Enable January / February 2021

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LET’S GET MND-SMART

Discover the new trials underway to combat MND

Tanni Grey-Thompson An exclusive column from the UK’s greatest Paralympian

The UK’s leading disability and lifestyle magazine

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January / February

LOOKING AHEAD Friends of Enable reveal their hopes and ambitions around disability in 2021


Forget 2020. Plug into the future.

You’ve waited long enough to get back out there. To broaden your horizons, have new experiences and plan your next big adventure. Whatever this year has in store, we’re going further to give you confidence on the road ahead – with the UK’s best-selling plug-in hybrid. The Outlander PHEV Dynamic. Now with an advance payment of just £2,999.

Motability Stock Available Visit mitsubishi-motors.co.uk to find your nearest dealer.

Fuel economy and CO₂ results for the Mitsubishi Outlander PHEV Dynamic / MPG (l/100km) (weighted combined): 139.7 (2.0) /Electric energy consumption (weighted combined): 3.68 miles/kWh / CO₂ emissions (weighted): 46 g/km / Equivalent all-electric range: 28 miles The Motability Contract Hire Scheme is administered by Motability Operations PLC (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate of the Mobility Component of the Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment which will be taken in lieu of the four weekly rental. Subject to availability, whilst stocks last and may be amended or withdrawn at any time. Terms and Conditions apply. Please ask the dealer for full details. Rentals valid for applications placed between 1st January and 31st March 2021. These figures were obtained using a combination of battery power and fuel. The Mitsubishi Outlander PHEV is a plug-in hybrid vehicle requiring mains electricity for charging. Figures shown are for comparability purposes. Only compare fuel consumption, CO₂ and electric range 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, accessories fitted (postregistration), variations in weather, driving styles and vehicle load.

102165 Q1 2021 Motability Outlander PHEV 297x210.indd 1

18/12/2020 12:00


Welcome Celebrate the start of the New Year in style: By reading the new issue of Enable Magazine…

The UK’s leading disability and lifestyle magazine

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EDITOR’S PICKS... 25 REBUILDING AFTER DIVORCE Divorce is a challenging time for all involved, but when raising a disabled child communication is essential. 37 CALLING FOR DISABILITY SPORT SUPPORT The UK’s greatest Paralympian, Baroness Tanni Grey-Thompson writes exclusively for Enable Magazine about the importance of breaking barriers to sport. 48 MISCARRIAGE AND LEARNING DISABILITY: ACCESSING INFORMATION We investigate the need for accessible information for people with a learning disability experiencing a miscarriage.

ave you ever been happier to wave an old year goodbye? We’ve got high hopes for 2021, and so do our old interviewees. From COVID-19 and sepsis survivor Caroline Coster to Katie Piper, a selection of people have spoken to the team at Enable to discuss their hopes, goals and ambitions for the year ahead over on page 31. Alongside the positive thoughts for the year ahead, it’s hard to ignore the challenges that many people have faced. On page 13 we speak to carers about their roles and responsibilities, and what they wish they had known before becoming a carer. This year, it’s more important than ever before to check in with your loved ones, but we know talking about mental health can be scary. Don’t miss our guide on opening up and discussing mental health openly on page 34. Back in December, we all watched with baited breath as 90-year-old, Margaret Keenan from Coventry became the firs erson in e o recei e e fi er io ec accine for COVID-19. Over on page 28 our columnist, Ade Adepitan discusses his personal connection to vaccines and what the fi er io ec accine eans or eo le ere in e and ur er afield All this plus much more lies ahead, so make sure to sit back, relax and enjoy the latest issue of your favourite disability and Get in touch lifestyle title. editor@enablemagazine.co.uk n il ne i e facebook.com/enablemagazine twitter.com/enablemagazine

Lorne Gillies, Editor

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At Enable HQ we’ve started our own book club, and there have certainly been some interesting reads. Have you joined a club recently?

EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITER Emma Storr emma.storr@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Ade Adepitan Tanni Grey-Thompson Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Alice Winslow production@dcpublishing.co.uk

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BOOK CLUB

PUBLISHER Denise Connelly denise@dcpublishing.co.uk

SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk

Behind the scenes You can be guaranteed exclusive content with Enable, online we spoke with Sir Tom Hunter about his £1m donation to help fund music for dementia and in this issue we went behind the scenes with BAFTA on page 81.

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Our online presence is continually growing so make sure to follow us on social media, and visit our website for interviews, breaking news and more. Right now we’re spotlighting the My Health, My Life report from Mencap.

©DC Publishing Ltd 2021. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.

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What’s inside January/February 2021

Voices

Spotlight

20 HEARING LOSS ON THE WORLD STAGE News anchor, Lewis Vaughan Jones discusses adapting to sudden hearing loss.

10 THE HIDDEN ISSUE OF DISABILITY HATE CRIME As disability hate crime increases, what needs to be done to ensure a safer community?

28 A HISTORIC MOMENT FOR VACCINES Ade Adepitan talks about 2020’s hot topic: COVID vaccines.

34 TEA AND TALK: MENTAL HEALTH CHECK-IN It’s time to talk with our guide on starting a mental health conversation.

46 MAKE POLITICS CIVIL AGAIN Never underestimate the power of words, especially during a presidential campaign writes columnist Tim Rushby-Smith. 81 DISABILITY HITS THE SPOTLIGHT Go behind the virtual red curtain during the 2020 BAFTA’s. 82 BREAKING BARRIERS WITH BRYNN We talk to the teenager cycling the Shetland coastline for charity.

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48 MISCARRIAGE AND LEARNING DISABILITY: ACCESSING INFORMATION A look at the support on hand for people experiencing miscarriage with a learning disability. 71 LET’S GET MND SMART Under the lens of breakthrough trials for MND.

Care 13 POWER OF LOVE: UNDERSTANDING CARE Carers reveal their experiences of providing care for a loved one.

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37 43

82

25

WIN

We’re giving one lucky winner a state-of-the-art Google Home over on page 56!

16 #YOUCANCARE The campaign highlighting the importance of carers.

40 DISABILITY EVENTS Get virtual with our top pick of events for the months ahead.

18 WHEN I’M GONE Parents reveal how they’re planning ahead for their disabled child’s care after they pass away.

43 HELLO HOBBIES Gardening to arts and crafts, discover a new hobby for 2021.

Finance

63 PRODUCT ROUNDUP Our pick of the accessible products on the market.

50 GET ENERGY EFFICIENT This Big Energy Savings Week get confiden i our one

Housing

74 GAINING FINANCIAL CONFIDENCE e in e no i our finances with our hints and tips.

Family 25 REBUILDING AFTER DIVORCE The power of communication during separation.

Health 22 DECODING SLEEP PROBLEMS The importance of sleep on your mental and physical wellbeing. 66 NORMALISING ARTHRITIS IN YOUNG PEOPLE A woman shares her experience of living with arthritis from the age of 19. 68 RARE IS STRONG We look at the celebrations taking place this Rare Disease Day.

Life 31 NEW YEAR GOALS Friends of Enable share their hopes, goals and ambitions for the year ahead.

52 HOME, SWEET, ACCESSIBLE HOME Make your house a home with the right adaptations for your needs.

Technology 61 REQUESTING TECH FOR LIFE The campaign to get adapted technology beyond work and education.

Sport 37 TANNI GREY-THOMPSON: CALLING FOR DISABILITY SPORT SUPPORT Baroness Tanni Grey-Thompson writes an exclusive column for Enable.

Employment 77 ACCESS AT WORK WITH AUDIT SCOTLAND Finding employment in the public sector with a disability.

Education 78 PLANNING TO RESKILL Release a new passion and reskill for a change in career.

Motoring 58 REVIEW: KIA NIRO Alisdair Suttie hits the road with the Kia Niro.

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News Disability education on TikTok

JOURNALIST AND DIGITAL CREATOR Lucy Edwards has become e firs disabled i o crea or spotlighted for her work debunking myths around disability. Lucy uses her platform on the social media site to educate followers and users on what it is like to lose your sight. Similarly, Lucy’s videos explain how a blind person uses their phone, puts on makeup, the importance of disabled parking and how to communicate using braille. Further covering topics on how to greet a blind person and why you should not stroke a guide dog, Lucy’s videos have amassed thousands of views and likes for her fun and educational videos.

INCLUSIVE TRAVEL IN REVEALED IN REPORT CHARITY LEONARD CHESHIRE AND Expedia Group have collaborated to create a roadmap for the travel industry to be more inclusive. Both organisations commissioned Breaking Down Barriers to Travel, calling on the travel industry to be more inclusive of disabled people. The report calls for resuming travel activity after 2020 with inclusion in mind.

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Recommendations include barrier free design experiences, inclusive customer service, clear and easy-read information, to including disabled people in design and decision making process. Marriot International have already committed to the challenge, working with disabled travellers to review the design of their accessible rooms.

CALLS FOR COVID VACCINE FOR PEOPLE WITH LEARNING DISABILITIES LEARNING DISABILITY CHARITY MENCAP is calling for greater priority access to the COVID-19 vaccine for people with a learning disability. Following the announcement from the Joint Committee on Vaccination and Immunisation (JCVI) priority list in early December 2020, Mencap

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has urged for people with learning disabilities to be prioritised to receive the vaccine. Public Health data has revealed that people with a learning disability are six times more likely to die from the coronavirus compared to the rate of the general public.


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News

NEW 2021 TRIAL FOR PEOPLE WITH ADVANCED PROGRESSIVE MS CHARIOTMS IS SET TO TEST i dru , cladribine, can slo do n e orsenin o and and ar unc ion or eo le i ore ad anced ro ressi e ecrui en or e rials is se o s ar in earl , e rials ill es dru cladribine, ic as ori inall de elo ed or cancer and is alread used o rea i l ac i e rela sin is is e firs rial o a o en ial disease odi in era ocusin on eo le i ad anced nd e firs rial i no u er a e li i e rial ill use a as called e in ole e es , easurin o ar and and unc ion c an es o er i e e ocie a e co i ed , o su or e s ud

ACTRESS DAME BARBARA WINDSOR assed a a in ece ber a er a rolon ed ba le i l ei er s disease es no n or er roles in as nders and e arr n fil s, a e arbara died on ece ber, a ed , recei in ou ourin s o lo e orld ide a e arbara ill no onl be re e bered or er iconic er or ances on fil and ele ision, bu or ca ai nin or i ro ed care or eo le li in i de en ia n , a e arbara and er usband co i c ell resen ed ri e inis er oris o nson i a e i ion, in collabora ion i e l ei er s ocie , i li in concerns o er de en ia care ia nosed i l ei er s in , i is belie ed er condi ion de eriora ed durin loc do n

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PHOTO: LEEDS RHINOS

PHOTO: ©ALZHEIMER’S SOCIETY

Remembering Dame Barbara Windsor

Kevin Sinfield raises over £2million for MND Association

LEEDS RHINOS CAPTAIN KEVIN infield, , raised o er illion or e ssoca ion a er runnin se en ara ons in se en da s n su or o or er ea a e, ob urro , e in as raisin i al unds and a areness or o or neurone disease , ic e in s or er club and in erna ional ea a e ob urro as dia nosed i in e ini ial ar e as , , i e e en finis in on ece ber in reco ni ion o urro s ru b s ir nu ber



The hidden issue of disability hate crime Disability hate crime is on the rise, even so, only one in 62 cases end in a criminal charge. Lorne Gillies goes behind the crime to discover why cases are not being reported and what more needs to be done

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f you have experienced negative or violent behaviour or incidents directed to you because of your disability, you have been subject to a hate crime. In 2019, one in four adults* aged 16 or over had experienced disabili a e cri e, o e er, is fi ure a be si nifican l i er as many people do not come forward or report incidents to the police. “I think disability hate crime is the hidden hate crime. It is not talked about,” emphasises disability hate crime advocate for Leonard Cheshire, Terry McCorry. It is not uncommon to see instances of crime towards others in the headlines, o e er, rarel i e er do e see eadlines re erencin a e cri e s ecificall due to a person’s disability. Terry continues: “We don’t get the shock and disgust from the wider community saying how awful the crime is.” In fact, disability hate crime goes beyond representation in the headlines.

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Presenter and advocate, Adam Pearson has experienced disability hate crime first hand


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Spotlight

PHOTO: PIERS ALLARDYCE

INJUSTICE Adam Pearson has had a successful career as a journalist, actor and campaigner. Even so, Adam has faced hate crime targeted directly towards him due o is condi ion, neurofibro a osis, ic causes beni n u ours o ro from nerve endings. In Adam’s case, tumours grow from his face. The law, in some sense, is also discriminatory of representation. “If a cri e is co i ed based on race or religion there is a two-year addition to a sentence,” explains Adam. “But for disabili and ender based cri es ere is only an additional six months. “It makes it seem like less of a crime or less i or an e e o iden ifica ion of certain groups who need legal ro ec ion, surel , e s ould all be treated equally – it’s called the Equality Act for a reason.” isabili a e cri e can a e an forms, from teasing, intimidation, online abuse o rea enin be a iour and physical violence. It would appear, unfortunately, that hate crime targeted o ards e disabled co uni is on the increase.

