation, which will show the classic tale in a brandnew light, while also enabling disabled creatives and audiences to enjoy. “One of the ideas behind the Ramps shows is that they should be big titles, crowd pleasers that people want to see,” Amy says. “When I was looking at existing adaptations of Oliver Twist, I realised that some of them had a really high content of Dickensian language, which is pretty impenetrable for everyone, but even more so if your first language is BSL, or if you have a learning disability.” The performance will include the use of integrated creative sign language, audio description and captioning at every performance. Rehearsals have also been adapted, with scripts being shown on TV screens, so that D/deaf/HoH actors don’t have to hold them while signing.
DYNAMIC
Contributing to the decision to include BSL in the classic story was the Milan Conference of 1880, at which it was decided that use and teaching of sign language would be banned in schools. This meant D/deaf/HoH people living in the Victorian era had to use other means to communicate. This makes today’s adapted production of Oliver Twist the perfect outlawed language for the gang to use in the play, bringing a new dynamic to the much-loved classic. “The great thing about making things accessible is it’s not just one person or group that benefits: it benefits everyone,” Amy enthuses. “We tell stories because we want to explore the world and the people in it. That’s got to include everybody, so it’s absolutely vital that theatre is fully accessible.”
Accessible theatre is a human right and everybody deserves to be able to experience live theatre
FOR MORE INFORMATION
To buy your ticket for a performance of Oliver Twist near you, visit www.rampsonthemoon.co.uk
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The
Power of
Sport
Parasport has the power to transform your outlook on life, and there’s no denying that 2020 is the year for parasport. Ahead of the Invictus Games and the Summer Paralympics, athletes talk to Emma Storr about the life changing impact of sport
S
port has the power to change your perspective on life, aid mental health problems and combat social isolation. The benefits of taking part in parasports are undeniable and something Vicki Ross and Antony Young have experienced while training for the Invictus Games The Hague 2020.
NEW WORLD
Both Vicki and Antony are part of the sitting volleyball team for the Games, taking place in The Netherlands this May. The event will bring together over 500 competitors from 19 nations to compete in a series of adaptive sports. Since being selected for the team and starting training, sport has been lifechanging for Vicki, she explains: “Where sport had previously been a big part of my life, I hadn’t done anything for years due to my injury so it really opened up a whole new world for me.” The opportunity to compete in a sport with like-minded people has given Vicki a new lease of life. “There is no environment like this, it’s judgement free,” stresses Vicki. “You don’t have to worry and it’s an environment where everyone gets you, that’s second to none, it’s like an extra family really.” Training for The Hague has been Antony’s first experience of sitting volleyball, a form of the sport for athletes with a disability. It first piqued his interest after meeting Invictus coach Richard Osborne. “It’s a sport that I’ve done in the last
few years and I’ve fallen in love with and really enjoyed playing,” enthuses Antony.
TEAM WORK
The opportunity to be part of a team has been a major component of Vicki and Antony’s enjoyment of the sport. “For me it’s like being a child at Christmas again,” reveals Vicki. “I have competed at a high level of sport before, but it’s being part of the team and just supporting my teammates and I guess competing against people with disabilities who have been through the same stuff you have.” Taking part in a sport alongside people who know what you are going through can be incredibly beneficial, forming a sense of belonging and community. “In an individual sport you’ve got to pick yourself up, but in a team sport someone is there to pick you up, too,” stresses Antony. “Being around people a lot like yourself who are competitive and using that competitive edge in sport is great for recovery of any kind.” Starting a new sport has also opened their eyes to the lack of opportunities for people with a disability in different sports and how difficult it can be to get started. “Why shouldn’t it be available? That’s the question,” offers Antony. “Everyone deserves a chance to have the opportunity to do some sort of sport whether individual or a team sport. “This team, the way we’ve come together and become such a close-knit group of people makes it easier.”
TOKYO 2020
Following on from the Invictus Games will be the Tokyo Summer Paralympic Games 2020, where Team GB will be taking part in a range of sports. As the 16th Summer Paralympic Games, and excitement for the event is already building. With a total of 537 events from 22 sports taking place the Games will continue to shine a light on the impact of parasport for the disabled community. Sporting events set to take place include boccia, para swimming, and, also, sitting volleyball. And no matter the level of sport you are involved with, the positive mental benefits are undeniable. Joining a
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PIC: ©TOKYO 2020 / MIKA NINAGAWA
DIVE INTO PARA SWIMMING
“
Before I was always such a pessimist now I can look to the future and have optimism
“
parasport team has completely changed Vicki’s perspective, after acquiring a disability, she says: “Before I was always such a pessimist now I can look to the future and have optimism.” “If somebody sees my story and thinks well I’m going to try new sports, great,” says Antony. “I think I have already progressed as a person mental health wise and physical health wise, I’m much fitter than I was at the start being back and doing sport.” Antony would encourage people with a disability to try different adapted sports until they find the perfect fit for them. As we prepare for the Invictus Games and Summer Paralympics, are you ready to discover the magic of sport?
2020 truly is the year of para sport, with adrenaline-fuelled events taking place across the world. One such event is the 2nd Trisome Games in Antalya, Turkey – a competition run by the Down Syndrome International Swimming Organisation. Thomas Raddings is the male team captain of Team GB’s Down’s Syndrome Swimming (DSS-GB) squad and will be representing at the Games this March (31 March – 7 April). Starting swimming at just five-years-old, Thomas soon discovered his passion for the pool. “I was spotted when competing at a swimming competition in Southampton and was asked if I’d like to join [DSS-GB],” Thomas remembers. “I worked hard to get good, but DSS-GB could help me to get even better.” At the end of March, Thomas will join his team as they head to Turkey to compete in the Games. One of the most exciting events on the para-swimming calendar, the competition will showcase some of the best swimming talent, and push competitors to the limits. “[The 2nd Trisome Games will be my] first international and world championship as a male team captain,” enthuses Thomas. “Being made male team captain made me very proud and happy. It’s a great honour.” You can stay up-to-date with the 2nd Trisome Games and DSS-GB by visiting, www.dsiso.org
FOR MORE INFORMATION
See what parasports you could get involved with at www.parasport.org.uk
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02/03/2020 09:40
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27/02/2020 16:23
enable health
Matt Edwards
The journey back to civvy street When leaving the military with a disability, it can be daunting to think about what comes next and where to turn for support. One charity is on the frontline, ensuring wounded, injured and sick veterans have a successful transition back to civilian life
S
ince 1932, Blesma, The Limbless Veterans charity, has been supporting veterans who have endured life-changing injury or limb loss on their journey from the military to civvy street. Through rehabilitation, welfare support and social activities, veterans who have experienced limbloss are able to maintain a link to their Forces career, while making a success of the move back to civilian life.
TRANSITION
Matt Edwards joined the Royal Marines in 2007, after a thriving career as an international athlete. Whilst on Special Forces Selection, Matt experienced multiple significant injuries and elected
to have a left below knee amputation. “I first came into contact with Blesma in 2018 when I was experiencing significant sensory and motor impairment to my left leg,” Matt remembers. “When I informed the charity I was facing amputation, the guidance the support workers and wider team offered was invaluable. My local support officer reassured me I was not alone during an extremely difficult time, and spent time with me in hospital.” For those in the Armed Forces, transitioning back into civilian life has its challenges, and adjusting to life as an amputee can amplify this, which is why the support Blesma provides is so vital. “Learning the skills and life lessons
that come with amputation is ongoing and I’m slowly learning what works for me,” continues Matt. “This means ensuring I’m active and healthy, as well as learning to have good stump care. “When so much of your life has changed due to injury, and you face transitioning into civilian life, it can be a daunting and lonely world. Having Blesma to contact, and the network of others who have been in similar situations to talk with, means there’s a wealth of knowledge and information to help you through. “You can very quickly become isolated without the strong support network of both your family and friends, and organisations like Blesma,” Matt adds.
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INSIGHT
Blesma can provide a variety of services, depending on your individual needs. Their support officers operate in different areas around the UK, providing advice and emotional support to veterans and their families. The charity can also give an insight into the process of being fitted for a prosthetic: their in-house prosthetics expert can offer in-depth knowledge and advice for any charity members who may be experiencing issues with their prosthetics, advocating on your behalf. Blesma runs various different clubs and activities: from golf and horse riding, to parachuting and scuba diving, there’s something for all interests and abilities. These sessions offer the opportunity to connect with veterans, and gain support from others who may have had similar experiences. Whether you’re seeking support regarding employment, finances or your mental health, Blesma is there to help.
CHALLENGE
The transformational effect that the right support can have when adapting to disability is invaluable. With the help of the charity, Matt is about to commence on a new challenge: the
Serving in the Armed Forces
Race Across America. “Sport and fitness have always been a huge part of my life,” enthuses Matt. “I saw the Race Across America as an opportunity to challenge myself following my amputation five months ago. I saw it as a way to start my new life and show myself I’m capable of anything despite my injuries. The military life means there are always challenging times, but with camaraderie, dedication, and belief, you can get through. I also saw it as an opportunity to engage with other amputees, build new friendships, and gain new experiences.” The race will see Matt and a team of 17 other veterans represent Blesma, as they attempt to ride over 3,000 miles between the USA’s Pacific and Atlantic coasts. From Los Angeles in California to Annapolis in Maryland, the racers will have to take on the Rocky and Appalachian mountain ranges, as well as the Great Plains, where temperatures can reach up to 45C. The Blesma team is made up of veterans who have experienced limb loss, the loss of use of a limb, or loss of sight. The team will have nine days to complete the challenge, where they will be pushed out of their comfort zones, both physically and mentally.
ACHIEVE
“One thing I have learnt through my rehabilitation journey is that people are there to support you and guide you,” Matt emphasises. “But, only I can make the changes and sacrifices in order for me to be who I want to be, and achieve what I want to achieve. “Whatever hardships and difficult situations life throws at you, by taking small steps and making small routine adjustments you can slowly come through these times a stronger, more positive and healthier individual,” adds Matt. Without charities such as Blesma, disabled veterans may not have the same opportunities to succeed when they transition back into civilian life. The impact the charity has on its members is evident, showcasing why their services are so important. “The specialities of services like Blesma mean there’s already a mutual understanding and a non-judgemental welcoming, which eases anxieties,” Matt concludes. “You have the reassurance that someone with experience is there to support you. Not only that, the opportunities that exist because of Blesma allow your journey to continue in a positive way, despite bumps along the road.”
Matt with his prosthetic
“
You have the reassurance that someone with experience is there to support you
“
FOR MORE INFORMATION
To find out more about the support Blesma can provide, visit www.blesma.org
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SUPPORTING SERVING AND FORMER MEMBERS OF THE RAF AND THEIR FAMILIES
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, and social and recreation activities
For more information, call 01903 213458 Care for Veterans Gifford House, Boundary Road, Worthing, West Sussex, BN11 4LJ www.careforveterans.org.uk
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Life after traumatic injury can be challenging Blesma is here for all serving and ex-Service men and women who have experienced loss of limb, use of limbs, hearing, sight or speech, either during or after Service
Get in touch to find out how we can support you and your family Tel: 020
8548 7080
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Email: membersupport@blesma.org Online: www.blesma.org
28/02/2020 15:55
enable voices
Tim Rushby-Smith
Thinking ahead Australia was a country on fire, where many faced evacuation. How can you prepare for this eventuality with a disability? With prior planning, writes our columnist, Tim Rushby-Smith
“
I
don’t know what to take!” “Just a few clothes and your toothbrush. We want to travel light.” Summer packing can be stressful, especially with kids, but this was like no packing I have ever contemplated before.