* Office of National Statistics, Disability and crime, UK: 2019, www.ons.gov.uk

NEED FOR EDUCATION During the period of 2019/20, 7,300 disabili a e cri es ere re or ed o olice bu e nu ber o olice c ar es didn e ua e o e nu ber o cri es reported. There are many reasons people don’t come forward, and in a sense, lack of understanding is a driving factor. lo o disabled eo le eel e a e con ribu ed so e o o e circumstances which have made the hate crime happen, particularly eo le o a e ac uired a disabili , emphasises Terry.

duca ion or e disabled co uni and wider society is imperative to ensure more people feel safe and informed when coming forward to report a crime, or even reach out for support. da adds isabled eo le need o be made aware of their rights, people need to no a is or isn acce able, and a is or isn’t legal. is er i or an a disabled people know, understand and recognise hate crime and what it is so when they see it, they can call it out and know what their ri s are no onl or e bu or o er disabled eo le “We need to look at what is hate crime and a is us bad be a iour ere is a really thin line,” continues Adam. “[Hate crime] affects people in a really dramatic way, from not wanting to leave the house or not going to certain places at certain i es i reall a ec s a erson s abili o live in their own skin, it is very restrictive.”

FAILURE no er sad reali is a an disabled eo le eel ailed b e le al s s e recent report from Leonard Cheshire and United Response (www.unitedresponse. org.uk) revealed that only one in 62 re or s o disabili a e cri e recei ed a charge. A Freedom of Information (FOI) request was put forward to 36 police forces across England and Wales, which found that nearly 21 crimes were re or ed on a dail basis durin on average 10 crimes per day involved an ac o iolence o ards a disabled erson Adam says: “It gives zero faith that the system works. If you were a parachutist and they told you only one in 62 parachutes work then you wouldn’t do it; a s o disabled eo le eel abou e parachute that is the legal system. This is a errible eelin o a e

Regardless if you feel an incident is too small to reach out to the police, it is imperative to document every incident. Terry adds: “It is recognised that if an incident continues, typically it will continue and s ar o beco e a cri e e an i social be a iour, e in i ida ion, i can escala e Adam has reported a crime targeted o ards is disabili , bu , a er e accused as ues ioned b olice, e c ar es ere dro ed b e ro n rosecu ion Service. “I didn’t realise hate crime had a severity, I thought it was either illegal or it wasn’t,” Adam adds emphatically. Despite challenges faced, it is never acce able o eel scared or in i ida ed in your own home, local community, or even online. Document any occurrences that have left you feeling upset or stigmatised o el build a case s ould ou reac ou o the police. e ore disabili a e cri e is discussed e ore i enables e disabled people who experience hate crime to talk abou i , e asises err ill enable eo le o see disabili a e cri e happen to recognise it and potentially beco e an u s ander ins ead o a b s ander And Adam passionately concludes: i eels ron i robabl is ron talk to someone such as a trusted confidan e or i , o o e olice and let them do the due diligence and the le al or because a is a e are ere o do i is no our ob o de end yourself legally.”

FOR MORE INFORMATION

Visit Leonard Cheshire (www.leonardcheshire. org) and Citizens Advice (www.citizensadvice. org.uk). If you have experienced hate crime phone your local police station, in an emergency call 999.

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Power of love: UNDERSTANDING CARE

Unpaid carers play an integral role in the lives of their loved ones, even more so during the hurdles faced in 2020. Two carers share their experiences of adapting to care and the importance of representation

REALISATION is es i a ed a ere are , oun carers across e el in o care or a siblin , aren or o er a il e ber oun carers ro ide a an as ic and co re ensi e ser ice or eir lo ed ones, bu an don ac uall realise eir roles in e o e a e e a oun carer ill is ears old and as been carin or er o er, enni er o is a eelc air user, or e las se en ears ere a e been o en s ere ill as e ri ar carer or enni er, su or in er u durin so e c allen in eal co lica ions, ic al os led o enni er assin a a on se eral occasions o e oun carers don e en no e are oun carers didn no as a oun carer un il firs ear o secondar sc ool, re eals ill erience carin

or er u s edical dressin s, ic ad o be c an ed ree i es a da , o i in ou edica ion or ensurin i e s are in reac in dis ance, ill is a illar in e o e lon side oun carers, an eo le ace a c an e in circu s ances, findin e sel es ro idin care or a lo ed one s an ac i e, eal ear old, ill used o s i u o fi e i es a ee rior o e loc do n in arc and ad or ed un il e a e o o e er, a er e eriencin a s ro e, ill is no cared or b is ear old i e, a ricia ad i nei er ill or sel ad e er en isa ed a e ould be in is s a e, e en i e are e a e e re a , e asises a ricia e re bo fi and ac i e i ca e as a s oc en e did a e e s ro e o relian on around e cloc care, a ricia is su or ed b e ernal carers o el o e ill in o is ois o e in o a eelc air, ensure e is cleaned and a en o e oile a ricia adds as o ened e es a lo o di ficul i can be as a carer or us, i can be di ficul because usband

It has opened my eyes a lot

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ere is no one si e fi s all e erience o beco in a carer e all a e our o n indi idual s ories o care en so, beco in a carer is no so e in e can e er re are or

Patricia (centre, with family) has been caring for her husband Bill

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*NAMES HAVE BEEN CHANGED TO PROTECT IDENTITIES

hates the hoist because he feels like he is out of control, he starts shaking as soon as he knows he has to get into a hoist to get into a wheelchair.” Like many carers, both Lilly and Patricia have faced obstacles when providing care.

CHALLENGES “It is harder to concentrate with my work,” explains Lilly who is currently at college. “It is easier for my mum to get me to come downstairs and help her; then I lose my focus on what I’m doing because I’m also doing college work, additional volunteering and Open Learn to help with my education.” Patricia has faced hurdles in understanding and getting support for the vital care that Bill requires. Patricia has had to get renovations in the home i doors re o ed and oors refi ed so that the home is wheelchair accessible. But, when it comes to getting help, Patricia has felt left behind. “We were thrown in at the deep end and nobody was there to throw you a raft,” emphasises Patricia. “I didn’t have a clue, everything I thought of I had to phone the doctor to ask questions.” In some instances, nurses have been unable to attend the home to care for Bill – leaving Patricia at a loss. “If Bill needs a nurse or the nurse doesn’t turn up you can contact Single Point of Access (SPoA) and you can get access to a wide range of nurses,” explains Patricia. “I didn’t have any idea about this service before becoming a carer; I didn’t actually know where the nurses came from at all.” The SPoA service is available across the UK and can be accessed from your local council.

People need to understand what it is to be a young carer

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Bill is receiving care from Patricia after experiencing a stroke

NOT ALONE

Being a carer for a loved one is a full-time role, and Alongside the challenges, it is evident that more the mental health of There are an awareness and celebration carers can be si nifican l of carers needs to be estimated impacted due to their made available after the roles and responsibilities. 7 million carers challenges of 2020. Lilly Lockdown certainly had in the UK explains: “People need to an impact for Lilly, who understand what it is to be a had to stay at home so as young carer and how much it to protect her mum who was can take a toll on people. Caring classed as vulnerable due to the impacts your mental health and I don’t ongoing pandemic. think people realise how much time “Lockdown and caring did take a goes into caring.” massive toll on my mental health, Patricia adds: “There is information because I couldn’t go out and I didn’t out there, you just need to know have college anymore,” recalls Lilly. where and who to ask.” No matter your However, receiving support from East circumstances, it is important to know Ayrshire Carers Centre has been a you are not alone. lifeline for Lilly getting to participate in group Zoom calls, music groups online and interacting with support workers whenever Lilly needed to talk. FOR MORE INFORMATION Patricia has also been supported Guidance and support can be found from Age UK and family, with her from Age UK (www.ageuk.org.uk), step-daughter able to visit Bill so that East Ayrshire Carers Network Patricia can get some respite. “I often (www.eastayrshirecarers.org.uk), say to people that God doesn’t give you Carers Trust (carers.org) and Carers UK a cross too heavy to carry, while I can (www.carersuk.org). do it, I will.”



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#YOUCANCARE Carers provide essential services to the healthcare and disability community. With almost seven million carers in the UK, the #YouCanCare campaign highlights the importance of carers in any capacity

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npaid carer to a professional care worker, carers are an essential part of the UK’s healthcare workforce and deserve recognition. Anyone can become a carer without notice if a loved one becomes ill or disabled, and the value placed on carers s ould re ec is o en di ďŹ cul ob

CAMPAIGN Many people have preconceived ideas about what caring for someone entails, and the #YouCanCare campaign is calling out to people who may not have considered a career in care. The campaign was started by Home Instead (www.homeinstead. co.uk), a care provider for the elderly, and highlights the need for caring, compassionate and loving people in care settings. oo in s eciďŹ call or eo le o might consider becoming a carer for an older person, the campaign shares stories of how amazing it is to work in care. By sharing insights from carers

on social media, Home Instead are de ons ra in o ar reac in e rewards of a care role are.

RECOGNITION Although the campaign looks to recruit care workers, it also spotlights the importance of carers more generally. The campaign, and the stories shared by unpaid carers and care workers through it, highlight the recognition all carers deserve. Throughout 2020 the key role that carers play was highlighted during the multiple lockdowns due to the coronavirus, with unpaid carers left with little respite and those in care homes put under huge amounts of pressure. This pressure continued as people were forced to shield in their homes. Carers still need more support to ensure they themselves can stay healthy; more recognition was gained when both Scotland and Wales called on unpaid carers to be prioritised for the COVID vaccine.

SKILLS No two days are the same as a carer and often carers have no experience when they take on the role, but becoming a carer can el so eone s a a o e and en o their daily life for longer. Daily responsibilities are different for every carer and depend on things like the condition of the person that you care for, what support is available to you as a carer, and where you are based. These varied experiences mean that being a carer instils a range of transferable skills that can aid you in other aspects of your life or in the future. Resilience, compassion and communication skills all co e i e ob alon side edical and support information depending on your individual circumstances. If you are an unpaid carer who cares for an elderly person, you might be concerned about what you will do after they are gone. You could become a care provider for someone else at home or in a care home, or these skills could be utilised as you follow a different career path.

Share your experience of being a carer or working in a care setting on social media with #YouCanCare

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No one wants to think about what will happen after they are gone, but for parent carers who are getting older, this is necessary. But, why is it so important to consider the future when you’re not here?

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When I’m W

ho will care for your child as you get older and after you are gone might not be something you want to consider, but for ageing parents it is important to plan. Louise Gillard runs the Parents Connect service at Scope organising informative courses for parents of children with a learning disability. “We make them aware of what will be out there for them and generally encourage them to think about what will happen when they’re not around,” explains Louise. e o or uni o find in or a ion and as ues ions is one o e ain benefi s of the course. Andrew Cooke and his wife took part in the course after their son, Isaac who is four, received an autism diagnosis. “He is quite frankly amazing, but with his autism comes some challenges in terms of his communication and how he copes with changes in routine,” admits Andrew.

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As an older parent with a young child, Andrew, who is 54, knew from the point of diagnosis that it was important to start considering what will happen in the future.

FUTURE PROVISIONS As a parent herself, Louise believes there are two main aspects to consider when thinking about your child’s future, she explains: “First of all, finances o c ec a i our c ildren are no ca able o a in financial decisions then any inheritance is taken care of, and there is someone to manage that for them. Secondly would be, what care options would be available if you are no longer able to care for your child. “Looking into provision for that now is key, whether through family or if you need o loo o ore o ficial eans The best way to ensure these measures are in place are setting them

out in a will with any money for your child and their care left in a dedicated trust. It is important to discuss di eren rus s i a solici or o find what is best for your situation. Along with wills and trusts, the support network available to your child should be considered. “I think one of the things we have noticed is that us being older means our parents are older,” reveals Andrew. “You don’t get quite as much support from family as you might do if you were younger, because others in our family are older as well as us.” Throughout the process of Isaac’s diagnosis, Andrew has realised the importance of early intervention in building a successful network around Isaac for when he is no longer able to care for him. “There will come a point when unfortunately, we won’t be around to help him and I think that’s something


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The earlier you start thinking about this it’s less of an impact

Andrew and his wife are planning ahead for Isaac’s future

you don’t want to think about, but that you have to make sure you a e ade su ficien ro ision or, stresses Andrew.

LIFE SKILLS The formalities of preparing for the future can feel overwhelming, but ensuring your child has the foundations of life skills they will need can make the transition easier when you are no longer here. “Children tend to grow up a lot quicker than we think, you blink and they will be a teen, so you do need to think about this now,” emphasises Louise. Think about the skills they might need in the future like managing money, how to check bills, prepare eals and findin su or Ensuring his son has as much independence as possible is extremely important to Andrew, he says: “As we

look to the future, we want Isaac to be as independent as he can be because being realistic about it, when Isaac is 20, I’m already going to be in my 70s.” There is a lot to consider when preparing for the future, but you don’t have to do it alone, or all at once. “Break it down even over a few months or years because a lot of our parents get overwhelmed,” advises Louise. “The earlier you start thinking about this it’s less of an impact, because you can break it down into small chunks.” Be prepared to change your plans as both you and your child age and their needs adapt.

an o er ser ices are beneficial, bu the opportunity to connect with other parents is invaluable. “Professionals can’t necessarily talk about how things work for an individual and under different circumstances, so the parents are the most valuable tool you can have,” reveals Louise. This is something that Andrew has ound e o findin ad ice and su or “Getting support from people who are going through the process is really good,” explains Andrew. “All our children’s journeys are different but we can identify with other parents and the struggles they have been through, I think there’s a certain amount of solace knowing it’s not just you.” As he ages himself, Andrew also stresses the importance of looking after your own health in order to support your child, he says: “As an older dad I certainly want to keep running around with him so I need to make time to look after myself in er s o ee in ac i e and fi “We focus a lot on doing what’s best for our children but if that’s all that we do I think we possibly miss making sure we look after ourselves as well.” With the right preparation and su or , ou can eel confiden and reassured that your child will thrive as you get older and after you are gone.

RELATIONSHIPS Having a network of professionals, family and trusted friends around you can help with these stressful decisions. Strong relationships with your child’s school, care providers and

FOR MORE INFORMATION

Scope Parents Connect (www.scope.org.uk), can help you find local support groups and connect with other parents.

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enable voices

HEARING LOSS ON THE WORLD STAGE The BBC is a respected platform reaching out to millions of people worldwide, now, one presenter is using this platform to shine a spotlight on sudden hearing loss

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djusting to sudden hearing loss is a lot to comprehend, even more so when you are chief news presenter for BBC World News. Alongside adapting to sudden hearing loss, anchor Lewis Vaughan Jones is using the World News to diminish the stigma that follows the D/ deaf/HoH community. “It was a bit of a shock, obviously, to have to suddenly be wearing a hearing aid, but I never felt any embarrassment. But, I completely understand how people can feel that way,” Lewis explains.

STIGMA “I was surprised about the level of stigma there still is around wearing a hearing aid. There is no real reason, people wear glasses, but I always felt quite matter of fact about [wearing a hearing aid].” Documenting his journey with sudden hearing loss, which Lewis experienced after a cold leaving his left ear completely without sound, on social media, Lewis saw the opportunity to change perceptions and knowledge around hearing. “People were getting in touch with me about how they felt embarrassed wearing a hearing aid when they were young. I found that really interesting,” continues Lewis. “I thought there was something slightly empowering about wearing a hearing aid on TV and being able to highlight it and not hide from it.”

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It has been gorgeous to try and normalise wearing hearing aids and wearing hearing aids EDUCATION Lewis is now trialling a bone conduction hearing aid, which he has worn whilst presenting the news and also when sending private messages to children and young people with hearing loss. “It has been gorgeous to try and normalise wearing hearing aids and wearing different types of hearing aids,” adds Lewis. “That visibility is very important for the normalisation process of people having different devices sticking out of their heads in different a s, i s all fine and nor al

ACCEPTANCE But, alongside raising awareness of

Trialling a bone conduction hearing aid

hearing loss, Lewis has had to come to terms with the fact his hearing loss and tinnitus is permanent. “Losing the hearing I, strangely, wasn’t that bothered it was the tinnitus that was the biggest issue,” remembers Lewis. After concerns he wouldn’t be able to work in television again, Lewis worked alongside the BBC tech teams, who were able to make adaptations to meet Lewis’ new needs. However, realising that hearing loss impacts large gatherings, as a big rugby fan, has been challenging. Lewis says: “I realised that this is for life and this is part in parcel of it.” Going to classes to learn how to lip read or trying to learn British Sign Language, Lewis is using this chapter in his life to be open and share that hearing loss is nothing to be ashamed of. Keep up to date with Lewis by following him on Twitter, @LVaughanJones and get further advice on hearing loss from Hearing Link (www.hearinglink.org).

Read our extended interview with Lewis over on our website, www.enablemagazine.co.uk


Individual employer funding Apply for money for training If you employ your own care and support using a direct payment from health or social care, or your own money, you can apply for money for training. The money can be used to pay for: ■ Training to develop the skills of your personal assistants and to improve your knowledge as an employer. ■ Direct cost of training and qualifications, travel costs and the cost of hiring replacement support whilst your usual PA is attending training. ■ Different types of training like moving and assisting, first aid, communication, dementia awareness, diabetes awareness, risk assessments, skills for employers, and qualifications. The closing date for applications is 28 February 2021 and any training that you would like funded must be started by 31 March 2021.

Apply now: www.skillsforcare.org.uk/iefunding1 If you have any questions or need help with the application form you can: Email: funding@skillsforcare.org.uk |

Call: 0113 241 1275

Sign up to our newsletter Keep up to date with work that’s happening, nationally and locally to support individual employers, new resources and virtual events from the sector. Sign up: www.skillsforcare.org.uk/IENewsletter1

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21/12/2020 10:52


sleep

DECODING

PROBL

Anyone can experience sleep issues, but for children with a learning disability it can be more common. Charities reveal their top tips to ensure everyone can have a good relationship with sleep

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leep disruption can affect every aspect of daily life, from concentration to mood, but sleep issues are more common for children and adults with a learning disability. Christine Muldoon is a family support worker at Mencap, she says: “Sleep issues are one of the biggest challenges facing the families I work with. Lack of slee or di ficul slee in can a e a huge effect on both the child and their families.”

DISRUPTION If a child with a learning disability is experiencing sleep issues, it can cause

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large amounts of stress for parents, carers and siblings. The more a whole family is struggling with sleep, the harder it is to manage the issues that are causing the sleep disruption. “If a child doesn’t have really good sleep hygiene, then they will be coming out of their room and disturbing their parents throughout the night and it makes it harder for the whole family to get a good night’s sleep,” stresses Carol Povey from the National Autistic Society. The amount of sleep we get affects how we think, feel and behave, making good sleep essential for good mental and physical health. For children with a


enable health learning disability, a lack of sleep can lead to increased emotional and behavioural issues, along with concerns for parents. “They may feel irritable, uncomfortable, distracted, less able to learn and retain new information during the day,” stresses Christine. “Sleep-deprived parents may struggle to effectively respond to any challenges or problems that they face.”

THE CAUSE

OBLEMS It is important for families to know that the challenges they are going through are common

In research by the National Autistic Society in association with Happy Beds, 70 per cent of people said that anxiety as e cause o eir slee di ficul ies, with more than half reporting school or work worries and 44 per cent mentioning sensory issues. High levels of anxiety affecting children’s sleep is something Carol has seen throughout her four decades or in in e au is field “As the child grows up and knows they are struggling with sleep and certainly for adults, they can spend a lot of time worrying about whether they are going to sleep or not that night,” reveals Carol. “Another area people report which is er au is s ecific is sensor issues, so it may be that things that non-autistic people aren’t particularly aware of like very small sounds happening outside, the television in the house or anything like that: if a child is hyper-sensitive to those things it may be very hard for them to sleep.” Looking for the root cause of this anxiety is an important step to solving sleep issues. If children are told to simply stop worrying without addressing the cause, it can create more worries. “It’s very frustrating when people say don’t worry when you can’t stop, for autistic people even more so, so that can be a real concern that they can’t just stop worrying or relax; the more people say i , e ore di ficul i is o ana e a , stresses Carol.

ROUTINE Solving sleep problems is unique to each individual and family, but having a set rou ine is so e in an a ilies find helpful. “Routine, routine, routine,” emphasises Christine. “A lot of the work I do is supporting families to develop a healthy sleep routine that their child understands and that they as a family can maintain. “It is so important to keep the same bedtime routine every night and consistent bedtime and wake up times –

even at weekends.” A routine to aid sleep starts before bed time with a set series of events in the lead up so children know it is time to wind down and relax. “Generally, for most autistic children routine and consistency are just king, they should have as much routine and consistency as possible,” explains Carol. “It gives a child the sense that they understand what is going on in what can be a very confusing and anxiety provoking world.” Physical or visual cues can also help. This could include brushing teeth, lights off or a bedtime story – different cues will help different children to understand it is bed time. “Bouncing, rocking or swinging can help some children who are ‘sensory seekers’ to wind down and settle, while for others this could be too stimulating before bed,” explains Christine. “The key is to understand your child and what works best for them.” Ensuring the bedroom is quiet, comfortable and has low, soft lighting can also be helpful.

HELPING HAND If you are trying to discover the root of sleep issues, you don’t have to do this alone, Christine says: “It can be exhausting and frustrating when children don’t settle at night, but it helps to have support. “It is important for families to know that the challenges they are going through are common. Many sleeping problems are behavioural, which means they can be addressed.” Parents, carers and siblings should know they are not to blame for sleep issues and that there is help available. “I would suggest keeping a sleep diary for a few weeks and advise parents that they aren’t alone, there are professionals who can help like their GP, paediatrician and learning disability team,” emphasises Christine. Every child and family are unique and so e a find i arder o ac le sleep issues. Understanding what is causing sleep issues and the best way to approach a solution can be easier with the help of healthcare professionals or charities. FOR MORE INFORMATION

Mencap (www.mencap.org.uk), the National Autistic Society (www.autism.org.uk) or visit the Sleep Scotland (www.sleepscotland.org), website which is accessible throughout the UK, for support.

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3


Placements available We provide rehabilitation and specialist education to children and young people aged 0-19 with brain injury, neurodisabilities and complex health needs. Located just south of London and set in 24-acres of beautiful woodland, our national specialist centre is the UK’s largest paediatric residential rehabilitation centre of its kind. With our children and family services rated ‘Outstanding’ by CQC and our school rated ‘Good’ with ‘excellent management and leadership’ by Ofsted, we are currently accepting placements across all areas of our service.

Key services • Brain injury rehabilitation. • Specialist education at The Children’s Trust School (residential and non-residential). • Short breaks, camps and clubs. • Step-down medical and nursing care from hospital to home. • Specialist assessment and clinical support in the community. • Online information and support via www.braininjuryhub.co.uk. For more information about our services: thechildrenstrust.org.uk placements@thechildrenstrust.org.uk 01737 365080

The Children’s Trust is inspected and rated ‘Outstanding’ by Care Quality Commission and rated an ‘Outstanding Provider’ by Ofsted Care (for residential houses). The Children’s Trust School is rated a ‘Good Provider’ by Ofsted Education. The Children’s Trust, Tadworth Court, Tadworth, Surrey KT20 5RU Registered charity number 288018. TCT_949 12/20


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REBUILDING

after

DIVORCE Divorce or separation is a challenging time for all involved, and already heightened emotions may become further frayed if you are a parent of a disabled child. Communication and working together, even when it seems impossible, is the key to rebuilding your new future

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ockdown and restrictions have been challenging for everyone across the UK and beyond during the pandemic. Spending more time with our loved ones than ever before, cracks may have begun to appear in many relationships. Challenges, highs, and lows in any relationship are normal, but sometimes cou les ill find se ara ion is e ri path to take. However, if you are parents – especially parents of a disabled child or children – there can be more aspects to consider.

IN THE FAMILY “It is all about putting the child in the iddle, firs , e asises rela ions i counsellor, Dee Holmes. “You two may be going through a separation and unhappy

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together, but you’ve got to keep putting yourself in your child’s shoes.” There are many reasons a relationship may end; it has come to a natural end or unreasonable circumstances have caused the relationship to deteriorate, even in the hardest of times communication is imperative. Dee continues: “It’s always worth people seeking some help. I’ve counselled people with a ‘what next mentality’ who left thinking they want to mend the relationship, others have decided to separate, but are in a much better place because they have had open conversations.” Elizabeth Fletcher, solicitor for Family Law in Partnership (FliP) agrees: “Try as a couple to attempt some couples therapy, because if you do decide to divorce, the more you can talk about how to best provide for your child – because nobody knows your child better than you – the better outcome.”

LEGAL SUPPORT en filin or di orce i is i or an for both parties to get legal advice. No matter if your separation is amicable or there is some tension, legal support from a solicitor will ensure everything is finalised and in ri in so ou can both start with a clean slate knowing that your child will be supported in the future. “The most important thing is that people need to get advice from a solicitor as early as possible in the separation,” advises solicitor Sarah Lilley from Brodies. “We can guide you on which methods can be used to resolve the separation. “In Scotland you don’t go to the court, quite the opposite. Family law solicitors will always try to negotiate out of court, and divorce is always the very last process. In Scotland you can’t get divorced until all financial and c ild related matters have been resolved; this makes sure that more often than not that

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everything is tidied up before we go on o e final s a es os di orce The process around separation and divorce differ to Scots Law in both England and Wales. In England and Wales you can get a divorce after being married for at least one year; in Scotland periods for a divorce differ based on the length of separation. Despite this, it is integral to put your c ildren firs , no a er e reason or separation or divorce.