EVACUATION
Welcome to Australia 2020, a country on fire. We live in a small seaside town that has not previously been at risk. But this isn’t like any previous year; the fires are so big that they create their own weather and everything is tinder dry, so predicting the wind direction and the speed at which the fires can spread has become even more difficult. Trees that are hundreds of years old are falling, blocking many roads in the region, and cutting off potential escape
routes. The advice is to leave early if you are in any doubt. So, along with ensuring I had enough meds and catheters, I was also considering which wheelchair to take. How would you pack for an evacuation?
STRATEGY
So far, the fires have not come close enough for us to leave, but they have come within 30 kilometres, so we have an exit strategy, just in case. Across Australia thousands have been affected, including many disabled people. I recently spoke with the Disability Trust, who provide accommodation and support for people with disabilities in many of the fire-affected regions. They are liaising with the Rural Fire Service to evacuate residents ahead of the fire lines. One group had to be evacuated five times in 48 hours, as locations
previously thought to be safe came under threat. This has been very traumatic for all concerned, but especially for those who rely on familiarity and routine for their sense of well-being. Some staff members also face losing their own homes, but are still working to reassure their clients.
GRANTED
While I was confronted with just how much stuff I need to maintain a ‘normal’ life, it also shows just how much we take for granted; clean water, a reliable electricity supply, access to medicines, home deliveries (of course, for many people in the world these things are the stuff of fantasy). But this has also been a good reminder that it’s people that matter most. And watching communities come together to help everyone affected by the fires is one of the positive stories in what has been a difficult time.
“
I was also considering which wheelchair to take. How would you pack for an evacuation?
“
Beyond The Break, by Darren Longbottom and Tim Rushby-Smith is published by Ebury Press in Australia and is available internationally as an eBook
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E GE L T H AN XX TO E R D IZ DE R S AD LDE OU SH .
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You can still order DMO Custom and madeto-measure Dynamic Movement Orthoses with us, contact us today to find your nearest DMO clinician.
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27/02/2020 16:24
Pregnancy,
Disability and me
Considered one of the most natural parts of life, trying to start a family is a time of excitement, nerves and questions. But, for many disabled women living with a disability trying to conceive there are more questions than answers. What more needs to be done to support disabled women during pregnancy?
A
cross the UK, there is an estimated 1.7 million disabled parents in the UK, many living with sensory or physical disabilities. Each of those parents have one thing in common: striving to ensure their child has the best start in life to achieve all their hopes and ambitions. However, prior to raising a child there can be some stumbling blocks, from conceiving, to medial support and even attitudes of the wider community.
FALLING PREGNANT
In 2019 Rachel Tait and her partner decided that they were ready to start a family – a whirlwind of positive emotions. Even so, the couple had questions on how to move forward with a healthy pregnancy as Rachel lives with seronegative rheumatoid arthritis and chronic pain. Fortunately, Rachel had a supportive rheumatologist and strong family
The only way we’re going to break down barriers is if we actually start talking about it
network, with Rachel’s rheumatologist providing a wealth of medical information. Medical support was plentiful, but Rachel felt the emotional guidance was lacking – all the way to conceiving. “Nobody wants to talk about the fact that if you want to conceive you have to have sex, nobody talks about the fact that for some people that’s more difficult than others,” emphasises Rachel. “If you’re trying to conceive that does mean more sex, and with chronic pain that sometimes isn’t an option. Nobody talks about that at all.” In Rachel’s situation, it wasn’t until she picked up a leaflet on alternative positions – one which was not directly offered to her – that the couple could learn new ways to make the process of conceiving more comfortable. This lack of awareness is a recurring theme. Fi Anderson, who lives with muscular dystrophy and is a wheelchair user, was made to believe that because of her condition having a biological child would be impossible. Fi explains: “When I did become pregnant, all the presumptions and negativity frightened me greatly. Everyone had painted this horrific picture with no real fact or evidence. “My whole first pregnancy was plagued with this dark cloud that baby and I wouldn’t make it or I’d have to deliver baby early, and my fiancé would face raising our daughter without me.”
MEDICATION
In Fi’s circumstance, she felt the enjoyment of her first pregnancy was
lost due to worry that her child might inherit a form of muscular dystrophy and negative perceptions from medical professionals. At six weeks pregnant, Fi was advised to carry out an abortion after experiencing hyperemesis – an incredibly common symptom in pregnancy – as a doctor assumed this was due to Fi’s body not coping. “That was my first real hurdle to get them to treat me like the average pregnant mum-to-be with extreme morning sickness,” remembers Fi. “I fought to change consultants and thankfully got a good one willing to trial medications usually reserved for chemo patients to deal with their symptoms, and it worked.” Everyone has a unique experience of pregnancy, and for some women taking medication is a necessary process. However, Rachel felt the taboo of taking medication by other expectant-mothers and some medical professionals had a negative impact. Rachel says: “That can be quite hard: throughout pregnancy with the normal midwifery appointments and anti-natal groups, it’s all really taboo if you’re taking medication. You kind of don’t get a mention if you’re on medication.” Currently breastfeeding and not on medication, Rachel knows this will soon change and believes the emotional and mental health support in this instance is lacking.
EMOTION
“There will be a point where I will have to go back on medication meaning I will not be able to continue breastfeeding; there is a lot of practical and medical
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advice, but the emotional support is alongside millions of other pregnant lacking,” Rachel emphasises. “There is women with a disability, the rewards nothing to tell you about how it feels to are worth the hardships. Fi has two be taking medication during pregnancy, healthy daughters and Rachel has a son. the worry and anxiety you have, the risk The main advice when going through – even though you have to be taking it. pregnancy with a disability is to know “It is important to be as well as your own body, and speak out to possible to be the best mum you can get the right support. “Advocate for be, and how it all has an emotional yourself, and don’t be afraid to ask impact. When I have to stop for help and have honest discussions,” breastfeeding that is going to have an Rachel passionately adds. “The only way emotional impact on me… Everything we’re going to break down barriers is if is so catered to women having normal, we actually start talking about it.” healthy pregnancies: I wish I had known And Fi agrees: “I had to learn to about the lack of support and I would advocate for myself and for my rights as have tried to prepare myself a disabled parent… Don’t feel more for that.” alone in your journey.” Going HAVE into her second pregnancy, Fi YOUR SAY learned to enjoy the experience REWARDS Share you and the excitement that comes Despite the challenges experiences of with pregnancy. faced by Rachel and Fi, disability and pregnancy with us on Twitter @EnableMagazine
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“I learnt not to let the opinion of medical experts take away the joy of pregnancy and motherhood. You know your body better than anyone. If you believe your body has what it takes, that’s what matters – use that belief to get you through pregnancy and beyond,” says Fi. It is evident attitudes around disability and pregnancy need to change, in order to provide women living with a disability the best experience during pregnancy.
FOR MORE INFORMATION
Advice, support and lived experience is available from Scope (www.scope.org.uk), Muscular Dystrophy UK (www.musculardystrophyuk.org), and Enabled2Parent (enabled2parent.org).
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27/02/2020 16:42
enable health
The Mission to stop MS
Research is continually underway to help slow, stop or reverse the effects of multiple sclerosis for people living with the condition. Here, the MS Society speaks to Enable about the quest to Stop MS and the innovative research they believe will make it possible
I
t is estimated that more than 130,000 people in the UK have multiple sclerosis (MS), a condition that affects the brain and spinal cord and makes it harder to do everyday things, like walk, talk, eat and think. With nearly 7,000 people newly diagnosed each year, finding effective treatments for MS is paramount for charities like the MS Society. “As an organisation one of our priorities is to increase availability of treatments that slow, stop and reverse the effects of MS,” explains Dr Susan Kohlhaas, executive director of research and external affairs at the MS Society.
BREAKTHROUGH
Currently, it can take around 17 years for a new drug to be created, tested, approved and made available to patients, but this wait is too long to make a difference for people who are being diagnosed with MS today.
“People with MS told us what they avenues are being explored, including want us to do,” explains Susan. “It was using repurposed drugs which are often really finding ways to stop MS and stop available for other conditions. the progression of the disease, another There are multiple treatments for is preventing MS. the symptoms of MS available on the “We’re doing work on understanding NHS now, but the condition effects what the risk factors are, how they each person differently and symptoms interplay, and how we evaluate are varied. Treatment isn’t one size fits strategies to prevent MS.” all and research breakthroughs Through the charity’s Stop are vital to ensuring there is MS campaign and strategic treatment for everyone. investments in research, 7,000 people are the MS Society hope to TECHNOLOGY newly diagnosed speed up this process. Technology has become with the condition “We’re primed to an essential resource unlock a breakthrough in research, opening each year in treatments and care,” doors to treatments that reveals Susan. “What we’re haven’t been possible trying to do through our Stop before. In 2019 the MS Society MS appeal is to speed that up committed to investing £1.3million as much as possible, the investment to fund 13 new technology projects, all in research has already identified a pushing the boundaries of MS research. number of molecules or drugs ready to “This year we have some amazing be tested in clinical trials.” projects,” enthuses Susan. “We’ve got Through this research all possible a really exciting one in Sheffield that
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is looking at using robotic suits to help people with MS with mobility issues, helping people to stay physically active, it’s really exciting. “It’s fantastic to be able to fund and work with the future of technology and what it might be like for people with MS.” A number of symptoms of MS can be helped by existing technology and new developments, and technology can often speed up how quickly these outcomes are achieved. “Other things technology can do is it can help people day to day,” explains Susan. “There’s all sorts of different apps and technology that can help people in the here and now that don’t need a large-scale research programme.” Data and technology have become a large area of focus for the MS Society, with planning underway for the first data and technology summit later this year. The summit will explore the most exciting things happening in the industry right now and how they can be used to benefit the MS community. As part of the mission to Stop MS, the MS Society have made the charity’s largest single investment in an initiative to build a large-scale clinical trial platform. “We know we need new treatments ASAP so we are bringing the research community together to help us tackle the issue through clinical trial work,” explains Susan. “It will help us to streamline clinical trials to make them faster, and smarter, to ensure we are using the data we have from clinical trials to the best of our ability.” Susan believes that this platform could transform MS treatment. Working with researchers from across the world, the project aims to speed up the process for discovering new treatments. The platform could make it possible to test multiple drugs at the same time without having to stop and start between trials. “Beyond that we are going to be continuing to invest in high quality research that helps address our priorities and understanding MS,” adds Susan.
GET INVOLVED
Without the input and time of people
with MS, this research wouldn’t be possible, Susan says: “This is the most exciting time I’ve ever seen in MS research, and we can see a future where nobody needs to worry about MS getting worse. But we can only do it together, and there are lots of ways people with MS can get involved..” People with MS, their loved ones and the wider community can help by volunteering and raising money for research, or people with MS can take part in clinical trials. “One of the key things they can do is join the UK MS Register,” explains Susan. “The register is a great gateway to promoting clinical trials and research, we’re also encouraging people to join #TeamStopMS – this can involve anything from spreading the word on social media to raising vital funds.” With MS Awareness Week taking place from 20 to 26 April, the momentum behind this research is only growing. Providing a voice for the MS community while giving them a sense of belonging, MS Awareness Week will work to raise awareness and crucial funds to continue life-saving research to stop MS.