BEST OUTCOME “When you have a child with a physical disability you may need to consider additional practicalities,” emphasises Dee. “Even if a child has a sensory disability you have to consider how a change in routine will make an impact. It’s about sitting down and thinking what is best for your child. “A good question to ask is: What would you like your child to be sa in in fi e or ears i e about this life experience? Asking that future orientated question can help you to think about how it will be retrospectively.” Parents of a disabled child may have additional concerns or worries that other families may not have to consider. Adapted housing can be an issue for parents who separate, with one parent continuing to live in the adapted house leaving the other to ei er find ne acco oda ion a can be adapted or negotiate a schedule to share the adapted home to facilitate the needs of a disabled child. Elizabeth advises: “If parents can’t agree on arrangements, then one parent can make an application to the court for a Child Arrangement Order, that is an order which will set out who the child will live with and when and how long they spend time with each parent.” In Scotland, there is a sub sec ion under the Family Law (Scotland) c ic can help to cover families separating with a disabled child to care for. “There is a section on special circumstances; usually

everything is divided fairly or equally, unless there is a special circumstance a us ifies an une ual di ision o property for one parent,” explains Sarah, meaning division can be amended if one parent has to keep an adapted home rather than selling and di idin e finances Divorce is an intense time for e er one in ol ed and is a si nifican life change. But, there is support on hand, from counselling, legal advice and free, impartial information online to ensue each party reaches an outcome that has everyone’s best interests at heart. Elizabeth says: “Communication is vital to provide the bespoke arrangement for your child.” Even though there may be challenges ahead, the best outcome will always prevail. Sarah adds: “You will get through this, how you feel at the start of the process will be different to how you feel at the end. The majority of my clients go away at the end of the process, no matter how long or short it has been, empowered and feeling that the right outcome has eventually been reached.”

FOR MORE INFORMATION

Family Law in Partnership www.flip.co.uk Brodies LLP brodies.com Relate www.relate.org.uk Resolution www.resolution.org.uk


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Ade Adepitan

A HISTORIC MOMENT FOR VACCINES As the first COVID-19 vaccine was rolled out in mid-December, it marked the turn in a very strange year. Our columnist Ade Adepitan discusses the most widely debated vaccine of our time

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THE CONSPIRACY accines are e o o ic o conversation amongst my circle of friends and family at the moment. I’ll admit things have got a little bit heated at times; I get why there are reservations about all of the vaccines approved by the UK’s department of health. accine co anies around e orld have achieved what normally takes fi een ears or ore o acco lis in just ten months. So, it’s only natural to an o as ues ions abou e ficac or side effects. It’s when the chatter moves in the direction of conspiracy theories that my eyes start to roll. I’ve tried very hard to bite my lip in these situations. The thing is, me and vaccines go way back, we’ve got history. I caught polio as a child after I missed out on ird and final dose o e accine, which would have protected me for life; i s di ficul or e o si on e side line when it comes to this debate. It would be easy to dismiss a lot of these theories as exactly what they are on ers o e er, e las e

“ We are witnessing

the most important moment in the history of vaccines

eah, I know, 2020 just kept getting weirder and weirder with the thought of Santa Clause bringing us a sack filled o e bri i e vaccine. Either that or lockdown defini el o o e ne ues ion, ands u i ou re oin to take the vaccine once you become eli ible on e o ern en s immunisation list? It wouldn’t surprise me if many of you were raising your arms right now, whilst at the same time feeling a certain sense of ambivalence.

years have taught me that we have to challenge misinformation at every opportunity or risk heading down very dangerous roads, that ultimately lead to a cul-de-sac of extremism.

DIFFICULT While I agree life is hard for many in the UK, especially if you have a disability; compared to a lot of the poorer nations around the world we live a life of privilege. So, we’re able to entertain conspiracy theories. We can also take a chance, roll the dice and choose not to be vaccinated,

Read Ade’s extended column over on the Enable website, www.enablemagazine.co.uk enablemagazine.co.uk

knowing there is the safety net of the NHS. Sadly, this is a luxury that millions of people around the world – especially those with impairments – do not have. I believe that right now we are witnessing the most important moment in the history of vaccines. The stakes are i , ro in sce icis o scien ific experts mixed in with a vocal anti-vax movement means there’s no margin for error. Any hint of adverse reactions or even distribution mismanagement will be catastrophic on all levels for our government, the science of vaccines, but, most importantly, the human race.

Keep up to date with Ade by following his YouTube channel, Adepifam, www.youtube.com


An inclusive show every Monday & Thursday 11am - 12pm

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Produced for and with the learning disability community Listen online: www.surreyhillsradio.co.uk The Sunnybank Trust is a registered charity. Charity number 1143663 Company number 7759018

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Creating a Brighter Future for Care Whether you’re a care giver or a care seeker, The Care Umbrella is a powerful, new online community dedicated to inspiring and supporting your needs. Presenting every imaginable UK care resource under one umbrella, The Care Umbrella also helps you to connect with like-minded people, accessible local events, care products and providers. You can even use our hub to find jobs in care. Standing together under one umbrella, our shared community vision represents an exchange of information, overcoming challenges and delivering choice.

Our Community Needs You! Now seeking new contributors to join our growing community, connect, engage and spark the care debate ‌ do you have a story to tell?

Do you have a personal experience to share, a practical care solution that will help others or an opinion on the issues surrounding care? If so, Kelsey at our news department is waiting to hear from you! Email your written contribution (in approximately 500 -1,000 words) to: news@thecareumbrella.co.uk

Contribute to our culture of care, bring your thoughts to life and start connecting through The Care Umbrella today.

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18/12/2020 15:54


enable life

NEW YEAR GOALS Friends of Enable reveal their hopes and ambitions around disability in 2021 Caroline Coster Quadruple amputee

Edel Harris CEO Mencap

n , e ci ed abou e launc o enca s ne strategy in the new year and one o oals is o e bed e ne cul ure and a s o or in i in e or anisa ion ill con inue o lobb or social care re or and or rue reco ni ion and in es en in e social care or orce and las l , an o lose a e ounds so can ear a le en a i s le a son s co is ou ndian eddin

Katie Piper

Activist, author and presenter

G oing into 2 0 2 1 I want to mak e sure I remember the lessons I learned when uarantining with my family, specifically how pausing lif e can be so healing, and how challenges and conflict can pose an opportunity f or personal growth. M irroring the changes we have all endured, my goals will not be a traditional list like stop eating chocolate’, they will reflect my desire to learn from what has been and apply this to all lif e has yet to bring. A nd naturally, as we move into a new year, we thank all of those who have helped us mak e it through – especially the N H S and all of the k ey work ers, I salute you.

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PHOTO: DAN KENNEDY

I want to learn to sew a ain i ar ificial hands and return to c ari undraisin , isi e sc ool I worked at and the hospital with our dog Duke as a therapy dog. I also hope o recei e and learn o use ne ero ar ro en ionics and o meet up with people again!


enable life

Mike Adams OBE Purple

To make 2021 the year of the disabled customer through Purple Tuesday becoming bigger and better in supporting organisations to improve the quality of service to disabled people. To encourage more organisations to see the economic and social benefi s o disabili inclusion, and to be doing something proactive with it (preferably with Purple). To retain and maintain the good habits learned through the two lockdowns and wider restrictions at both home and work. To become an even better dad to my four children and losing the ‘I’m too busy’ mantra.

PHOTO: BBC PICTURES

Mat Fraser

Writer and actor

I would like the government to fund disabled peoples’ inde enden li in , a e ore work and get better as a writer. I also want to get a decent role in a major dra a, or u o find ore riends in el en a , and a kinder to people.

Jijo Das Artist

I will always be happy and spread happiness: all my family and friends will always be smiling. I will get fully fit and stay healthy, then I can do photography projects. I will become fully flexible! I will research more about Disney and Marvel and experiment with new ideas: I am sure I will be an illustrator in Disney one day. I will explore colours and do a lot of acrylic painting, photoshop paintings, water colour, sketch new things, and practice voice-overs.

We thank all of those who have helped us make it through Jamie Brewer

Actress and model

It feels to me that we lost a whole year of face-to-face socialising with friends and making new friends. n lannin on, and e ci ed o, sicall o o all ac i i ies including hula and taekwondo. Looking forward to attending red carpet events/ premieres for the projects I’m involved with that will hopefully be released is ear, all i reall a eso e and alen ed ac ors e ci ed o s ar a e new projects this year that everyone will love! I’m hoping everyone’s 2021 is eal , a , and bac o nor al as e have missed so much.

George Robinson Actor

I hope to build on the foundations that I have tried to lay during lockdown in my personal life and use that as a springboard to get myself out

ere ore, e lore and e brace the rough and ready part of life that I feel I have not tackled as much as I could have. I also aim to keep using my platform to promote diversity and disability i in e indus r and fi or people struggling to get their voices heard. We have seen recently that there is still some work to do in not only getting stories about disability told but getting these stories told authentically. I might do a skydive as well.

Neil Ely and Lloyd Eyre Writers and directors

We are very much looking forward to 2021 especially as we will be working alongside George Webster (S.A.M/Mencap Ambassador) on e ea ure fil e ill also be running acting classes as part of our collabora ion i ac or a e ord, together we will launch The Collective Media Co that will have many unique classes and workshops that don’t separate actors with learning disabili ies, as e a e re iousl e erienced ere s no reason we should have separation in an acting workshop. Our ethos is inclusion.

JJ Chalmers

Sports TV presenter

I’m hoping the Olympics and Paralympics happen so I can take up my position as a presenter at both events. This would be a dream come true. These spectacles mean so much to the world, after the tumultuous year we’ve had they will make a hugely welcome return. On a personal level – having spent time away from my family doing Strictly Come Dancing, I’m looking forward more than anything to spending time with them before, hopefully, heading to Tokyo in the summer.

What are your goals for 2021? Let us know on Twitter, @EnableMagazine 3

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5

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reasons to get involved with

THE JUBILEE SAILING TRUST IN 2021

Through JST, Charlie is back on the water again

With 2020 behind us, many will be seeking connection and experiences in 2021. Kate Lloyd, Head of Fundraising, explains why the JST may be the organisation to help you do just that

T

he Jubilee Sailing Trust provides sailing experiences on our accessible tall ship, Tenacious. Described as life-changing, our voyages are for people of all abilities, including disabled people, those with mental health conditions or long-term ill-health issues, and the socially isolated. Here’s why we think the experience we offer may be just what you need in 2021.

1. IT’LL GIVE YOU AN EXPERIENCE WITH A PURPOSE If you want to do something meaningful, then why not consider sailing with us. You’ll be part of a Watch Tenacious is the only seagoing tall ship in the world designed, built and sailed by a mixed-ability crew

helping to run the ship. Everyone brings something different to the team - we celebrate what you can do, not what you can’t.

2. THE CHANCE TO TRAVEL We’re all itching to travel in 2021. Our voyages are taking place around the UK and from August, we’ll be in Europe. The accessible features of Tenacious make every aspect of ship life available to all.

3. COMMUNITY AND CONNECTION (BEYOND YOUR VOYAGE) We have an incredible community of individuals brought together by their love of what the JST stands for. Our voyages bring people together, but our community extends far beyond that with our branch and volunteer network. Charlie Mercer sails, volunteers and fundraises for us. She says: “I never thought I’d be back on the water, let alone become so involved in this amazing charity. The charity has had a massive positive impact on my life, and for so many others.”

4. LEARN A NEW SKILL AND PERSONAL GROWTH Because of our voyages, 97% of our voyage crew feel more certain of their ability to tackle challenges,

98% felt valued as part of a team and 94% said they felt able to achieve things they previously did not think possible. Our voyages are proven to help grow confidence, build resilience and build self-belief.

5. AN OPPORTUNITY FOR PROFESSIONAL DEVELOPMENT If you work with people with disabilities or are a carer, then there may be a role for you on board our voyages too. Sally Browne is a vision rehabilitation specialist who found the experience helpful to her professional development. She said: “Buddying up with a young man affected by sight loss, my role was to help him prepare, assist his travel to the ship and then support him throughout the voyage. Not only was my professional cap tested, I was also able to accomplish things for myself too.” FOR MORE INFORMATION

Visit our website at jst.org.uk, email info@jst.org.uk or call 023 8044 9108. Follow us on Facebook, Twitter and Instagram and join the adventure. Sail with us. Support us. Be inspired by us.

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ke Time to Talk day will ta 1 02 place on 4 February 2

Tea and talk: MENTAL HEALTH Kickstarting the conversation with a loved one about their mental health, or even to discuss how you’re feeling, can be a daunting prospect – but opening up is a critical step for your wellbeing. In 2021, it’s time to talk

1

PUT ON THE KETTLE

Time to Talk Day is an annual event working to end mental health discrimination one conversation at a time. No matter how big or small, any conversation around mental health has the power to make a big difference. If you are concerned for a loved one, or you are feeling overwhelmed, taking the time to talk about how you’re feeling is imperative. On Time to Talk Day (taking place on Thursday 4 February 2021) it’s the chance to get the nation opening up about mental health.

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TEA OR COFFEE

One in four people will experience a mental health condition each year, with one in six people reporting experiencing a common mental health problem such as anxiety and depression in any given week. Taking ownership of your mental health can start with a simple conversation, but sometimes this is the hardest step. Asking someone, “How are you?” ignites a conversation, be there to listen to the response and allow a person to have a safe, comfortable environment to discuss what they are thinking about, their concerns, and worries. Remember, nobody is asking you to be a mental health expert: you’re here to listen and show a loved one that they are not alone. Talking about mental health doesn’t have to be awkward, bein ere can a e a si nifican di erence

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ADD THE MILK

If you haven’t heard from a friend in a long time, it is important you reach out. Someone experiencing a mental health problem might start isolating themselves, use social media differently, potentially even be irritable or blunt; by staying in contact and being yourself your friend or loved one will know they are not alone. Living with a mental health condition can be very draining. With continued low moods and anxiety, it can be hard for someone to reach out. In some cases, a person may be left feeling they are a burden on friends or family. A simple text, email, call or even nipping around for a cup of tea will be very much appreciated.

CRACK OPEN THE BISCUITS

During your conversation, be mindful of how you react. There may be moments in the chat where you don’t know how to respond; if a loved one starts talking about self-harm, suicidal thoughts or ideations it can be incredibly scary and you may not know where to turn. eo le o s ar o a e di ficul in in , expressing unusual beliefs, or perceiving that things around them have changed may be experiencing early signs of psychosis. Although it may be worrying for you as a listener, allow your loved one to continue talking and ensure you don’t dismiss anything they say or do, however, don’t agree that you also see or hear something that isn’t there. Talking about suicide can also save lives. Unfortunately, the biggest cause of death for men under the age of 45 is suicide, and we need to continue talking about suicide to reduce the stigma. Make sure you don’t shy away from the topic, ask how they are considering completing suicide and why they think this is the right option. By listening and allowing your friend or loved one to talk it will show there is someone there who cares.

TOP TIP

Asking about suicidal feelings or ideations will not increase the risk of someone taking their own life. This might be an unsettling process, so if you feel the need to speak to someone after the conversation there is help available for you too.

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TALK IT OUT You’re never alone, whether you’re looking for more information, support or you are experiencing a mental health crisis, there are people and organisations on hand to help.

Samaritans www.samaritans.org 116 123 jo@samaritans.org Breathing Space breathingspace.scot 0800 83 85 87 CALM – Campaign Against Living Miserably www.thecalmzone.net 0800 58 58 58 Mind www.mind.org.uk 0300 123 3393

Crossreach www.crossreach.org.uk My Online Therapy myonlinetherapy.com TalkSpace www.talkspace.com Scottish Association for Mental Health (SAMH) www.samh.org.uk

In an emergency always call 999

FOR MORE INFORMATION

Get further advice and tips to start your mental health conversation by visiting the Mental Health Foundation (www.mentalhealth.org.uk) and Time to Change (www.time-to-change.org.uk).

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Tanni Grey-Thompson:

CALLING FOR DISABILITY SPORT SUPPORT

Photo: Getty Images

Britain’s greatest ever Paralympic athlete, Baroness Tanni Grey-Thompson writes exclusively for Enable Magazine about the important work Laureus is doing to break the barriers between disabled people and sport

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Photo: Getty Images

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LIMITATIONS We know that being active is really good for your mental health and wellbeing, as well as your physical health. As the winter months take hold, i is beco in increasin l di ficul or young people to undertake exercise that would have been easier in better weather and on lighter days. The lack of access to sports facilities such as gyms and swimming pools have had a damaging effect on mental and sical eal , i e benefi s a they provide to ease the pressure on health services. Mental health is particularly being c allen ed as eo le find e sel es more isolated and the absence of opportunities for physical activity means that those with a disability miss out on sport which in many instances is a lifeline for them.

ENGAGED course, i is abou e in fi and having fun, but for those who are mentally disabled, they need the su or and benefi a or anised sports activity can bring. It gives them not only the social interaction that they desperately need, but also a sense of belonging that they do not get elsewhere – and in some cases they do not understand why their access to sport has been denied. Engaging with peers is fundamental for those with mental disabilities, who also learn valuable life skills that boost eir confidence, eal and enable them to make friends. Sports activity also relies on repetition for those with mental disabilities, because they can easily forget rules and sporting principles if they do not have regular training, game sessions and the specialist attention they require that they simply cannot get at regular school PE sessions.

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EMPOWERED

Tanni Grey-Thompson at a Laureus event

For those with physical disabilities, accessible facilities are also a problem, both in lockdown and where more stringent social distancing and limited classes are concerned. Research by Sport England* shows that the number of disabled people who are regularly active stands at 23 per cent, compared to 31 per cent of the wider population. It could be argued that people with disabilities are being penalised because they need access to sports facilities and grassroots sport the most.

EMBRACING SPORT At Laureus – a global organisation celebrating sporting excellence whilst using sport to transform the lives of children and young people – Inclusive Society is one of the six Social Focus Areas towards which we provide funding and support to enable programmes to tackle, aligned to the United Nations Sustainability Development Goals (SDGs). We have two decades of experience and understanding of the frameworks and soft skills required to create a society where young people and children embrace physical and mental differences and can thrive through sport. We have to be really mindful that, as a Foundation, we have to support and make sure that the projects and young people come out of this in the best shape that they possibly can because those projects ultimately save lives. We need to remember that sport brings young people together, it gives them an opportunity and a chance to think differently about themselves, to think differently about the decisions they make and how they want to live their lives. And that is what sport and Laureus does. It gives young people the chance to think differently.

Delivered in partnership with Allianz and InsightShare, we recently commissioned a report entitled Empowering Abilities through Sport, which showcased the real-life experiences of disabled young people from Ethiopia, Thailand and Jamaica, o a e benefi ed ro e su or In each and every case, we have seen marked changes in their attitudes, eir confidence and eir abili ies o communicate. Sport can provide that in ways, to quote our Founding Patron Nelson Mandela, that nothing else can. Sport is unique in its ability to bring people together and break down existing barriers of discrimination and it’s no exaggeration to say that lives depend on it. As well as ensuring grassroots sport remains open and accessible, we must not forget about elite disabled athletes o a e ad a er di ficul ear dealing with the postponement of the Tokyo 2020 Paralympic Games.

PARALYMPICS For many competitors, Tokyo was the culmination of four years of hard work and to be prevented from doing the job that they love will undoubtedly impact their mental health and wellbeing. Another concern is that some Paralympic athletes may have underlying health conditions or issues that will prevent them from competing in a rearranged Games. I was lucky enough to compete at four Paralympic Games and few other events could replicate the thrill of representing your country on the biggest stage of all. I’m hopeful that fans will be able to attend the Games in Tokyo because they are a key part of what makes it such a special part of the sporting calendar. We also shouldn’t underestimate the importance of young people seeing their role models competing, to help inspire and give them the belief that e can e e sa e ulfil en ou o competing at the sports they love. FOR MORE INFORMATION

Baroness Tanni Grey-Thompson is a Laureus Academy Member, discover more about Laureus and the work they do by visiting, www.laureus.com

*www.sportengland.org/news/surge-appreciation-exercise-and-activity-during-lockdown

ockdowns across the world have been hard for us all. Our ‘normal’ way of life has changed immeasurably as governments and societies attempt to stem the level of infections and deaths from COVID-19. In many areas of the world, these lockdowns have meant limits on social interaction, limits on leaving our own homes and additionally limits on organised grassroots sport.


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disabilityevents From virtual courses to exhibitions, here are our pick of disability events this January/February and further into 2021 to add to your diary

COURSES ENGAGING WHEELCHAIR PARTICIPANTS IN SPORT 20 January WheelPower

www.wheelpower.org.uk

is course or coac es, s or s s uden s or wheelchair users who want to learn ore abou ada in s or s sessions ill ro ide ou i ideas or sessions usin bo eor and rac ical ele en s

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Available now National Autistic Society

www.autism.org.uk

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Available now National Autistic Society

www.autism.org.uk

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WORLD BRAILLE DAY 4 January esources a ailable ro

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World Braille Day is a chance to raise awareness of the issues i ac in eo le o are blind or isuall i aired and o celebra e e in en ion o braille e da is celebrated on 4 January because it is the birthday of Louis raille o crea ed e ac ile ri in e od

BREW MONDAY 2021 18 January

www.samaritans.org eelin alone i our roble s can a e a bi i ac on our en al eal , a s i s i or an o reac ou o ose around ou e our lo ed ones o e er ir uall or a cu a, a c a and a biscui is anuar

FUNDRAISING GO BRIGHT FOR THE FIGHT 2021 5 February Muscular Dystrophy UK

www.musculardystrophyuk.org Join in on the brightest day of the year to raise awareness o e need o find be er rea en s and cures or uscle wasting conditions. Don’t forget to share your photos on social edia usin ea ran e

AMBITIOUS ABOUT AUTISM VIRTUAL CHALLENGE SERIES Available until October 2021

www.ambitiousaboutautism.org.uk

Thursdays throughout January Carers Network

e er i s co le in , , c clin or a ill cli b, ere s len o c oose ro in is ir ual c allen e series unnin un il c ober , e series i es ou e o ion o do our c allen e, our a

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If your goal this year is to pick up a ne obb , is is our c ance au o er oo , is c air based exercise is easy to follow and can be done a an i e, an ere i benefi s or bo our sical and en al eal

EVENTS THE LEARNING DISABILITIES CONFERENCE 2021 FAKEAWAY FEB

February 2021 Diabetes UK

www.diabetes.org.uk

urb our a ea a cra in s and sa e oursel so e pennies while taking part in FakeAway Feb with Diabetes i lo s o reci es o c oose ro ou can re crea e our a ouri es a o e bu in a eal ier a

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AWARENESS

26 January nside o ern en

www.insidegovernment.co.uk is online con erence, sec or leaders ill e lore e ne s e s in i ro in care ou co es and ser ice deli er or adul s i learnin disabili ies and au is is ill include an assess en on e i ac o e crisis and o ser ices s ould res ond

ALL INFORMATION CORRECT AT TIME OF PRINT.


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CRAFTS Immerse yourself in painting, making music, knitting or creating cards. Getting crafty – even if you think you don’t have an artistic bone in your body – is a wonderful way of self-expression, clearing and focusing your mind. Etsy (www.etsy.com/uk) has a wide range of arts and crafts products available to purchase, not to mention you will be helping independent businesses. From embroidery kits where you can stitch intricate designs or more minimalistic designs if you have mobility issues, to getting paper to create your own cards: when it comes to arts and crafts, the world is your oyster. Take inspiration from LoveBraille (www.lovebraille.com), a small company which started out of frustration of the limited choice in braille greeting cards, and Chr0nically Cute o , ic ea ures disabili s ecific e broidered o es to watercolour cane book marks, your artistic expression could become a business before you know it. Or enjoy your creations at home, as gifts, or as your time to relax and get creative.

hobbies Hello

No matter if you started a new hobby way back in the first lockdown, have always wanted to try a specific activity, or want to try something new for 2021, there is a hobby to fill any interest throughout the day

OUTDOORS As we prepare for the warmer months ahead, there is a lot to enjoy in the great ou doors ee i ou e o reen fin ers and beco e a lan aren and en o so e ardenin o a er i ou a e a ide rollin arden or li e in an inner ci a, there are many ways to enjoy the soothing effects of gardening. The Gardening for Disabled Trust (www.gardeningfordisabledtrust.org.uk) is a fantastic organisation encouraging more disabled people to get back into ardenin , or e en r in i or e firs i e ro idin ran s so a ardens can be adapted to meet your needs, or if you discover a new passion, there are a range o ada ed roduc s a ou can urc ase o brin our sun o ers, roses, s ider plants and beyond to bloom. During lockdown walking and getting some daily outdoor exercise was a lifeline. Take this into 2020 by making the most of the accessible nature reserves on offer across the UK. The Wildlife Trusts (www.wildlifetrusts.org) is committed to ensuring that limited mobility doesn’t mean you have to miss out on nature. Come rain or shine, there is an accessible Wildlife Trust reserve for you to enjoy a nature al in our local area n o colour ul ild o ers, beco e one i na ure and spot some wildlife, with accessible trails and facilities on offer.

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SPORT It’s set to be a big year in the world of sport with the rescheduled 2020 Tokyo Summer Paralympic Games hopefully set to take place. So, what better time to discover a new hobby (and get active in the New Year)? From wheelchair basketball, adapted tennis, to powerchair football and Boccia – you name it, there is a sport that you can get involved with. Release your inner Andy Murray with the Tennis Foundation (www.tennisfoundation.org.uk), as tennis beco es one o e bi es disabili s ecific s or development programmes in the UK. Regardless of your skillset or disability, tennis can be widely adapted to ensure everyone can serve in a sport they love. If you’re looking for some more adrenaline and speed, Team BRIT (hwww.teambrit.co.uk) is working to ensure motor racing is accessible for the disabled community. Team BRIT offers unique opportunities for disabled drivers that have never been available before; backed by drivers Nicolas Hamilton and Billy Monger, disability is no longer a barrier to speed. This might even be the perfect time to consider learning to drive to add fuel to your new passion.

LEARNING VIRTUAL CLUBS Even if you’re not ready to head outside – or you are experiencing further local lockdowns or restrictions – there is a range of virtual clubs and hobbies you can enjoy and get involved with. Love nothing more than getting lost in a good book? Gather a group of friends and start your very own virtual book club. Not only will you get to enjoy escaping in the latest must-read book, you can communicate with your friends. Inspire Online Book Club (www.inspireculture.org.uk) also run monthly book club events, recommending a title from their collection of eResources, available in eBook and eAudiobook – this is a great chance to meet other likeminded people, too. For little ones, Club Hub (clubhubuk. co.uk) provide a wide range of online classes and activities for kids of all abilities that range from singing, experimenting with household items during science club all the way to learning how to draw and becoming a coding expert – there really is a club for every mood. anis boredo in , and di e ead firs in o activity or venture out of your comfort zone to try so e in ne e ardless i ou find our nic e and our obb ouris es in o a s or in success or business venture, or you enjoy a hobby to take you away from the hustle and bustle of life, there’s no denying the impact a good hobby can have on your wellbeing.