“
We are going to be continuing to invest in high quality research that helps address our priorities and understanding MS
“
INVESTMENT
FOR MORE INFORMATION
Discover the latest MS research from the MS Society (www.mssociety.org.uk) or the UK MS Register at www.ukmsregister.org
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333640061 Assistive Technologies Ad October 2019 346x246mm AW.indd 1
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WIN
A FAMILY BREAK AT WIGWAM HOLIDAYS BALL HALL FARM
You could be heading for an accessible glamping break at Wigwam Holidays Ball Hall Farm for two adults and three children
E
scape for a family holiday like no other at a fully accessible Wigwam Lodge on Ball Hall Farm. Just a short journey away from the historic centre of York, Ball Hall Farm is nestled in the Yorkshire countryside with plenty to do for adults and children alike. Sleeping up to five people, all of the deluxe cabins overlook a stunning wildlife lake and are surrounded by native woodland. Each fully accessible Wigwam Lodge is equipped with a wide access wet room and kitchenette, with a dedicated fire pit or BBQ and picnic table outside to cook and relax in the evenings. All accessible Lodges feature
a gentle sloping ramp up to the decking area with level access into the cabin and bathroom. The kitchenettes feature a shallow sink with moveable lower kitchen cabinets for access and electric charging points. See what wildlife you can spot during your stay with barn owls, hares, deer, red kites and swans constantly spotted in the surrounding woodland which is perfect for dog walking or den building. Take a walk along Pocklington canal or visit the nearby Pocklington market town before heading into York to see the York Castle Museum, Jorvik Viking Centre or indulge in a treat at Yorks Chocolate Story.
HOW TO ENTER
To be in with a chance of winning this fantastic prize, simply send us your name, address, daytime telephone number and where you picked up your copy of Enable to competitions@dcpublishing.co.uk quoting Ball Hall Farm or enter online at www.enablemagazine.co.uk/ BallHallFarm – all entries must be received by Monday 27 April, good luck! TERMS AND CONDITIONS: All entries must be received by Monday 27 April. Winner is entitled to a twonight break at Wigwam Holidays Ball Hall Farm between March 2020 and 30 December 2020 for up to two adults and three children. Prize is subject to availability. Transport, food and other additional costs not included. Booking subject to availability, prize is non-transferable, non-refundable and there is no cash alternative and cannot be sold to another party. One entry per household. The publisher’s decision is final. If you do not wish to be contacted by Wigwam Holidays Ball Hall Farm, please write OPT OUT on your entry.
Immerse yourself in Wigwam Holidays Ball Hall Farm by visiting www.glampinginyork.co.uk or call 01759 319 089. 36 enablemagazine.co.uk
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27/02/2020 16:27
enable
WORLD DOWN SYNDROME DAY
CELEBRATING
Diversity
D
own’s syndrome is a condition caused by the presence of three copies of the genes in chromosome 21, rather than two. For this reason, World Down Syndrome Day (WDSD) is celebrated on 21 March – the 21st day of the third month – to demonstrate the uniqueness of that 21st chromosome that causes the condition.
INDEPENDENT
The Down’s Syndrome Association (DSA) is just one charity supporting people with the condition and their families, to live independent lives, and meet others. Through sport, art, drama and various clubs, the charity offers the chance to get active and make new
I think to celebrate is a really good thing. It helps to make people like me feel more included
Vinay at work
Every year, World Down Syndrome Day takes place to raise awareness about Down’s syndrome, and promote opportunities for people living with the condition. This year’s theme is We Decide – how will you be celebrating?
friends, as well as opportunities for longterm employment. Vinay has Down’s syndrome and works for the DSA’s information team. He has worked for the charity for over 20 years and enjoys taking part in the DSActive summer camps, as well as raising awareness of Down’s syndrome. “It is good for me to be a part of [the charity], and interesting for me to give a voice to people with Down’s syndrome,” enthuses Vinay. “We talked about human rights at a conference in January and I really enjoyed talking about that and making notes. I like giving presentations and giving my views as someone with Down’s syndrome.”
SOCIAL
PIC: © LAUREN SHEARS
spotlight
The DSActive summer camps give Vinay and others the chance to get active and socialise, whilst ensuring that the opportunity to take part in adrenalinefuelled sports and fun physical activity is accessible to everyone. “The summer camp is really good for people with Down’s syndrome,” Vinay continues. “They have games and interesting things like tennis, hockey and rounders. I did the javelin for the first time, I haven’t done it before and it was
really fun. I’d never been to a summer camp before so it was interesting for me. For myself, as a person with Down’s syndrome, I was really happy to show my skills.”
CELEBRATE
The theme of WDSD this year is We Decide, which supports the effective and meaningful participation of people with Down’s syndrome as a key human right. It also celebrates the empowerment of people with Down’s syndrome to have a voice and a say in decision making surrounding their own lives. “I think to celebrate is a really good thing,” enthuses Vinay. “It helps to make people like me feel more included. The DSA has lots of flyers and posters and I like showing everyone people like me. I think it is important for people like me to make our own choices. I like making my own decisions.” FOR MORE INFORMATION
To find out more about WDSD, visit www.worlddownsyndromeday2.org, or to discover how the DSA can support you, go to www.downs-syndrome.org.uk
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Start a new chapter Calibre Audio Library brings the joy and pleasure of audiobooks for anyone who is print disabled To join, call us on 01296 432 339 or visit www.calibre.org.uk Registered charity no. 286614
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28/02/2020 15:47
Let’s get physical Maintaining a healthy lifestyle is essential for mental and physical health, but what if you feel disability is a barrier? As more personal trainers become disability aware, the time to get active is now
P
hysical activity is key to managing weight and living a healthy life, but for people with a physical or learning disability it can be a difficult topic to approach. It is estimated that 31 per cent of men and 45 per cent of women with a learning disability are classed as obese. Excess weight can mean a greater risk of health problems like heart disease and diabetes, and can affect mobility. Expertise from healthcare professionals is key to making physical activity accessible. This is something that personal trainer Dom Thorpe (www.dt-training.co.uk) learnt after
his mum was diagnosed with MS, he says: “She got progressively worse and I didn’t even know there was fitness for disabled people, it was an alien concept to me.” After completing a course on physical activity for people with a disability, Dom knew it was a path he should pursue. Tom Green, the managing director of TG Fitness (www.tgfitness.com), had a similar experience after learning about the barriers to physical activity faced by people with a disability. His concern lay with the lack of fitness professionals with an understanding of the area.
Learning that you actually still have some control over what you can do can really change your perspective and outlook on life
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was daunted by the idea of exercising and attending a gym. “I wanted to be healthier and lose weight but I didn’t have the motivation to do it on my own,” recalls Charlie. “I was nervous because I was overweight and felt a bit rubbish about it, I did a bit of swimming when I was younger but didn’t do anything for a number of years before starting with Tom.” Barriers including confidence can prove difficult to overcome and obesity isn’t the only concern when it comes to weight and disability. Being underweight is just as dangerous and is particularly of concern for people with a disability that affects their ability to eat or swallow. Even with an incentive to become more physically active, the gym environment itself can be inaccessible, especially for people with sensory disabilities. “Going into a gym there’s heavy weights clanging on the machines and free weights being dropped on to the floor,” reveals Tom. “There’s often little space between equipment so you are always exercising very close to someone else, it’s a tough environment to be in.” But, with the right help, you’re sure to thrive.
EXPERTISE
BARRIERS
The key to losing or gaining weight with a disability is healthy eating and exercise, but the task of achieving this comes with additional complexities and barriers. Without appropriate knowledge and support it can seem like an impossible task. “It’s access to someone with an understanding of their challenges and the basic exercise prescription for different individuals, also health inequalities,” explains Tom. “Then there’s other barriers like physical hurdles.” Before he started training with Tom, Charlie, who has cerebral palsy,
Having the correct information tailored to your condition and what you would like to achieve is key to successfully integrating more physical activity into your routine. This specialist input will avoid injury or feeling like you aren’t getting the results you want. “The first port of call I would say is to reach out to someone,” advises Tom. “There are also a lot of videos online for things like seated exercises that you’ll be able to do within your own home or the environment where you feel most comfortable.” Speaking to your GP at an annual health check or reaching out to your local gym to see what specialist support they provide is a great starting point. Similarly, if you feel your finances may be an additional hurdle to getting active, your GP can signpost you to free services. “A lot of disability charities out there
are actively trying to push physical exercise and a healthy lifestyle as a way to manage your condition,” explains Dom. “If people reach out to their favourite charities, they can find access to various courses or videos.”
IMPORTANCE
Understanding the importance of getting active is the first step. Dom emphasises: “What I try and get everyone to understand is just because you’ve been labelled as disabled it doesn’t mean you can’t become more able with the right exercises and nutrition.” Along with losing or gaining weight, physical activity and building strength can help with everyday tasks, improving quality of life and your mental wellbeing. “To be able to do basic things like getting out of a chair is a huge benefit to quality of life,” stresses Tom. This sentiment is echoed by Dom, he adds: “There is day to day functional aspects of getting active: if you are stronger or have better balance or you are more mobile, then you can achieve more.” Since introducing more tailored physical activity into his routine, Charlie has seen this improvement in his own day to day life. “I’m more confident and exercising more often independently,” explains Charlie. “My locomotor skills have also improved.” Exercising after a new diagnosis or getting active for the first time with a physical disability, with help you are sure to thrive. “Learning that you actually still have some control over what you can do can really change your perspective and outlook on life,” emphasises Dom If you plan to get more active as we enter spring, seek advice as early as possible and start small – you will be surprised by what you can achieve by integrating small changes into your routine.
FOR MORE INFORMATION
Search for accessible gyms near you at www.activityalliance.org.uk
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enable travel
Come fly with me Checking into your dream destination has never been easier, with more airports and airlines than ever before understanding disabled passengers’ needs. It’s time to make 2020 the year that you get jetset
I
n 2018, more than half of all British people took to the skies for business, family holidays and romantic getaways. However, only 38 per cent of disabled people in the UK travelled by air in the same year, highlighting the need for further improved accessibility across the aviation industry. There’s still a long way to go before air travel is fully accessible for everyone’s needs, but with airports and airlines ensuring inclusion is at the
Christina, Kai and ABM members
forefront of their policies, there’s never been a better time to travel.
AIRPORTS
Increasingly, airports and airlines are improving their practices around disability. Liverpool John Lennon Airport (LPL) is aiming to become north England’s most accessible airport. “We understand the challenges some people, especially those with disability, face when travelling through airports and how the idea of doing this can discourage or completely put people off from flying,” says Christina Smith, customer service and accessibility executive at LPL. “As an airport we’re passionate about being accessible to all, and we believe travel should be inclusive.” At LPL, accessibility is at the forefront of all operations. The airport works closely with various disability organisations, including Stomawise UK, Guide Dogs, Autism Together and Dementia Access Alliance, to ensure both visible and invisible disabilities are catered for throughout the airport. “We continuously work with people, partners, disability groups
and passengers to gain feedback on what we do, as well as partake in awareness training and other forms of information sharing,” Christina continues. “Talking and cooperating with groups is extremely helpful as we’re able to get first-hand feedback on what we need to improve in as an airport.” LPL also offers the opportunity to visit the airport ahead of your flight, so you can familiarise yourself with the surroundings, and feel comfortable ahead of your holiday – with opportunities publicised on their social media channels and website. With airports around the UK improving their accessibility, disabled flyers can look forward to a seamless journey through the airport, focusing instead on building excitement ahead of your trip.
FLYING
Once you’re through the airport, it can be daunting to board your plane, particularly if you’re concerned about how your needs will be met. But there’s support available to ensure you can take off without a hitch. Disability charity Queen Elizabeth’s enablemagazine.co.uk
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COMFORT
“It can be very hard to get inside an aircraft cabin,” Graham continues. “It can create a huge fear around flying because you’re not able to see what it’s like until you’ve purchased your flight. QEF Tryb4uFly gives the opportunity to experience getting onto an aircraft and being transferred, then being able to test different methods of support to remain comfortable for the duration of the flight.” The QEF Tryb4uFly assessments are undertaken with an occupational therapist and can be invaluable preparation to ensure your flight experience goes as smoothly as
“Travel is life-
changing and should be accessible to all
“
Foundation for Disabled People (QEF) work closely with the aviation industry and run their Accessible Aviation service, providing disabled travellers with unique videos showing every step of air travel, alongside downloadable information. “We look at disabled people’s access to flight,” explains Graham Race, at QEF. “We’re examining the practical challenges as well as access to information, building confidence and ways we can support people to access what is a really amazing form of transport.” As part of their services, the charity offers QEF Tryb4uFly – a personalised assessment inside a mock aircraft cabin. Offering a trial run of boarding an aircraft and transferring to a seat, as well as seating support options. It can help put your mind at ease about travelling by plane.
possible. One of the other key ways to prepare ahead of your flight is to contact your airline and let them know of any requirements you have, so they can provide you with the best support on the day. “Your airline will have questions, and they just want to make sure that you’re fit to fly and that you have a good and comfortable flight,” advises Graham. “Once you’ve booked your flight, it’s important you request the assistance you need at that stage. And then, on the day, don’t be afraid to ask for assistance if you need it.”
CONFIDENCE
“Travel is life-changing and should be accessible to all,” Christina enthuses. “Creating confidence to travel for disabled people as well as their loved ones is essential to make travelling not seem like a burden, but rather a day-to-day activity and a reality for all.” There are more opportunities than ever before to enjoy a fully accessible flying experience to where ever you wish to travel in the world. The only question is, where will you go next?
EASY TRAVELLING Though air travel can come with challenges, more products and services become available every day, making it more accessible. Launched in 2018 by Able Move, the easyTravelseat is the first in-situ transfer device that ensures safety, dignity and comfort when moving on and off a plane. Available in four sizes, the easyTravelseat sits inside your wheelchair and is easily lifted out by manual handlers, moving you seamlessly from your wheelchair into the plane. The seat includes eight handles for manual lifting or hoist straps, a seating compartment for various types of cushioning, a handy travel pouch to store all of your travel necessities and best of all, it’s discreet. Available to buy from £299.99, or soon you will be able to rent from £38.00 plus postage per week. With easyTravelseat, the sky’s no limit. To find out how the easyTravelseat can make air travel more accessible for you, visit www.easyTravelseat.com
FOR MORE INFORMATION
Further accessible air travel information is available from Liverpool John Lennon Airport (www.liverpoolairport.com), QEF (www.qef.org.uk), and the Civil Aviation Authority (www.caa.co.uk).
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Do you have reduced mobility or a disability? Are you recovering from a stroke or an operation? QEF’s expert services can support you. From mobility equipment hire to driving assessments, bespoke children’s equipment to neuro rehabilitation and specialist residential care. Our friendly team of experts can support you to live your life to the full.
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27/02/2020 16:44
enable life
thediary 17-18 MARCH NAIDEX
NEC, Birmingham www.naidex.co.uk Dedicated to the care and lifestyle of disabled people, Naidex is the largest trade, professional and public event of its kind in Europe. Showcasing the latest innovations in disability care, this year’s focus is aspiring for a better future of independent living. With a mobility test track, wellbeing zone, live sports arena and more, there’s something for everyone at the exhibition. Taking place over two days, Naidex is an essential, free day out for healthcare professionals, disabled people and their loved ones, and those who work with disability. Don’t forget to say hello to the Enable team at stand N874.
What’s going on around the country this March and April
MARCH 21 MARCH WHEEL CHAIR MOTO-CROSS AND ADAPTIVE SKATE JAM 2020
Graystone Action Sports, Salford www.activityalliance.org.uk
Experience a new world of disability sport at the 2020 UK Wheel Chair Motor-Cross (WCMX) and Adaptive Skate Jam. Hosted by women’s WCMX world champion Lily Rice, the event will see like-minded people get together to experience adaptive skating. Participants will need to bring their own safety equipment and wheelchair or skateboard, but spotters and pushers will be on hand to assist first time riders to the sport and seasoned professionals.
APRIL 4 APRIL SPECTRUM NIGHT WALKS
London, Glasgow, Manchester www.autism.org.uk
22 APRIL OTAC LEEDS
Weetwood Hall Estate and Conference Centre, Leeds www.otac.org.uk The Occupational Therapy Adaptation Conference and Exhibition (OTAC) Leeds will kick off a calendar of eight OTAC events in 2020. The free event will provide an opportunity to see the latest adaptation and equipment guidance for occupational therapists (OTs) in the UK. Ensuring OTs keep up with the latest developments in the sector, the exhibition’s seminar topics include adaptations without delay and bathing and sleep – joining the dots.
Support the National Autistic Society in their biggest walking fundraising event of the year this April. The National Autistic Society Spectrum Night Walks take place every year to raise money for the charity and awareness of what it’s like to be autistic. Taking place simultaneously in London, Glasgow and Manchester, participants have the choice of walking a 5k, 10k or 15k route in each location. Anyone can take part including autistic people, their families and friends, or members of the public who would like to fundraise.
22 APRIL DISABILITY IN 2020: TIME FOR BUSINESS
The British Library, London www.businessdisabilityforum.org.uk
For their next annual conference Business Disability Forum will be looking at where they began and where they are now, and what the future holds for disability and business. This year’s conference will see a range of speakers and panellists discussing and debating topics like: is the Equality Act 2010 still fit for 2020; documenting disability down the decades; the mental health challenges of the last decade; and how do we put disability at the top of the business agenda.
If you have any events coming up in May and June 2020 email us at diary@enablemagazine.co.uk with the details for inclusion in next issue’s diary 46 enablemagazine.co.uk
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enable travel
Accessible
PUBLIC
TRANSPORT Public transport is a useful tool, helping people across the UK get from A to B with ease. With new laws and features coming into place making public transport more accessible, how will you choose to travel?
F
rom discounts and new technology, to knowing your rights when you commute, public transport is one of the most accessible ways for disabled passengers to travel.
ELECTRIC BUSES New regulations for 2021 state that all ‘quiet running’ vehicles, including London’s electric buses, must emit a noise to ensure pedestrians – and in particular, blind and partially sighted people – will be able to travel by foot more safely. Speakers attached to the front of the buses emit an artificial sound to make road users aware it’s moving. The bus will make the noise when travelling under 12 miles per hour (mph), when reversing and when stationary; when travelling over 12mph, it makes enough noise that the sound is unnecessary. The sound has been created in collaboration with Guide Dogs for the Blind and other accessibility groups, to ensure it meets the needs of disabled pedestrians. Though it’s currently only being trialled on one London route, you’ll soon be able to hear the noise around the country, too.
the country’s rail networks. If you’re travelling with another adult, they can claim a third off their fare, too. The railcard can be used on a variety of ticket types, including advance, anytime and off-peak tickets, as well as the sleeper train. If you would like to book passenger assist for your travels, you can do so on the Disabled Persons Railcard website (www.disabledpersons-railcard.co.uk), or by contacting the train company you’re travelling with ahead of your journey.
TRAINS
TAXIS
When travelling by public transport, there are various options to help you get to where you need to be, for a cheaper price. The Disabled Persons Railcard entitles holders to a third off train fares across
If you find it difficult to use public transport for accessibility reasons, taxis can be a great option, and it doesn’t have to be as expensive as it sounds. In many areas, usually larger cities, taxis must be wheelchair accessible, and
in London, all black cabs are suitable for wheelchair users; many newer black cabs are also fitted with an induction loop for hearing aid users. All taxis must accept assistance dogs in their car, unless the driver has an exemption certificate because of a medical condition. If you are refused entry to a taxi because you’re travelling with an assistance dog – which is against your legal rights – you should report this to the taxi licensing office at your local council. Some councils offer free taxi vouchers to people who cannot use public transport because it isn’t accessible for their needs. You can find out if you’re eligible by contacting your local council. There are many new initiatives and improvements on current public transport to ensure that you can travel with accessibly, and with ease.
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self-catering log cabins set in the spectacular Derbyshire countryside • mobile hoist and specialist equipment • roll in wet room shower with grab rail • explore local trails on our Boma 7 off-road wheelchair • Closomat toilet
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St Ouen, Jersey JE3 2AA Tel: 01534 481683 Email: contact@maisondeslandes.co.uk Website: www.maisondeslandes.co.uk
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ENCOURAGING
Independence
Everyone wants autonomy over their own life and decisions, and with the help of supported living the doors to independence are opened to many people in the disabled community. How could supported living work for you?
Liz
is empowering the individual to live the life they desire, with the assistance they want and need. Anything is possible if you have the right care and support.”
POSSIBILITIES
There are many reasons why you might be considering the move into supported housing, Emma says: “Craving more independence and wanting to achieve their own goals I imagine would be up the top of the list. “Living in a supported living scheme may open the door to new opportunities previously thought impossible and spending time with likeminded people can be empowering.” Liz Roberts is a resident with Sanctuary Support Living, making the move when her mother was getting older and couldn’t offer her as much help anymore. “My living experience with Sanctuary is wonderful,” emphasises Liz. “It was my choice to move in here with a carer – this is a place I wanted to be in.” Since moving, Liz has experienced an increase in her independence with new opportunities available to her. “Each person in the home is allowed to make their own choices, they never tell you what you can and can’t do,” stresses Liz. “They enable me to go out, for example to the pub, to do the things that I want to do, see friends: the whole living experience is wonderful.”