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Hobbies are all about relaxing and doing something you enjoy, but that doesn’t mean some additional skill building can’t be added to the list. Over the festive period, leading deafblind charity Sense (www.sense. org.uk) released a series of videos featuring 15-yearold Tyrese teaching people festive words in British Sign Language (BSL). If you want to put your language learning skills to the test, british-sign.co.uk have fun and effective courses online where you can learn BSL. Or, prepare to enjoy Diabetes UK’s Fakeaway Feb and get into the kitchen to cook some delicious meals for you and the family. No matter if it’s homemade soup, or your take on the infamous lockdown banana bread: cooking can be incredibly relaxing, improve mental health and wellbeing, not to mention you can get a sense of pride as you tuck in.

What new hobbies have you started in 2021? Share with the Enable Community, @EnableMagazine


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Tim Rushby-Smith

Make politics civil again The Presidential campaign between Joe Biden and Donald Trump affects everyone worldwide. Tim Rushby-Smith writes about a President’s power to change perceptions through language

“W

e must make the promise of the country real for everybody — no matter their race, their ethnicity, their faith, their identity or their disability.” So said Joe Biden (U.S. Presidentelect at the time of writing), triggering a huge outpouring of joy across social media from people with a disability, many observing the rarity of disability being included in such a list by people in authority.

POSITIVE LANGUAGE I hope the inclusive language signals an end o e in a a or r e oric and posturing favoured by the previous incumbent, Donald Trump: The man who mocked journalist Serge Kovaleski for his disability (Kovaleski has arthrogryposis, a condition which affects his joints). The election campaign itself was telling, with Trump taking every opportunity to seize on any verbal

stumble by his opponent. The slightest slip was seized upon (Fox News even made a montage, and joked about the ‘perilous journey from Joe Biden’s brain to Joe Biden’s mouth), as proof a iden as unfi o o ern Yet Joe Biden is one of three million Americans who lives with a stutter, a neurological condition that he spent many years learning to overcome, or at least mitigate. It has no relevance o e er e is fi o a e o fice as President of the United States. Unfortunately, such differences were unlikely to be given respectful airing.

UNCERTAINTY Politics is a rough game. But the rhetoric employed by those in high o fice can do uc o s a e ider social attitudes and impact on the everyday experiences of the rest of us. When someone in authority ‘punches down’, choosing to highlight differences in their opponent in a way intended to imply incompetence,

they help to make others view such behaviour as acceptable, and hate speech is rarely far behind. Trump has always been a keen exponent of the ‘dead cat’ strategy in politics. The method is simple. You throw a dead cat on the table and everyone stops talking about whatever damaging topic they may have been discussing and instead shifts their focus to the dead cat. While this is an effective distraction, it also leads to a slide away from basic human decency. We are living through a time of great uncertainty with more fear an inevitable consequence. When people are scared, e end o find co or in a e see as their own tribe. But when that is accompanied by sneering hostility it is never a force for good. en eo le in i o fice use e language and tactics of the playground bully, no matter who the intended target is, we are all worse off.

Those in high

“ 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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Miscarriage can be shocking, upsetting and confusing, and with extra barriers to information, it can be harder for women with a learning disability to understand what has happened. Emma Storr speaks to The Miscarriage Association about what women with a learning disability should know and where to find support

MISCARRIAGE & LEARNING DISABILITY: Accessing Information

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A

miscarriage is when someone is pregnant and the baby dies, this isn’t anyone’s fault and affects about one in every four pregnancies. In many cases, a miscarriage happens quite early on in the pregnancy, but it can happen later too: baby loss up to six months of pregnancy is considered a miscarriage. This time can be harrowing and confusing for anyone affected by the iscarria e, bu findin su or and in or a ion can be es eciall di ficul for women with a learning disability.

UNDERSTANDING If you experience a miscarriage, understanding what has happened and what you can expect both physically and emotionally is important. The physical symptoms of miscarriage, which include pain and bleeding, can be very upsetting and may last for days or weeks. If you, or the person that you support, thinks they are experiencing a miscarriage, it is important to call your GP or a midwife if you have one. Ruth Bender Atik is national director at The Miscarriage Association (www. miscarriageassociation.org.uk). The charity offers support and information to anyone affected by the loss of a baby in pregnancy. “Women talk about it feeling like being in labour and having contractions,” explains Ruth. “It can also just be really exhausting because even once you stop bleeding it’s very tiring to lose a lot of blood, you may need a few days for other people to help look after you.” It is important to get plenty of rest and to eat properly after a miscarriage, it can take a great emotional toll as well as being physically exhausting.

EMOTION No matter what has happened, remember that a miscarriage is not your fault and there is no time limit to feeling upset about this loss. “Loads of women blame themselves, they think it’s something that they did, something they forgot to do or didn’t do, and that just really isn’t why it happens,” emphasises Ruth. After a miscarriage, you might feel sad, shocked and confused, angry, lonely or panicked. It can help to talk to

somebody that you trust about how you are feeling. “When looking for support, you have to think about who would you talk to if you had a problem,” says Ruth. “Everyone is different, but most people tell us that what makes them feel better is being listened to.” Some people might not know what to say or the best way to support you, and in Ruth’s experience, they can sometimes say upsetting things if they don’t understand you are upset. “Not everyone understands and it’s sometimes hurtful what people say; it can be things like you weren’t ready for a baby,” explains Ruth. “Some people just don’t understand how upset you can be.” If you experience a miscarriage, it doesn’t mean that you can’t get pregnant again in the future, Ruth explains: “It’s important not to have sex when you’re still bleeding because you can get an infection more easily, after that, the time to try again is when you feel ready, physically and in your heart. “Having a miscarriage doesn’t mean you’re going to have another one, you might, but it’s more likely that the next re nanc ill be fine, e asises Ruth. “If you’re pregnant again tell your doctor or midwife that you had a miscarriage before and you feel a bit scared, that’s normal.”

BARRIERS ro di ficul findin eas read information to being unable to access many healthcare settings independently, additional barriers to information exist for women with a learning disability looking to understand miscarriage. These barriers start in hospitals where doctors often don’t have the time to explain in depth what is happening. “It is true for many women they have to search for information because they are not given it, still hospitals don’t often i e ou lea e s or in or a ion, e deal with a patient then another and another,” reveals Ruth. “You would hope that there was time to explain but that doesn’t always happen. can be di ficul o e a information anyway,” continues Ruth. “If you’ve got a [learning] disability that a es i ore di ficul or ou o searc for these things.” Even when a doctor, nurse or other healthcare professional takes the time

to explain what is happening, it can be hard to remember this once you are at home. This is what makes the availability of adapted information so important. “You sometimes remember how people were, if someone was being kind or impatient, but don’t often remember information because we are too shocked to take it in,” sympathises Ruth. “Having it explained at the time and also having either information written down, information in pictures or a phone number to call, all of that can help.”

EASY READ The Miscarriage Association has crea ed an eas read boo le on miscarriage for women with a learning disability, but this isn’t carried by all GPs or hospitals. Before it is, there has to be more awareness of people’s needs. “I think it does go back a stage, you want everyone to know what the issues are with learning disabilities and visiting the hospital or a GP,” stresses u ou a e ore di ficul bein understood, you would hope that all health professionals have a level of understanding that you may need more help.” Many of these barriers stem from a lack of understanding, and a stigma that wrongly still exists around disability, sex and parenthood. “I always think surely there can’t still be people who think that people with disabilities don’t have sex or have babies, but maybe we aren’t past that stage yet,” admits Ruth. “You want them to have that ping in their mind when they see someone with a learning disability, just as they would with someone who is visually impaired or D/deaf/HoH and know they need to find a resource a e can use, i s raising awareness of people’s needs.” Only when this stigma is diminished, and healthcare professionals have apt training on learning disabilities, will this necessary information be readily available to everyone.

FOR MORE INFORMATION

Further advice and support, or to find easy read resources s a a la le from The Miscarriage Association (www.miscarriageassociation.org.uk) on 01924 200799.

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Get

energy efficient January is a challenging month, it’s dark, cold and, let’s face it, a little bit miserable. But, this Big Energy Saving Week 2021, it’s time to take control of your spending to save and sit comfortably and warm

I

n a bid to help people cut their energy bills, Big Energy Saving Week is an annual campaign to eradicate energy debt and ensure eo le e e financial su or e are entitled to. Funded by the UK and devolved Scottish and Welsh governments, Big Energy Saving Week runs a range of events to reach people who may not be aware of the support available to them. And, it works! In 2018/19, Citizens Advice and the Extra Help Unit delivered £1.3 million in savings to people with network energyrelated issues, saving £232 per case. This year, you could get saving, too.

HOW TO SAVE It’s easier than you think to save. From spending less time in the shower to turning lights off when you’re not using them, changing bulbs with energy

To ensure you get the best deal for your circumstances it’s best to shop around enablemagazine.co.uk

e ficien s, and u in our ea in on a i er can all a e a si nifican difference in how expensive your bill is. Reassessing who your gas and electricity bill is with can also make a si nifican i ac

bill price rises you’re free to leave – it’s important to look around for the best deal.

SHOP AROUND

To ensure you get the best deal for your circumstances it’s best to shop around and see what company (big or small) will THE BIG SIX ro ide o find cos s a si ell There are a wide range of within your budget. energy suppliers across the Each energy provider , i ri is as, Big Energy will provide a price Energy, E.ON, Npower, comparison on their Saving Week will Scottish Power, and SSE website, or you can use take place from – known as the Big Six – the energy comparison 18 to 24 January do ina in e field o as service from Citizens and electricity suppliers. Advice (energycompare. 2021 But, bigger doesn’t always citizensadvice.org.uk). This mean better. Switching energy is a free service, and all you will supplier can be on the top of needs is the name of your supplier our o do lis , e en so, i can be di ficul and your tariff – this will be present on o s i c and find e ri co an o your energy bill. commit to. That’s where smaller energy The comparison will provide nocompanies come in, plus, you could save a obligation quotes from a range of energy lot of money by switching. providers who you could save money Bulb (bulb.co.uk) and Octopus Energy with. Remember, if you’re not happy (octopus.energy) are just some of the with a quote there is no obligation to energy companies launched to challenge accept it. the Big Six. Not to mention, the smaller Time to get saving. companies are committed to providing greener energy and Bulb provide their FOR MORE INFORMATION bills in an accessible format including Learn more about saving from Energy Saving braille. Trust (energysavingtrust.org.uk), Citizens Although a smaller energy company Advice (www.citizensadvice.org.uk), and will certainly provide some variety Money Super Market and reduced charges – and they come (www.moneysupermarket.com). without a contract, meaning if your


A collection of 1-3 bedroom wheelchair accessible Shared Ownership homes, moments from Hounslow West Underground Station* Contact:

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SET UP HOME IN CRYSTAL PALACE A collection of ground floor one and two bedroom apartments for shared ownership Coming soon to Beulah Hill in Croydon KEY FEATURES: Wheelchair adaptable throughout Spacious private terrace Allocated parking space Fully-fitted kitchen with integrated appliances Shares available from 25%

Register your interest today at moathomes.co.uk/Beulah-Hill Eligibility criteria applies. In line with government priorities, priority for shared ownership homes at Moat is awarded to people who are serving Ministry of Defence (MoD) personnel. Priority will be given to people who live or work in Croydon. Applicants must have an income (joint or single) of less than £90,000. We welcome applications from everyone and will try and help you if we can.

CROYDON WWW.CROYDON.GOV.UK


HOME, SWEET, ACCESSIBLE HOME Coming home should elicit feelings of comfort and safety, but for many disabled people homes are inaccessible and don’t meet their needs. Here we look at how you can ensure your house can become a home ADAPT FOR YOU

Only 7% of homes in England are accessible

There are many small to large adaptations that can be made to a home to ensure it meets everyone’s needs. From lower work tops and cookers, space for a wheelchair to adapted products around the ouse ere is a ide ran e o disabili s ecific equipment that can be incorporated into your home. In the bathroom you could have a chair with a hidden toilet, known as a commode, if you struggle getting to the toilet; raised toilet seats alongside easy push buttons if ou a e obili issues causin ou o find us in e oile challenging. With a UK based team, and a wealth of experience in the shower toilet industry, Geberit (www.geberit-aquaclean.co.uk/ care) offers not only excellent service but also a revolutionary and reliable product. Their specialist team are available for consul a ions bo be ore e oile is s ecified and a er installation to help with any questions. You can hire adapted products from a range of locations including Mobility Hire (mobilityhire.com), Independent Living (www.independentliving.co.uk) and Better Mobility (www. bettermobility.co.uk).

HOME ASSESSMENT If you require additional assistance around the home it is imperative you ask social services for a home assessment (www. o u or needs assess en ou ill be assessed o find ou i your needs meet the eligibility criteria, and if you are found to

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meet the right criteria this means your local authority has a duty of care to discover what you require to successfully carry out daily tasks. An occupational therapist (OT) may be required to be present for your care if you have a need for s ecific disabili e ui en or ada a ions needs assessment is available in England and Wales with services covering home care such as cleaning and shopping to respite opportunities.