SOCIAL
Every week Liz is able to get together with other residents and friends for meals and events, allowing her to socialise more than she was able to before. Her experience with Sanctuary is similar to many other residents
PICS: © SANCTUARY GROUP
S
upported housing can come in many different forms, but it is usually a place you can call your own, where you have a secure tenancy and the support or care you need. Providers like Sanctuary Supported Living offer a range of different housing options, including supported housing with support – with the addition of personalised care at some services – and residential and nursing homes. Emma Warren is an area service manager for Sanctuary Supported Living and understands that the decision to move into supported housing is different for everyone. At Sanctuary, the team work with different client groups including homeless families and individuals, people with mental health needs, physical and/or learning disabilities, young people and others with a range of complex needs. They understand the importance of an individualised approach to support, Emma explains: “Any supported living
who have been able to improve their day to day life with the knowledge that support is there if it is required. One resident previously spent all day in a recliner chair, but was assisted with sourcing a wheelchair, Emma recalls: “It meant she was able to self-propel with her feet, and now she moves freely around the building popping into communal areas to see her friends, and feels more self-confident as she is able to be much more independent.” “Living in supported housing can be empowering in many ways, and can open up an individual’s rights as a citizen in their community,” continues Emma. “This might include accessing funding, local resources, shopping for things such as food or expanding life skills such as budgeting, rather than relying on other sources.”
CHOICE
Along with the social benefits of supported living, it also offers the
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enable
spotlight
Anything is possible if you have the right care and support
opportunity to tailor your support. “Care may include washing and dressing, eating and drinking, or support with medication; as the word ‘supported’ suggests, the team would support the individual to be as independent and empowered as possible,” explains Emma. “The opportunities are endless, but it all comes down to personal preference and how much or little the individual wants to do.” Sanctuary’s supported living schemes work in collaboration with the individual and anyone else they would like involved to create a person-centred care and support plan. This includes any specific goals or achievements. “It could be anything from being able to wash the dishes with our adaptable kitchens, to having the confidence in the support staff to book and go on holiday abroad for the first time,” suggests Emma. “This plan is then reviewed on a regular basis to see what
needs tweaking to suit the person more, or what new goals they would like to work towards.” The plan is also tailored into the format that is best for the client. This could mean producing the plan in large print, with pictures or audio, or creating an easy read version. For Liz, the care and support plan has been especially helpful. “It has enabled me to live my life more fully with the support and care I receive,” enthuses Liz. “I go on holiday now and see my friends, they help me to carry my life on.”
QUESTIONS
Research into the different types of supported living and what is best for you can help diminish any negative pre-conceptions or concerns you have, Liz remembers: “I thought that it would be loud and people would take away my free will, but no, they definitely helped it; I would say go for it.”
Before committing to a particular provider or supported living scheme, it is important to ask questions to ensure it will suit your individual needs. “Speak to a tenant who already lives at the scheme,” Emma advises. “They know what it’s like as it’s their home. Don’t be scared to ask challenging questions as it’s your life and you need to feel comfortable and safe.” Supported living through a provider like Sanctuary could help you regain your independence and live a happier life, but finding the right scheme for you is essential to ensure you find the right accommodation to meet your needs. Research, visits and questions will ensure you choose a new home that is perfect for you. FOR MORE INFORMATION
Learn more about how Sanctuary Supported Living could help you at, www.sanctuary-supported-living.co.uk
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At Sanctuary Supported Living we provide supported housing, move-on accommodation, CQC registered services, including residential care and nursing homes, and floating support. We specialise in services for young people, people with physical and learning disabilities, people with mental health needs and acquired brain injuries, and homeless families and individuals. Our personalised care and support services enable people to identify their goals and aspirations, setting them on their pathway to independence.
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enable voices
Disability and politics in 2020 On 12 December 2019 people across the UK cast their vote; on 13 February 2020, the Prime Minister reshuffled the government. As the dust settles, Justin Tomlinson, Minister for Disabled People, Health and Work discusses what the new government has planned for the disabled community
G
oing into 2020 and with a new political future, what does the UK Government have planned to improve the lives and opportunities of disabled people? First of all, I’d like to say I’m thrilled to have been asked to continue in my role as Minister for Disabled People, Health and Work. It’s a very exciting time to be in this role given the bold new initiatives this government has planned for 2020. There are two major pieces of work which will involve working across Whitehall to embed a focus on disability across all government departments. We’ll be working with the Cabinet Office to publish a National Strategy
for Disabled People. This is a landmark and hugely significant piece of work that will focus on removing barriers that disabled people face in everyday life. We will also publish a Green Paper exploring how the welfare system can better meet the needs of claimants with disabilities and health conditions, building a system that people trust, and enable them to live independently and move into work where possible. We have already held a series of workshops across the country where local disability organisations and disabled people have been sharing their experiences of DWP (Department for Work and Pensions) services and what they would like to see change.
With amendments being made to the benefits system, what should people be aware of to ensure they are receiving all entitled benefits? There’s a wealth of advice and guidance out there for disabled people to make sure they’re accessing all of the benefits they are entitled to. This ranges from schemes like Access to Work which provides grants of up to £59,200 annually to help pay for additional support that they may need in the workplace. As well as Disability Confident which encourages employers to think differently about disability and to act to improve how they attract, recruit and retain disabled employees. Supporting disabled people is about
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There were some significant steps forward last year in terms of getting more disabled people into paid employment. How are you working to make sure this positive movement increases? As you say, we have made significant steps forward in recent years. In particular, we have made great progress with the commitment we made just a few years ago to getting an extra one million disabled people in work in the decade up to 2027. I can’t stress enough how important some of the existing schemes – like
“
Changing attitudes towards the employment of disabled people, something which I am deeply passionate about
“
more than just providing financial support to those who need it most, it’s about tackling the barriers they face wherever they are in society. For people who have just fallen out of work, there are dedicated pages to help them make a claim for Universal Credit, and Citizens Advice (www. citizensadvice.org.uk) offers dedicated Help to Claim support, which offers free, independent, confidential and impartial advice for people making a claim. Finally, anyone who is already in touch with Jobcentre Plus should speak to their Work Coach if they are not sure whether they may be eligible for any benefits.
the Work and Health Programme and Access to Work – are in continuing to help more people realise their working ambitions. But also key to this is changing attitudes towards the employment of disabled people, something which I am deeply passionate about, and helping employers recognise the immense talent, skills and enthusiasm that disabled people can bring to the workplace. Already this year, I’ve seen first-hand the benefits this can bring during a visit to a chocolate store in Cambridge that was founded with the sole purpose of creating jobs for autistic people,
and during a visit to the Premier Inn’s Tiny Hotel in Coventry where disabled people are trained for work in the hospitality sector. Within this issue of the magazine we are looking at accessible apprenticeships (page 78). What, if any, plans are in place to roll out more accessible apprenticeships? We know that there can be additional challenges for those with disabilities to access employment, so we have put extra support in place for apprenticeships. While most of this is organised by my colleagues at the Department for Education, here at the DWP, for support whilst working, apprentices are able to apply for Access to Work funding, as well as using their Access to Work Mental Health Support Service for Apprentices if they are experiencing mental health difficulties. For our disabled readers, what advice do you have to highlight the work being done by the UK Government with their needs in mind? With this year’s Paralympic Games fast approaching, it’s a timely reminder of the importance of showing the next generation of Paralympians, that disabled people can pursue their dreams without barriers. This aspiration will be at the heart of our national strategy for disabled people and will build on vital work that is already under way. I want to ensure that everyone has equal access to opportunities and that disabled people are able to achieve their potential. At the heart of this is our ability to make real, practical changes that focus on the issues that most affect disabled people. Finally, how can we all work together to provide an accessible and inclusive society for the disabled community? I believe tolerance and understanding is key to creating an inclusive society. The UK has some of the strongest equalities’ legislation in the world and we are recognised as a world leader in disability rights and equality. We will continue to make sure that these rights are protected. FOR MORE INFORMATION
The UK Government website (www.gov.uk) has a breadth of information available on benefits, Access to Work, and your rights under the Equality Act 2010.
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enable creative
FIVE MINUTES WITH
Mat Fraser
From a traumatic audition aged 13 to being cast in one of the biggest television series in America, actor and musician Mat Fraser is testament that disability isn’t a hindrance when it comes to raw talent. Mat sits down with Lorne Gillies to chat the future of disability in the media
T
PIC: © BBC PICTURES
hroughout your career, working in film and theatre, what would you say is the difference between representation in both platforms? Theatre takes a lot more risks than screen. The change initially comes from the smaller theatre companies, then it goes to a bigger stage or smaller screen productions and then finally national theatres, Broadway and West End. Without those independent theatre companies taking those risks initially, change isn’t going to happen. In your opinion, what more needs to be done to celebrate the talents of disabled actors in the media? Employ disabled actors in regular parts that don’t necessarily say ‘this part is for a disabled person.’ Just employ disabled actors. You have to give people a break or they won’t get better. Plus, commission a disabled writer’s play that will, in some way, speak about disability with an authority that is lacking when non-disabled writers try to portray disability. The rest will just take care of itself. We need to see disability for what it is and dismantle it together.
In the next five years, what would you like to see the industry do to promote disabled talent? I would like to see the training of
“
Is it important for us to still be having these conversations? Yes, we need a relentless onslaught never giving up until equality is achieved– we won’t allow it. And, the best thing is, neither will a lot of nondisabled people. We all want disabled people to play disabled characters; we all want disabled people to play out the roles that reflect what we see and know. No matter if it is an easy subject, hard, depressing or safe: it just needs to reflect reality.
“
We need to see disability for what it is and dismantle it together
more disabled writers, knowing that, really, the good stuff comes from a disabled voice if it is about disability. Mentoring, partnering, encouraging should be happening. And, entry level actors should be put in soaps or less demanding roles to train up so in 10 years-time they can play the lead. I would be really depressed if this hasn’t happened in the next five years. Finally, what advice do you have for readers aspiring to act? If anyone reading this isn’t going to auditions because of they think their disability will hold them back, I have to
say to you: you’re wrong, your disability will not hold you back. Me and my lot have done all the footwork, we need you to push hard from behind. Frankly, I want to be run over by a young person who sees what I’ve got and wants more and drive over me with their offterrain wheelchair and onto the next opportunity because I’m too old world.
FOR MORE INFORMATION
Don’t miss: Mat is currently working on a series of monologues created and curated for the BBC, set to be released in June or September of 2020.
Read our extended interview with Mat on the website, www.enablemagazine.co.uk 56 enablemagazine.co.uk
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enable life
Every day, new advances are made in technology, making life a little easier and more accessible. We’re spotlighting some of the latest, most innovative technology making waves in the disabled community
TRANSFORMATIONAL
TECHNOLOGY T
echnology has transformed our world in recent years, changing the way we live on a daily basis. From smart phones and social media, to virtual reality and artificial intelligence, we’re truly living in the digital age. Advances in technology have meant daily tasks and activities are made easier for people with a range of disabilities. But, what could you be utilising, and what should you be looking out for in the future?
VIRTUAL REALITY
Virtual reality (VR) can be a powerful tool in many instances, not least in working with dementia and Alzheimer’s patients. VR gives those living with dementia and Alzheimer’s the opportunity to immerse themselves in places, situations and memories from their past that may be comforting or bring back good memories. And, taking part in VR doesn’t have to be expensive or complicated. LookBack VR (www.virtue.io/lookback) is an app for people living with dementia and Alzheimer’s that helps relive positive memories. Viewers can immerse themselves in a memory through pictures or videos uploaded to the app, such as a family home or a favourite spot, which can contribute to improved mental wellbeing.
ARTIFICIAL INTELLIGENCE Artificial intelligence (AI) might sound high-tech, but it’s becoming increasingly common in households across the country, and can be an extremely useful tool for disabled people. Amazon’s Alexa and Google Home are virtual assistants that use AI to function. Through simple commands, the products can start phone calls, send messages, play music, and control home appliances, as well as answer questions: all without
COMFORT
Leading the way in advanced technology wheelchairs is the Scewo wheelchair (www.scewo.ch/en): a chair that can descend and climb stairs, elevate the seat by almost a metre, and recline for comfort and relaxation, no matter where you are. New to the market, the Scewo will be available to purchase at the
the push of a button. These functions can be extremely useful, cutting out the need to manually carry out tasks which can be fiddly, challenging, or even impossible. With the opportunity to set alarms, it can also be a valuable tool to set reminders of medical appointments or to take medication. The Amazon Alexa has also been supported by the RNIB (www.rnib.org.uk), for the way it can assist visually impaired people.
end of 2020. An exciting glimpse into the future of wheelchair technology, similar products are sure to be in development in the near future. Technology is constantly evolving, opening up a world of possibilities and opportunities. With accessibility a key concern in the ever-evolving industry, we can’t wait to see what comes next.
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OrCam Read. A handheld digital reader unlike any other Visit OrCam at Naidex 2020 Stand N532
| orcam.com |
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REVIEW
SKODA SCALA
The Scala sits between Skoda’s Fabia and Octavia models, offering a classy and versatile hatch at keen prices, reviews Alisdair Suttie
INSIDE There’s a pleasing simplicity to the style of the Scala’s dash and front cabin, which is to say it’s clearly laid out. The main instruments are easy to read in bright sun or at night, the rotary dials for the ventilation are intuitive and the infotainment screen among the easiest to use we’ve ever encountered. The Scala backs this up with strong quality and excellent comfort. Getting into and out of this Skoda is made easier by front
doors that open wide but are not so long as to be hassle in tightly packed car parks. All-round vision is good for the driver, while those in the back enjoy an airy feel. As for the boot, the Scala’s is one of the biggest in its class at 467-litres and can be extended further with the 60/40 split and tumble rear seats. Our only gripe here is the drop from the load sill to the boot floor can make it harder to lift out heavy items.
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“Easy is the word
enable motoring
that sums up the Skoda Scala as you simply jump in and get on with it
“
DLA Advance Payments start from £395 on the Motability Scheme. Learn more about funding with Mobility, www.motability.co.uk
EQUIPMENT Starting with the S model, you get 16-inch alloy wheels, heated door mirrors, Lane Assist and six airbags. Skoda provides a Hill Hold function to stop the Scala rolling backwards during hill starts. You also have air conditioning, height adjustable driver’s seat, electric windows all round and a 6.5-inch colour screen for the infotainment. Move to the SE version and you gain front fog lights, rear parking sensors, cruise control and Skoda’s trademark umbrella handily stored in the driver’s door. A leather-trimmed steering wheel adds to the ambience, while the central touchscreen grows to eight-inches and has SmartLink to connect to your phone. The SE L tops the range with 17-inch alloy wheels, rear privacy glass and front fog lights that illuminate corners as you turn the steering. Keyless entry is a useful addition, while the 9.2-inch infotainment screen is very easy to read. You also get Skoda’s Virtual Cockpit with dash screen that can be configured to suit your preferences for information and satnav instructions.
DRIVING Easy is the word that sums up the Skoda Scala as you simply jump in and get on with it. There’s no need to learn where controls are or how functions work, it all just seems to be extremely well thought out and natural. This translates in to how the Scala drives. On any surface, it has a plush ride that makes deft work of potholes and ridges, leaving you in comfort and a lot of refinement thanks to very little engine, wind or road noise. In corners, the Scala is competent, while around town it’s easy to park with light steering and good allround vision. The least powerful 1.0 TSI 95PS petrol engine only comes with a six-speed
manual gearbox, while the more potent 115PS version and 150PS 1.5 TSI can be had with a dual-clutch automatic. We’d take the 1.5-litre engine for its greater flexibility and near identical fuel economy to the smaller motor’s. There’s also a 1.6 TDI turbodiesel for those who drive higher mileages.
SUMMARY Spacious, comfortable, and classy, the Skoda Scala is a great value small hatch with an appealing no-nonsense approach.
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enable motoring
The Big Event SUMMER 2020
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Meet all your motoring needs and discover the latest industry adaptations at this year’s The Big Event in July, the UK’s largest free event showcasing vehicles available on the Motability Scheme
he Big Event returns to the NEC in Birmingham on 3 and 4 July 2020. The flagship show houses the UK’s largest display of cars, Wheelchair Accessible Vehicles (WAVs), powered wheelchairs and scooters available on the Motability Scheme. In addition to the event in Birmingham, there will be four regional One Big Days taking place across the UK.
ON DISPLAY
Free for all to attend, the events will help visitors find out more about leasing a car, WAV, powered wheelchair or scooter through the Motability Scheme’s worry-free motoring package. At the events, visitors will have the chance to speak to helpful Scheme advisors, Scheme partners: RAC, RSA, and Kwik Fit and will also be able to test drive both standard and adapted cars.
SPEAKERS
For the third year, The Big Event will welcome a range of expert speakers to its event line-up. Between 10am and 3pm guests will be able to attend several talks to find out more about the Motability Scheme and other motoring related topics. A full lineup will be announced closer to the event date, so stay tuned. Find out more about The Big Event and the regional One Big Days online at motability.co.uk/news/one-big-day
The Big Event NEC, Birmingham 3 and 4 July 2020
FOR MORE INFORMATION
To find out more on leasing a car, scooter or powered wheelchair through the Motability Scheme, visit motability.co.uk or call 0800 953 7000.
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enable life
Product Roundup Don’t miss our top pick of accessible products on the market this spring
HEALTH
MOTORING
ALARMED PILL BOX
LDV G10 MAXUS
Pivotell, £18 exc VAT www.pivotell.co.uk, 01799 550979
Accessible Vehicles, From £25,995 www.accessiblevehicles.co.uk, 01704 512 437
The LDV G10 Maxus has been exclusively brought to the UK for Accessible Vehicles, and converted for wheelchair access. With a long list of standard features, spacious wheelchair channel and easy to use ramp the G10 sets new standards for wheelchair accessible vehicles. Available in four or six seat plus wheelchair configurations.
With help from the Minitell alarmed pill box, which has five separate compartments for medication, you will be alerted with an alarm, vibration or both when medication has to be taken. The product is compact for daily use, with settings for five alarms per day, or once a day for five days.
HOME
CUPCAPS
Tenura, £12 inc VAT www.tenura.co.uk, 01254 832266
Prevent spilling when cups are shaken or knocked with the CupCaps from Tenura. Coming in a pack of two, with dimensions including 80mm and the other 60mm, the CupCaps are strong, washable and have excellent grip qualities for multiple use. Applied with ease, this is a great aid for those with dexterity issues.
DEMENTIA
MOBILITY
GPS TRACKER
I-GO FLYTE 90
Tech Silver, £114.95 inc VAT www.techsilver.co.uk, 03300 10 14 18 Avoid panic when a loved one or client living with dementia loses their coordination or takes a wrong turn with the GPS tracker. Complete with a long-lasting battery, free tracking app – plus no monthly fee – and no max distance, the tracker will allow independence and security for all users.
I-GO, £167.99 inc VAT www.careco.co.uk, 0333 015 5000
Providing ease of use for attendant and user, the I-GO wheelchair is guaranteed to assist when getting from A to B. Complete with swing-away footrests for seamless access; lightly padded seat; supportive, flexible backrest, plus gripped handles this is the perfect addition for people with mobility needs.
HEALTH
INTIME INCONTINENCE PANTS
iD, £13.99 (pack of 12) www.id-direct.com, 0800 389 6185
With its innovative hipster shape, Intime provides maximum protection from leaks, absorbing eight times its own weight. The low waist has been designed with discretion and comfort in mind, meaning women won’t feel like they are wearing incontinence pants. Enable readers can get 25% off using discount code: intimeuk25
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12/12/2019 14:23 16:05 02/03/2020
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March / April 2020
02/03/2020 11:17
PICS: © NETFLIX
George as Isaac in Sex Education
Let’s talk about
Sex (education) Netflix Original Sex Education is re-writing the rules of sex ed, while making diversity a priority. Season two newcomer George Robinson talks disability representation and why the show’s themes resonate with him
R
eleased in January 2020, season two of Sex Education took viewers further from the regimented sex ed they received in school with a diverse, talented cast to front the series. It also introduced the world to George Robinson who plays Isaac: a teen with a spinal cord injury who is new to the Moordale caravan park and ready to cause mischief.
CHANGE
Since his early teens George had a passion for acting, involved in school plays and thriving in drama class. But, after sustaining a spinal cord injury at the C4/C5 level during a rugby game when he was 17, George had to consider if he still wanted to pursue a career in acting. “Even though you’re playing a character and presenting yourself as that character, did I want to put myself in the public sphere as a disabled actor or a guy in a wheelchair?” asks George. “I thought
yeah, I might as well – I never wanted to lose the feeling of having a good time on stage, acting, learning lines, I always found the whole process incredibly exciting.” Now 22, George has landed his first major acting role in Netflix Original, Sex Education – which has made waves in terms of representation, and answering all the burning questions we all have as teenagers when it comes to sex. Charmingly sarcastic and unembarrassed, Isaac and his distinctive personality haven’t changed much for George, although he notes that he now has a lot more meetings to attend. “Simultaneously a lot has changed while nothing has, I’m still me, I still exist in the same format as before but more people have seen my face and heard my name,” explains George.
REPRESENTATION
After reading the character description for Isaac, George knew he was the perfect fit. During the casting process
one detail stood out: the casting of a disabled actor in a disabled role, with the intention to adapt the script to that individual’s disability. This attitude is something George wants to see more of in mainstream media. “At the end of the day Isaac isn’t defined by his disability,” emphasises George. “Let’s say they cast a person who is an amputee, he would still be sarcastic, still be the person that makes waves in the campsite.” Sex Education represents many different groups in society with its diverse cast, but it’s something George wants to see a push for in other TV programmes and movies in order to show people that they are not alone. “It’s definitely getting there, people like myself who are being thrust into the spotlight is making people aware that actors are out there with these stories,” explains George. “I think you’ve got these stories that need to be told that people don’t know about because there’s been a lack of representation
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interview
Let’s say they cast a person who is an amputee, he would still be sarcastic, still be the person that makes waves
in the media, so people don’t know if they’re normal.” Since the show became available to stream on 17 January of this year, George has received messages from viewers, all expressing their hope at seeing a disabled character authentically portrayed in such a popular show.
SIMILARITIES
On screen, George sees a lot of his own personality in Isaac, but he does like to think that he’s a bit nicer and a little less sharp around the edges. “I think I’ve got a similar method of deflection that Isaac has and that’s an issue that I’m trying to work on within myself, to be straightforward and tackle things head on instead of deflecting more,” reveals George. The character has prompted him to build his self-confidence in more ways than one, George says: “I think it’s taught me to be a bit more comfortable within
myself and the fact that if people can’t take me for who I am, well Isaac is totally fine with that and I really aspire to get to that level of self-confidence. “It’s really helped me get towards that; I have a lot of love for Isaac.”