GET FUNDED ere is a ran e o benefi s a ailable or disabled eo le o ensure their homes are accessible and affordable. After a home assessment you may be eligible for some funding to adapt your home. Your local authority is not allowed to charge you for the services of a minor adaption or specialist equipment if it costs £1,000 or less. However, if you require more intensive adaptations you may be eligible for a Disabled Facilities Grant (DFG). This grant is suitable if you need to widen doors and install ramps, improve access to rooms via stairlifts or install a new bathroom, to improving heating systems. The amount of funding you get depends on your household income and savings over £6,000 and you could get up to £30,000 in England; £36,000 in Wales; £25,000 in Northern Ireland. If you’re living in Scotland (www. gov.scot) visit your local council to learn more about the funding you are eligible for. Top tip: on a ec an benefi s ou e


enable housing

PRODUCT PICKS TALKING MICROWAVE

RNIB, £185 exc VAT

shop.rnib.org.uk

Complete with tactile buttons, the fully talking microwave oven has been designed by RNIB with ease of use in mind. Available with ad us able olu es, fi e coo in odes, e icro a e oven also has safety in mind. When opening the door, the microwave will say “door open, beware hot contents” and you will also be told when the door is left open.

HIVE STARTER PACK Hive, £129

www.hivehome.com

The Hive is the future at home, alongside Hive Heating there are a range of products that you can purchase to take your home to the next level. The Hive starter pack will see you being able to turn lights on, off, or put on a dimmer, control appliances plugged into the Hive plug socket, not to mention knowing when your door has been opened with a security sensor all through an App on your phone.

THE BIG MOVE At present we are living in a housing crisis for disabled people, i an unable o find accessible or ada ed o es o ren or buy. When moving home with a disability or if you care for someone with a physical, sensory, learning disability or mental health condition it’s important to take into consideration what adaptations you may need. Thankfully, there are some services and estate agencies a s ecialise in el in disabled eo le find e ri property. Branch Properties (www.branchproperties.co.uk) are s ecialis s in finin and ro idin accessible ro er ies or bu ers and ren ers loo in or a s ecific acco oda ion Available to discuss a full assessment of requirements you may have, size of property sought after including location and budget, Branch Properties also handle all negotiations when ou find ou er ec a c PLG (www.plg.uk) Disability Property are also committed o ensurin e c allen es disabled eo le ace en findin a property are a thing of the past. Prime Location (www. primelocation.com) are another organisation working to help ou find our drea o e i e ri undin , ada a ions and support you’ll be one step closer to comfort.

BATWING PILLOW AND COVER Complete Care Shop, £26.20 inc VAT

www.completecareshop.co.uk Providing support for the lumbar area when you’re sitting up in bed or in an armchair, the pillow is well padded. The wings provide additional lateral support, keeping users cradled in a comfortable, healthy position.

AMPLIFIED TELEPHONE Clearsound, £67.80 inc VAT

www.themobilityaidscentre.co.uk is bi bu oned one is desi ned s ecificall or people who struggle to use a conventional phone. Hearing aid compatible with nine direct phone number memories and three emergency memories, the phone has an adjustable ringer volume and tone with bright visual ringer iden ifica ion

FOR MORE INFORMATION

Disability Rights UK www.disabilityrightsuk.org Living Made Easy www.livingmadeeasy.org.uk Scope www.scope.org.uk UK Government www.gov.uk

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0300 3033 517 www.fundraisingpreference.org.uk/learn

Are you or someone you know receiving unwanted charity communications? There’s a free and easy to use service that can help you end contact. Use the FPS today.

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The Fundraising Preference Service is on hand to help you, or someone you care for, put a stop to unwanted marketing messages from charities

STOP UNWANTED CHARITY MARKETING Y

ou may have received messages from charities over winter as the festive season is a busy time for charity fundraising – you may have even donated. Charities contact members of the public by email, post, telephone or text to generate support for their cause. And when people are contacted with a request for a donation, they tend to be very generous. However, if you or someone you know no longer want to hear from charities, even if you have donated to them in the past, there is a free and easy to use service that can help you put an end to this type of contact – the Fundraising Preference Service.

YOUR PREFERENCES The Fundraising Preference Service (FPS) is the UK’s only service that allows you to manage the contact you receive from all registered charities in England, Wales and Northern Ireland.

If you no longer want to hear from charities, there is a free and easy to use service to end this type of contact You can access the FPS online or by phone and it is completely free to use. It is run securely by the Fundraising Regulator, the independent regulator of charitable fundraising. More than 10,000 people have used the FPS to put a stop to marketing contact from charities and many people have used it on behalf of a

friend or family member. You can also use the service even if you, or someone you care for, have previously given consent to the charity to stay in touch.

EASY TO USE By using the FPS, you can end contact with multiple charities at the same time – all you need to know is their charity name or registered charity number. Although you can contact individual charities directly to ask them to stop sending you fundraising appeals, using the FPS means you don’t need to contact them all separately. If it sounds like the FPS will be of help to you or a friend or family member, visit their website for more information about how the service works.

FOR MORE INFORMATION Visit www.fundraisingpreference.org.uk/learn or call the Fundraising Preference Service on 0300 3033 517. The FPS helpline is open Monday to Friday between 9:00am and 4:30pm (closed weekends and public holidays). Calls to 03 numbers cost no more than calls to local or national rate numbers (01 or 02) and should be included in inclusive minutes in the same way.

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WIN

A GOOGLE HOME Organise the year ahead by entering our brilliant competition, where you could win a state-of-the-art Google Home

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egain your independence with the help of the top hands-free assistant on the market: Google Home. Accessible technology is the future, and the Google Home is the leading product on the market providing vital support to people living with a disability. This issue, we’re giving one lucky winner their own Google Home! Google Assistant, the smart assistant behind the Google Home, allows you to take control of your day, all through voice control. Simply say, “OK Google, what does my day look like?” and everything from the weather to a reminder for your next Zoom quiz will be relayed to you. From news bulletins to playing your favourite music and medication reminders – the Google Home is guaranteed to leave you feeling in control. As you plan socially-distanced walks with friends and family, your Google Assistant will ensure you know your plans ahead of schedule. The Google Home is the perfect product for people

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living with a disability as it provides an excellent source of companionship and support. Plus, with a simple voice command, you can enjoy entertainment such as radio, podcasts, music streaming and more. The world of entertainment has never been more accessible thanks to the Google Home. Daily chores and tasks are no longer a hardship as the Google Home allows users to get help from the Google Assistant by setting alarms to providing recipes. With your permission, Google gets to know what matters to you. ura in dail in or a ion s ecific o your needs, Google Home can share your diary in seconds, meaning all of your appointments can be stored in one handy place, with reminders of when to leave for them! All this plus the stylish, sleek, and innovative design of the Google Home means it is a product that will put ease back into your daily life, whilst looking good. It’s time to meet your Google Assistant.

HOW TO ENTER To be in with the chance of winning a state-of-the-art Google Home, simply send us your name, contact details and where you picked up your copy of Enable to competitions@dcpublishing.co.uk quoting Google Home. Or visit the Enable website and enter online at www.enablemagazine.co.uk/googlehome21 All entries must be received by Monday 1 March 2021. Good luck!

TERMS AND CONDITIONS: All entries must be received by Monday 1 March 2021. The prize is one Google Home only, which will be posted to the recipient directly. The prize in non-transferable, non-refundable, there is no cash alternative and cannot be sold to another party. One entry per household. The publisher’s dec s on s final


The Motability Scheme enables disabled people to lease a new car, scooter or powered wheelchair without the worry of owning and running one. Parents and carers can drive on behalf of the customer. The vehicle should be used by, or for the benefit of, the disabled person.

Making life easier for disabled people

“We went on our first family camping trip. Something we couldn’t have done without the new car.” Sam, Elisabeth’s mum

Who can join the Motability Scheme? You may be eligible to join the Scheme if you receive one of the following: • Higher Rate Mobility Component of Disability Living Allowance (DLA). • Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP). • War Pensioners’ Mobility Supplement (WPMS). • Armed Forces Independence Payment (AFIP).

What’s included on the Motability Scheme? Insurance Breakdown assistance Servicing and repairs

How Motability, the Charity can help We can provide charitable grants for: • Car adaptations to help make travelling as comfortable as possible. • Vehicle Advance Payments for larger, more expensive vehicles. • Up to 40 hours of driving lessons, to ensure disabled people have access to driving tuition in specially adapted cars as necessary.

To find out more visit motability.org.uk/sen or call 0800 500 3186

Tyres and battery replacement

To find out more about the Motability Scheme visit motability.co.uk or call 0800 093 1000 (quote SEN)

11651_Motability_Sen_Advert_UPDATE_V3.indd 1

Motability is a Registered Charity in England and Wales (No.299745) and is authorised and regulated by the Financial Conduct Authority (Reference No. 736309). The Motability Scheme is operated by Motability Operations Limited under contract to Motability. Motability Operations Limited is authorised and regulated by the Financial Conduct Authority (Reference No.735390).

03/08/2020 17:59


REVIEW

KIA NIRO The Kia Niro comes with various power options to make it clean and green, and it’s also just a very good car, writes Alisdair Suttie

INSIDE There’s no faulting the Kia Niro’s quality and this impression is furthered by the stylish dash display and central infotainment screen, which has a large 10.25-inch screen in all but the base 2 version. It’s a shame the ventilation and stereo controls use too many buttons, but they are easy to work. There’s plenty of adjustment in the Niro’s steering wheel and this is matched with the driver’s seat movement. From the 3 trim and up, there’s electric

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seat adjustment and heating for the front passengers, meaning we’re leaning towards this as the Niro to have. Taller drivers will have no trouble getting comfortable and there will still be more than enough room in the rear seats for adult passengers or to stow a wheelchair. The boot is shallower than many crossovers, but the Niro can still cope with a wheelchair and the oor s ei a es i eas o li heavy items in and out.


enable motoring

From the 3 trim and up, there will still be more than enough room to stow a wheelchair

You can get the Kia Niro for the cost of your total Mobility allowance on weekly rental. For more payment options visit, www.motability.co.uk

EQUIPMENT Starting with the 2 model, the Kia Niro comes with 16-inch alloy wheels, rear privacy glass, cruise control and air conditioning. It also has all-round parking sensors and reversing camera that shows in the 8-inch infotainment touchscreen. The 3 adds electrically adjustable and heated front seats, heated steering wheel, and all-round electric windows. It also has the larger 10.25-inch infotainment screen. Choose the top level 4 and you’ll enjoy ventilated front seats to cool on a hot day, heated outer rear seats, and keyless entry and starting for added convenience. The 4 also has Led headlights, but all Niro’s are generous in the amount of safety kit they come with as standard, including collision avoidance and blind spot detection systems.

DRIVING The hybrid and plug-in hybrid (PHEV) versions of the Niro use the same 1.6-litre petrol engine. There’s also a fully electric model, though this isn’t available through Motability at present. The Hybrid has a very short electric-only range, so if you want to drive emissions-free in town then you really need the PHEV that can cover up to 30 miles on a charge. In this mode, it runs silently and recharging is easy with the in-built socket. Other than that, the two hybrid Niro’s drive in a very similar fashion. Neither is especially quick off the mark, but they work their ways through the standard sixspeed automatic gearbox smoothly. They also swap between petrol and electric power seamlessly with no input required from the driver.

On any road, the Kia copes ably with bumps and ridges, leaving the dri er and assen ers unru ed Such comfort is not at the expense of handling as the Niro deals with corners in a calm manner. A Skoda Karoq is more fun to drive, but the Kia is ideal or an one o alues refine en and hush at higher speeds courtesy of the way it seals out any hubbub.

SUMMARY Maybe not the most exciting choice, the Kia Niro still delivers big on comfort, space and quiet in either of its hybrid forms.

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REQUESTING

TECH FOR LIFE More than 25 years after Access to Work was introduced, Business Disability Forum and disabled people are calling for a modern take on the provision of assistive tech

It’s something that disabled people said would transform their life

Calling for accessible tech

I

n an ideal world, assistive technology (AT) would be readily available to anyone who needs it, but this isn’t currently the case. In late 2020 the Parliament’s Work and Pensions Select Committee published their Inquiry on Assistive Technology in Employment. In response o e findin s, usiness isabili oru (BDF) spoke to employers, disabled eo le and assis i e ec nolo e er s about what needs to change.

sorting out and some of that is inclusive of communication issues, but a lot are AT related as well,” stresses Angela. Some of the issues reported to include len and di ficul assessment processes; equipment being incompatible with organisations’ IT systems; limited choice of equipment; outdated equipment or software. Angela states: “I think there’s not two ways about it, we need reform in this area and BDF has been calling for that for a few years now.”

DIVIDE

TECH FOR LIFE

ne o e e barriers a ed in is response was the availability of AT for disabled people at different stages of their lives. “AT is generally felt to be something that is sort of a divide between those who have and those who haven’t in terms o one , e lains n ela a e s, head of policy and advice at Business Disability Forum. Thanks to government provisions like Disabled Students Allowance and the Access to Work scheme, AT is available for those currently in education or employment, but it doesn’t stretch further. “The idea that you don’t need this technology if you’re not in education or in work is wrong,” stresses Angela. “It’s about tailoring it to whatever life choices you want to make, sometimes for disabled people it’s not work or education.” A lack of equal access to AT raised questions about what is missing in the current system.