REFRESHING
With Sex Education’s wit and humour, it’s easy to forget that the show is doing what its title describes for so many young people: answering their questions on sex and healthy relationships. For George, this is part of the show’s success and charm, he enthuses: “It’s so straight to the point and not afraid of being like we’re going to explore this and this about sex. “It’s something we all share and all participate in, but it has always felt like everyone is navigating it themselves, to have it explored through a TV show, largely on exploring stuff considered
taboo, is incredibly refreshing actually.” As for Isaac’s relationship with Maeve Wiley (played by Emma Mackey), one of the show’s most-loved characters, George would like to see them share more about their similar childhood experiences and grow even closer than seen in season two. “I think Maeve can possibly dull Isaac’s sharp edges,” hopes George. “Maeve and Isaac together would be really beneficial for Isaac in terms of lowering his guard which always seems to be up.” Season two gave viewers a peek of what could be around the corner in terms of exploring relationships and intimacy as a young disabled person. With season three recently confirmed, we’re keeping our fingers crossed that we get to see George and Isaac grow in confidence on screen, form meaningful relationships and explore sex with a disability on the world’s most popular streaming service.
Read the full interview with George Robinson online at www.enablemagazine.co.uk enablemagazine.co.uk
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enable employment
PUTTING STRESS IN BALANCE
Stress can be an accelerant for success, or it can creep over into a debilitating condition. When stress becomes overpowering, how can you maintain a healthy balance?
T
here is no doubt that we’ve all experienced stress in the workplace at one point or another – it’s perfectly normal. However, over time, continued exposure to stress can become a problem that could cause you to burn out, need time off of work or even exacerbate an already underlying condition such as MS leading you to experience a relapse. Stress can be defined as: the adverse reaction people have to excessive pressure or other types of demand placed on them. If you feel that workplace stress is becoming uncontrollable, there are methods that can help you maintain a healthy working balance.
TALKING
We all know that talking is the first step to getting support for a mental health condition, but it is also the hardest. In the workplace, if you’re feeling overwhelmed, it is important to speak with a manager or colleague you feel comfortable with to discuss how you could work together to manage your workload or the pressures you’re feeling. Living with a disability, reasonable adjustments should be made to ensure you can do your job to the best of your
ability. Some reasonable adjustments to manage stress and ensure all members may involve adaptive aids, but it can also of staff are happy to open up during include flexible and part-time working. challenging times. More employers are taking the Mental Health at Work (www. mental wellbeing of their staff mentalhealthatwork.org.uk) into consideration, providing is another charity working mentally healthy workto educate employees Did you know: place initiatives. and employers on the work-related stress importance of positive mental health in the HEALTHY LIVES accounts for over a workplace. Did you Introducing the Work third of incidences know: work-related Positive tool (www. of ill health stress accounts for over healthyworkinglives.scot) a third of incidences of ill can help employers to fulfil health – the onus on support the requirements of stress at work is prevalent. risk management, with a survey With one in four people in the to discover how members of staff UK alone experiencing mental health are coping with their mental health. The conditions, don’t let extreme levels of Health and Safety Executive (www.hse. stress at work become a debilitating gov.uk) also has a wide range of toolkits health condition. Improved knowledge available to prevent work-related stress and talking can help maintain a positive and training on how to talk about mental balance. health at work. Similarly, promoting positive mental health in the workplace can help alleviate challenging times. From FOR MORE INFORMATION understanding stress or other mental Guidance and advice is available if you are health conditions such as depression and experiencing stress in the workplace. Support can anxiety, education in the workplace is an be found at Scope (www.scope.org.uk), ACAS important place to start. ACAS (ww.acas. (www.acas.org.uk), and TUC (www.tuc.org.uk). org.uk) provide a range of tools on how
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Deciding to disclose In the workplace, deciding to disclose a disability or hidden illness to your employer can be daunting – and a personal decision. Even so, disclosure can have beneficial outcomes if your disability affects how and when you are able to work
D
id you know: by law, you are not required to disclose a disability to your employer, but if you decide to it can be beneficial for you, your colleagues and your employer. The decision to disclose a disability can be more difficult for the 13.3 million people in the UK with a hidden disability. “As disabled people we face many barriers in our way to leading full and fulfilling lives,” explains Fazilet Hadi, policy lead at Disability Rights UK. “Sometimes it is quite a burden to carry around stuff and not be open about it.” Fazilet is visually impaired and had to decide whether to disclose this to her employer when she was first losing her sight. “I can’t hide it so I don’t have a choice, but when I look back at my younger self I wish I had been braver because I put a lot of stress on myself by trying to hide
it,” remembers Fazilet. “Looking back, it made life harder for me but it was what I chose to do for good or bad.”
DECISION
The most important thing to remember is that disclosing a disability to your employer is a personal decision and it is up to you to make this choice. You don’t have to disclose your disability at the start of your employment: if your situation, requirements or decision changes you can speak with your employer at any stage. “There are people who probably do worry legitimately that if they raise an impairment or disability that they won’t get a positive reaction,” sympathises Fazilet. “The employer is not always giving the right signals that sharing can be accommodated and showing information that it will be received positively and accommodated soundly.”
Each situation is unique, and you may have multiple reasons for feeling uncomfortable when disclosing disability. “There are some people with hidden disabilities who aren’t at a stage where they want to talk about it,” says Fazilet. “People who, like I was, are coming to terms with their own impairment and it just takes a bit of time sometimes to feel brave enough to articulate your needs and be open that you have needs.” Ahead of making your decision, check if your employer has any existing policies or practices that could benefit you if you disclose your disability. “Before I went into the heart of that conversation I would think carefully about what you need and what the business needs,” Fazilet suggests. “Go in being knowledgeable about the kind of culture and policies of the organisation
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RIGHTS
If you do make the decision to disclose your disability to your employer, you now have additional rights alongside any workplace policies that could help you. “The first thing to say is: you do have to tell your employer for the rights to come into play,” stresses Fazilet. “You have a right to benefit from policies your employer has in place on disability or the right to use things like the Access to Work scheme.” The main legal benefit to disclosing your disability is your employer’s responsibility to make reasonable adjustments to ensure you aren’t substantially disadvantaged when doing your job. This can include letting you work somewhere else, such as on the ground floor for wheelchair users, changing the recruitment process, or offering employees flexible working hours.
“I wish I had been
braver because I put a lot of stress on myself by trying to hide it
“
and being clear about what you need to do your job well and what the employer needs to deliver.” Once you have a clear idea of what could help you to do your job better, in turn helping your employer, you are in a good place to start this conversation.
“These things help you feel more confident to take charge and then as you have got the law on your side you should go into the conversation with a level of confidence,” says Fazilet. The Access to Work scheme can cover help you need at work that is not covered by your employer making reasonable adjustments. This could be special equipment, support worker services or help getting to and from work.
BENEFITS
The benefits of disclosing your disability to your employer go further than legal rights, these can be positive for your mental health as well as your physical health.
“You’ll probably feel more comfortable not concealing something,” advises Fazilet. “It can benefit your colleagues too, especially if they will support you and make adjustments.” The opportunity to negotiate flexible working hours can also improve your satisfaction at work, your workplace might already have a flexible working policy in place that you can enquire about. This could mean you don’t have to take time off to attend appointments related to your disability, you could travel at quieter times or take days off if your condition flares up. “Flexible working could already be available that may benefit you without disclosing,” reveals Fazilet. “That allows people to be really productive in terms of their employer but also to protect their own wellbeing and balance that with other personal issues, flexible working is definitely a win/win for the employer and the employee.” Greater diversity in the workplace can only be a positive for both employees and employers. If you make the decision to disclose your disability to your employer you could feel more comfortable, protected and able to better do your job.
FOR MORE INFORMATION
If you would like more information on disclosing your disability to your employer speak to Disability Rights UK (www.disabilityrightsuk.org) or Citizens Advice (www.citizensadvice.org.uk).
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Learn • Challenge • Explore • Experience Outdoor residential and day experiences in the stunning Kielder Water & Forest Park. Our innovative programmes encourage children and young people of all abilities to learn more about themselves, build confidence and self-esteem through challenging and adventurous activities. We are experienced in working with young people with physical, sensory and learning impairments, providing an inclusive, fun and exhilarating experience in a safe and supported environment. We are fully flexible and can arrange bespoke programmes to accommodate groups. 01434 250232 enquiries@calvert-kielder.com www.calvertkielder.org.uk Calvert Kielder, Kielder Water & Forest Park Hexham, Northumberland, NE48 1BS Registered Charity No. 511851. Company limited by guarantee. Registered in England No. 1596913.
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enable employment
MAKING
CAREER MOVES
Progressing in the workplace can ensure you are satisfied in your career while continually learning new skills. We highlight some of the opportunities available to help you make the most of your career in 2020
F
rom improving your time keeping to getting a promotion, there’s something to help and support you no matter what your career goals are for 2020. Progressing in your career doesn’t have to mean making a big change or a lot of extra work, it could be as simple as completing a CPD course or having an informal talk with your employer.
TRAINING
Continuing professional development (CPD) courses (www.cpduk.co.uk) are a great resource to learn more about advancements in your industry or to upskill. CPD is a term used to describe learning activities that professionals engage in to develop and enhance their abilities at work. From short online courses that take a few hours to weekend-long on location courses with higher education providers. Courses, workshops and seminars can all count as CPD. Distance learning online CPD courses are a great way to progress in your career if you face barriers when travelling to new places or prefer to work from home. A supported internship or traineeship could also be a great way to find out about working in an industry or gain new skills while getting support from someone who understands your disability.
CHANGE
If you’re looking to start a new career or make a big change this year, there is specialised support available to help you decide what is best for you. Charities like Scope (www.scope.org.uk), Mencap (www. mencap.org.uk) and Business Disability Forum (www.businessdisabilityforum.org. uk) can provide advice if you are looking to make a change. If you are on the job hunt sites like Remploy (www.remploy.co.uk) and Disability Job Site (www.disabilityjobsite.co.uk) let
you search for vacancies with Disability Confident employers. Depending on what industry you would like to move into, you might need to study for further qualifications. The Open University (www.open.ac.uk) provides distance learning courses so that you can study at a time and place where you are comfortable. The Open University also provides a wealth of support for people with a disability that choose to study with them. From course materials in adapted formats to mental health support, the dedicated disability support team can aid you with any problems or concerns you may have. 2020 could be your year to progress or refresh your career, what path will you choose?
There’s something to help and support you no matter what your career goals are
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Monday 18th - Sunday 24th May Find out more about Scotland’s Learning Disability Week: www.scld.co.uk Twitter: @SCLDNews Facebook: @ScotCommission Instagram: @scldnews
Kidz to Adultz South 2020 Free event organised by Disabled Living 140+ Exhibitors Thursday 7th May 2020, 9.30am - 4.30pm Farnborough International Exhibition & Conference Centre, GU14 6FD
Dedicated to children and young adults with disabilities and additional needs, their parents, carers and the professionals who support them.
Charity no: 224742
077_EN_MA20_ADV.indd 77
Email: info@disabledliving.co.uk
CPD Seminars
Fun & Features
Tel: 0161 607 8200
02/03/2020 15:42
Access all APPRENTICESHIPS When thinking about the next step in your career or education, an apprenticeship can be a fantastic chance to earn while you learn. As more apprenticeships consider disability needs, two apprentices explain why you should take the leap
A
pprenticeships are an exciting and practical way to enter into an industry, and have been gaining popularity in recent years, as more people learn about the benefits and opportunities they offer.
APPRENTICESHIP
An apprenticeship allows you to combine education with further study, and helps you to develop the skills needed to succeed in your chosen industry. There are various different types of apprenticeship: from a foundation apprenticeship that can be completed as one of your school subjects; to graduate, which allows you to study at university while gaining practical experience alongside it. The most common apprenticeship is modern, where you can earn a wage alongside gaining an industryrecognised qualification. Here a company can train new members of the team, or even upskill current members of staff. From healthcare and agriculture, to business and engineering, more industries are understanding the value that apprenticeships offer, therefore the opportunities to enter your chosen career are increasingly available.
YOUR NEEDS
Apprenticeships are a great option for disabled people to gain the skills and experience necessary to excel in the workplace. With an emphasis on being flexible, apprenticeships can work around your needs, and with a variety of exciting sectors now offering apprenticeships, there’s never been a better time to research the opportunities available to you. Laney, who has cerebral palsy,
recently completed an apprenticeship with the NHS Trust and is now a qualified assistant practitioner in an acute psychiatric inpatient unit. “I wanted to do the programme because it was an easy way for career progression, and I was still being paid to learn,” Laney remembers. “Being able to stay in work and keep up with my skills as well as learn new information, you can progress further.” Working for the NHS, Laney found them to be extremely accommodating of her needs, and the fluctuating nature of her disability. “My ward is really supportive,” she enthuses. “I don’t know what kind of day I’m going to have until I wake up. I’ve had days where they’ve said it’s a study day because I’m struggling to walk. Then we take advantage of my good days and we can get the practical things done. I think people who have a disability can be put off because sometimes there’s not a lot of understanding, but [the NHS] have been really supportive.” Laney undertook her apprenticeship after completing a degree with the Open University, highlighting that an apprenticeship is a great opportunity at any point in your career, and there is no linear way to complete it.
CONFIDENT
According to learning disability charity, Mencap, people with a learning disability are one of the groups that are least likely to be in paid employment: only six per cent of adults with a learning disability have a job, but 65 per cent would like to work. This means that thousands of people who want to work aren’t able to access it. Mencap not only helps people find an appropriate apprenticeship, but also take on apprentices of their own, to help with the running of the charity. After
volunteering with the charity, Becca was given the opportunity to complete an apprenticeship with Mencap’s fundraising team. “The fundraising team runs all of the activities which help the charity do amazing work, like campaigning for equal access to good quality healthcare and running its sports, befriending and supported employment programmes,” explains Becca. “All things that help tackle stigma and improve the quality of life for people with a learning disability like me.” Applying for an apprenticeship can be daunting, especially if you’re unsure how your needs will be met, but companies across the country are increasingly offering accessible apprenticeships, or making the reasonable adjustments
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I’m so proud of what I’ve been able to achieve through my apprenticeship
necessary to make their opportunities inclusive for all. Checking that a company is a Disability Confident employer is the first step to finding the apprenticeship for you.
TEAM PLAYER
“The apprenticeship has definitely given me more confidence,” Laney enthuses. “I can help my colleagues in a decision rather than needing to get further support. It’s made me feel I’m more part of the team because I actually understand what’s going on.” Becca agrees: “The fantastic thing about my apprenticeship was how much support I got, I always knew there was someone to go to. I know from personal experience that people with a learning disability can work and want to work,
and with the right support can make really fantastic employees. “I’m so proud of what I’ve been able to achieve through my apprenticeship at Mencap and I’ve shown myself and everyone else just how much I’m capable of doing.” The support available through an accessible apprenticeship is priceless, and can equip you with not only the relevant skills, but the motivation, confidence, and self-belief that will be invaluable throughout your career. So, if you’re looking for an opportunity to further your education, learn on the job with a company that will adapt their practice to accommodate your disability, all while earning a wage, an accessible apprenticeship could be for you. “My advice to anyone looking for a
supported apprenticeship is to have belief that you can do it,” urges Becca. “Some days might be harder than others but the feeling is great when you achieve things you might not have thought you could do before. “For me, the experience has been incredible and the key thing is how much my confidence has grown and the opportunities I now have. The key thing is to have the confidence to try and to get the right support – that will help you to achieve your dreams.”
FOR MORE INFORMATION
Mencap www.mencap.org.uk NHS Trust www.nhsemployers.org Open University www.open.ac.uk
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enable life
Passion for
Fashion The fashion industry has taken strides in the last year in terms of disability representation, but more must be done to ensure disabled people’s diverse needs are considered when creating clothing. So, what can the fashion industry do?
I
n the last year, brands such as Tommy Hilfiger and Marks and Spencer have launched their own adaptive clothing ranges, while stores such as Superdry, River Island and Primark are using disabled models or mannequins to showcase their clothing. While these brands are leading the way in making fashion more inclusive, this is only the first step necessary to transform the industry and make clothing fully accessible. Elin Williams is a disability and fashion blogger, who is visually impaired. “I always thought of fashion as a visual aspect of life which I assumed I couldn’t really appreciate because of my vision impairment,” remembers Elin. “But, I soon realised it could be so much more than that.”
IMPROVEMENTS
Brands are beginning to listen to disabled shoppers, with accessibility in-store as well as in the functionality of Elin Williams
clothes being considered. Increasingly, disabled people are being asked to model in catwalks and advertising campaigns for clothing brands. Products with easy closures, openings and adjustable features to accommodate prosthetics, stretchy fabrics and seated wear for wheelchair users are becoming progressively available online. However, inclusive clothing lines can often be inaccessible due to high prices; disabled designers are overlooked; and many accessible products are only available online, unavailable to try on in-store. All of this can lead to disabled people feeling ignored.
Sophie Bradbury-Cox
MARKET
Sophie Bradbury-Cox has spinal muscular atrophy, and uses Instagram to document her passion for fashion as well as showcase the accessible opportunities available. “When you think that disabled people make up 22 per cent of the UK population, then high street brands really need to start catering for us,” Sophie urges. “Just by speaking to disabled people, they could find out what the majority of us would require and base clothing around that.” The more brands that consult disabled people throughout the creation of accessible lines, and commit to hiring disabled fashion designers to lead projects, the better they’ll be able to cater to disabled shoppers.
EXPRESSION
“Clothes and fashion are a huge part of me and how I express myself,” enthuses Sophie. “It’s important that as disabled people we don’t shy away, but make our mark and feel confident in what we wear.” “One of the main reasons I enjoy
Clothes and fashion are a huge part of me and how I express myself fashion is because it’s so unique and personal to everyone,” Elin agrees. “I think a lot of expression can be found through the clothes we choose to wear and everyone should have the opportunity to express that freedom and find enjoyment in it.”
FOR MORE INFORMATION
Keep up with Sophie (@fashionbelle on Instagram) and Elin’s (www.myblurredworld.com) fashion blogs to find out more about the latest accessible trends.
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enable voices
The power of ART At 21-years-old, Indian artist and illustrator Jijo Das is winning the praise of people around the world with his art. This year, Jijo’s design has been chosen for World Down Syndrome Day’s #LotsOfSocks campaign, he tells us how we can all learn from each other
W
ith continual support from his family, Jijo Das has been creating art since he was very young, with his work becoming more impressive with age. Attending a poly-technic, an animation studio called Anicipate and playing the drums, Jijo is continually learning and advancing his work. “I am going to Anicipate to learn to become a professional illustrator. Neerav Doshi, founder and leadanimator at Anicipate, and my other animator friends in Anicipate show me many new things – I like to experiment,” explains Jijo. “My polytechnic also gives me projects I have to complete within the given time.”
#LOTSOFSOCKS Painting
PASSION
Jijo’s older brother, Aniket, designs motorbikes and also gives Jijo projects to work on, showing him knew skills and techniques. “He is my first inspiration, I always sketched when he sat [down] to sketch,” reveals Jijo. “Sometimes I sketch and draw new designs [for] cars and bikes and show him. “When I started to take art seriously, I began with copying as my elder brother taught me and I followed all that he said.” Jijo also cites his mother, Moushumi, as one of his main inspirations, both in art and in everyday life, he enthuses: “All
the time she inspires me, sits with me, takes me to art school, [to] art teachers, exhibitions, shows me famous paintings, and tells me stories.” As a boy, Jijo first learnt to draw from books on how to draw popular Disney and Pixar characters, with his favourites including Moana, Rapunzel and Simba. Now, he comes up with his own ideas which are advanced by his teachers.
Jijo and his brother
Lots of Socks
“
I feel we can do everything…we all learn from each other
With his passion and determination, Jijo knows he can achieve whatever he puts his mind to. This passion is what inspired Jiji to submit a design for the official 2020 #LotsOfSocks for World Down Syndrome Day, taking place on 21 March. For Jijo it holds personal importance, allowing him to show the world that Down’s syndrome doesn’t and won’t hold him or other people back. “This is a very special day for us, I think,” explains Jijo. “Many Down’s syndrome individuals gather together, we make friends, hear their stories and I feel very good to meet with many other Down’s syndrome children, each one has something new to tell me.” When he found out his design had been selected he recalls dancing with his family with joy. For him, it is important to use his art to show the wider community exactly what people living with Down’s syndrome can achieve. “I feel we can do everything – running, swimming, gymnastics, office work, dancing, and all,” he emphasises. “We all learn from each other.” With high hopes for the future, Jijo wants to be a professional artist and inspire other people with Down’s syndrome to pursue art as an interest.
FOR MORE INFORMATION
Jijo with his parents
Follow Jijo’s story and view his art online by visiting, www.artofmyoptimus.com
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24 – 28 Mar
for Ev Everyone
Audio Described: Sat 28 Mar, 7.30pm Touch Tour: Sat 28 Mar, 6pm Captioned: Sat 28 Mar, 2.15pm
BY SALLY ABBOTT CO-DIRECTED BY KATHY BURKE AND SCOTT GRAHAM
Signed: Fri 27 Mar, 7.30pm
A Frantic Assembly and Theatre Royal Plymouth Production, co-produced with Curve
Jamie Wilson and Whoopi Goldberg in association with Curve present A BRAND NEW PRODUCTION
21 Apr – 2 May Audio Described: Sat 2 May, 2.15pm
Brenda Edwards
Touch Tour: Sat 2 May, 12.45pm
Lesley Joseph
Starring
as Deloris
as Mother Superior
A Curve, Leeds Playhouse and Queen’s Theatre Hornchurch co-production
Captioned: Tue 28 Apr, 7.30pm
with
Clive Rowe as Eddie Souther
Signed: Fri 1 May, 7.30pm Music by
Alan Menken Additional Book Material
Lyrics by
Glenn Slater
Douglas Carter Beane
Book by
Cheri Steinkellner & Bill Steinkellner
Based on the Touchstone Pictures Motion Picture “Sister Act” written by Joseph Howard Presented by arrangement with Music Theatre International (Europe) Ltd
28 Apr – 2 May
A Curve, Leeds Playhouse and Queen’s Theatre Hornchurch co-production
All performances of Maggie May are Dementia Friendly
A new play by
Director
FRANCES POET JEMIMA LEVICK
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