BDF are calling for a new Tech for Life scheme which is fully inclusive, collaborative and streamlined. When asked, multiple respondents said that they would like to see the application process for the proposed subscriptionbased service mirror the Motability Scheme. They highlighted areas of the Access to Work process that didn’t work for them, but how similar areas of the Motability Scheme process did. “Disabled people didn’t say the assessor had to be a specialist in a condition, but they want an empathetic process with a result that is tailored to their needs,” reveals Angela. s e ible ro ision a ollo s whatever you want to do in life, it’s something that disabled people said would transform their life.” BDF are now conducting further research and making connections with the government to discuss this new model as a serious option for the provision of AT in the future.

CURRENT PROVISION “While Access to Work has been enormous for keeping people in work, ere s so e si nifican issues a need

FOR MORE INFORMATION

To learn more about Tech for Life and share what you think of the proposed scheme, visit www.businessdisabilityforum.org.uk

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VIRTUS SPECIALIST SEATING SYSTEM The Virtus has been speci cally designed to meet the needs and support users who have an inability to maintain a symmetrical and unsupported sitting posture. This unique fully adjustable modular seating system is compatible with a wide range of accessories, belts and harnesses and allows you to choose between a fixed and dynamic backrest option; ensuring the posture of the user is kept neutral and secure at all times. Scan the QR code to visit the Virtus web page and nd out more

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Product Roundup Take a look at our top accessible product picks to start 2021 HOME

AQUACLEAN MERA CARE

Geberit, POA www.geberit.com, 01926 516 800

The Geberit AquaClean Mera Care was created by listening to user requirements, aiming to combine adaptability, with clever features to ultimately put the user in control creating more independence in e ba roo nno a i e ec nolo , including a water storage heater, personalisation and compatibility are at e ear o e era are

MOBILITY

THERATRAINERS

SLING BACK 2

www.medicotech. co.uk, 01908 564100

Stylish, silent, and functional, the Sling Back 2 from WheelAir combines a range of carefully selected fabric and foams to enhance back support and co or Available in sixth widths, e sli fi s all manual or powerchairs with a tension adjustable strap system to help reduce core temperature for eelc air users

Medicotech, POA

MEDICOTECH THERA-Trainers is a range of active and passive exercise bikes for use at home for those with mobility issues who want to exercise and i ro e eir fi ness le els e bi es allow you to cycle against resistance, forward and backwards, all while helping to build up strength and s a ina

HOME

UCCELLO KETTLE Uccello, £55 www.uccellodesigns. co.uk

MOBILITY

BEARHUGZZZ BED

Kinderkey Healthcare Ltd, POA www.kinderkey.co.uk, 01978820714

Bearhugzzz Bed is suitable for ulnerable c ildren and adul s Providing a calm environment, it can help to improve poor sleep patterns and ensure safety for those who wake durin e ni a or benefi is the bed’s ability to withstand vigorous behaviour, thanks to its soft padded sides which protect the user against in ur

MOBILITY

WheelAir, £650 wheelair.co.uk, 0141 432 0425

Thoughtfully designed to enable hot water to be poured from kettle o cu , easil , sa el , and confiden l the Uccello kettle is a stylish and essen ial roduc or an i c en With a light-weight design and circular dynamics, rotating cradle there is no longer any lifting, straining or balancin lso a ailable in red

POSTURE

VITRUS SEATING SYSTEM RMS, POA www. ineedawheelchair. co.uk, 01795 477280

The unique design of the Virtus Seating System allows the users i s o be securel fi ed in lace or correct postural alignment; and the optional Dynamic Backrest allows the user to extend safely and then be returned back to their starting position maintaining correct postural ali n en

HEALTH

THE HYDRANT

Hydrate for Health, from £13.95 www.hydrateforhealth.co.uk, 0800 292 2382

The Hydrant: solving a drinking roble u e nu bers o ulnerable people are at serious risk of dehydration because they are unable o reac , li or old drin s is eans e canno drin i ou el e Hydrant enables people to drink i ou assis ance a all i es

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Subscribe to Start your 2021 with a subscription to the UK’s favourite disability and lifestyle title, Enable

WHO ARE WE?

Enable Magazine is the UK’s leading disability and lifestyle title, and we are here to bring you all the latest news, interviews and discussions pertinent in the world of disability. If you are having trouble getting out to your local Enable distribution point, or you’re reading nable or e firs i e, a subscri ion ill ean ou ne er iss an issue o e os or ard in in disabili a a ine eleased bi on l , nable is e us read i le or all in s disabili e s ea direc l o our readers, charities, organisations to politicians and disability advocates on subjects that a er o ou ro discussin in or a ion a ailable for disabled people during pregnancy, discussions on a e o ern en is ro osin o benefi e disabled co uni and be ond, eac issue is bursting with content. And this issue is no different.

WHAT’S INSIDE?

ere s no den in loo ed different to what we all envisaged, but e re in in osi i el or e ear a ead nd so are a os o our or er interviewees on page 31, friends of nable includin or er co er s ar a ie i er, al ers o enca CEO, Edel Harris: they share their a bi ions or disabili re resen a ion in the year ahead. Starting the conversation around en al eal , ana in slee o planning ahead for your disabled child’s care after you’re no longer here, there is a lot inside. Rest assured, you’ll get e sa e in or a i e con en in e or co in issues If you subscribe today – for one – or o ears eac issue o nable ill be delivered directly to you. a es less an fi e inu es o subscribe and our riendl ea are ai in o ear ro ou


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January / February 2021


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PHOTO: STUDIO NI

Eleanor was a Miss England finalist

Normalising arthritis in young people Arthritis is often associated with the older generation, but it can affect anyone at any age. When Eleanor was in her late teens, rheumatoid arthritis took over her life, now 26, she wants more awareness for young people

I

n the UK, rheumatoid arthritis (RA) affects more than 400,000 people, with the immune system targeting joints, leading to pain and swelling that can be debilitating. When Eleanor was 19 and at university in Leeds, she was diagnosed with RA. “It was like I woke up one day and my shoulder was in agony,” recalls Eleanor. “I went to the doctor about the shoulder pain and because the weather turned cold there was pain in my feet, at the time, I didn’t think they were linked at all.” After receiving blood tests, Eleanor was told she had the highest in a a or ar ers er doc or ad ever seen. “I’d had what is referred to as res ers u and in i as as i something almost ignited my immune system and kicked RA into action,” explains Eleanor.

“It got to the stage where I couldn’t do anything for myself, I took a year out of uni and my mum essentially became my carer,” reveals Eleanor. After a year and a half of trying various medications, Eleanor found something that worked for her, but by this point irreparable damage had been done. “Over time my arthritis had damaged my left hip so badly, after an X-ray they said there’s no cartilage left, it was just bone on bone, there was nothing to do but give me a hip replacement,” remembers Eleanor. “The drugs started working so as soon as I recovered from surgery I was back to normal. It was weird because I went from such an intense two years

LOSS OF INDEPENDENCE At diagnosis the pain mainly affected Eleanor’s hands and feet, but it quickly spread through her body until only her jaw was unaffected. Her treatment lan be an, bu as e in a a ion continued and Eleanor lost her ability to walk, she was also hospitalised as her liver couldn’t break down medication.

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Eleanor received a hip replacement due to her arthritis

from being healthy to completely disabled back to healthy again.”

KNOWLEDGE Since Eleanor found the right treatment, she has rebuilt her life: reaching the finals o iss n land, s ar in er o n business and becoming an advocate for young people with arthritis through the National Rheumatoid Arthritis Society (www.nras.org.uk) Young Voices Panel. With very little previous knowledge of the condition herself when diagnosed, Eleanor didn’t like speaking with her peers about it, often avoiding the word arthritis when asked. “It sounds like an awful thing to say and quite silly, but I remember wishing it had a cooler name,” admits Eleanor. “I felt like I was suffering enough as it is, the last thing I wanted was people thinking I was uncool as well.” As Eleanor is able to manage her condition, she now feels more comfortable speaking about what she has been through, but wants more awareness of how it can affect young people in order to break down the stigma she felt after her diagnosis. FOR MORE INFORMATION

Versus Arthritis www.versusarthritis.org NRAS www.nras.org.uk Arthritis Action www.arthritisaction.org.uk


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Rare is STRONG 28 February will mark Rare Disease Day: a patient-led awareness day celebrated globally. The day’s organisers share this year’s theme and why the strength of community is more important than ever

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ne in 20 people will live with a rare disease at some point in their life, but despite this there is no cure for the majority of rare diseases and little awareness. These facts were the motivation behind Rare Disease Day (RDD).

The awareness day is marked every February by organisations and people living with rare diseases, aiming to improve knowledge of rare diseases amongst the general public while encouraging researchers and decision makers to address inequalities. At its inception in 2008, which was a leap year, RDD was held on the rarest day of the year: 29 February. It is now held on the same or closest date each year. “I think what is unique about RDD is it’s a patient-led awareness day,” reveals Lara Chappell from Eurordis, one of the organisations that created the day. “The messaging is from patients about patients and speaking to the over 300 million people living with a rare disease globally.”

STRENGTH This year, RDD is shining a light on the strength of community, Lara explains: “This year we turned RDD around and said rare is many, rare is proud, rare is strong. “We’ve embraced the diversity of RDD: there are rare diseases that are visible, some of those being a physical disability, but others are not visible, it could be blood disorders, for example.”

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Lara’s son has a rare disease and she has learnt to advocate for him by being involved in this community, she explains: “You are working together and findin a eo le are oin through the same thing, there’s so much s ren a ou can find in a

CHANGE Discussions around isolation have been inescapable over the last year, but this feeling wasn’t something new to the rare disease community. “For people living with a rare disease, isolation can be a very common challenge,” stresses Lara. “It’s something that the community of people living with a rare disease have in solidarity. “RDD is helping to break that isolation and shows people by sharing common struggles, but also successes, we can work together as a community to advance.” This RDD, feeling connected is more

By sharing common struggles, but also successes, we can work together as a community

important than ever. This has driven the organisations behind the day to create more virtual, free resources. “It’s so important to feel connected and to shine a light on people living with a rare disease and families at this time,” emphasises Lara. “We are utilising social media and we will be producing a video with our national partners in over 30 languages. “By providing digital tools we will see this united visual identity everywhere on 28 February.” There is constantly more to learn about the rare diseases affecting millions of people around the world. With RDD we are one step closer to greater treatments and opportunities for anyone living with a rare disease. FOR MORE INFORMATION

Learn more about rare diseases and how to show support on the day from www.rarediseaseday.org and www.raredisease.org.uk


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spotlight

LET’S GET MND SMART Annually, 1,100 people in the UK are diagnosed with motor neurone disease. For decades, the degenerative disease has, on the surface, not seen any movement towards a cure. In 2021, all this looks set to change, Professor Ammar Al-Chalabi speaks to Lorne Gillies about the future of MND research

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here is a one in 300 chance of developing motor neurone disease (MND), which can affect people in different ways. MND is a group of diseases that affect the nerves, called motor neurones, in the brain and spinal cord that tell your muscles

what to do. Affecting adults of any age, MND affects 5,000 adults in the UK at any one time. At present, there is no known cure for MND with life expectancy estimated to be three years from initial signs of symptoms. o e er, ere is no ard and as defini i e en i co es o with the disease progressing rapidly or slowly. Some forms of MND can be treated, in a limited capacity, by a drug called riluzole, which has been in distribution for over 25 years with no new breakthroughs; until now.

TRIALS “Testing of medicines has largely failed because our understanding of the disease hasn’t been great,” explains Professor Ammar Al-Chalabi from King’s College London, and also a member of My Name’5 Doddie ounda ion s cien ific d isor oard e e no ad e ec nolo o understand the disease until recently. “Now, we’ve got multiple trials and a lot happening. Right now, I have eight trials being set up and another two or three in the early enquiry stages; that’s far more that we’ve ever had before. “If you’re testing 10 drugs instead of one a year, then you’re doing research 10 times as fast. Also, we’re shooting closer and closer to the target: our understanding of the disease is getting better, so we are getting better at aiming,” enthuses Prof. Al-Chalabi. ne suc rial or in o s eed u e i e i a es o find edicines targeted to slow, stop, or reverse the progression of MND is MND-SMART.

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spotlight MND-SMART A pioneering clinical drugs trial will see hundreds of people living with MND across the UK take part in the testing of potential treatments. It is an incredibly exciting time, with MND-SMART working as a multi-arm trial, meaning that unlike typical clinical trials that look at testing single treatments, MNDSMART will take different treatments compared to a single group taking a dummy drug. Ultimately, with MND-SMART more people are likely to receive active treatment. Prof. Al-Chalabi explains: “MNDSmart – which originated in Edinburgh – is a really innovative trial. It is a platform trial where you study multiple drugs at the same time, meaning you can get your ans er uc uic er o find ou a works and what doesn’t. “There is another trial underway called TRICALS, which is part of a European, and now, international collaboration where we do trials in a faster way,” Prof. Al-Chalabi continues. “It is now a platform trial as well, where you test several agents at the same time. We’re also doing lots of things in association with the trials, so even if the dru doesn benefi eo le i we still learn a lot about the condition and why the trial didn’t work so we can do the next trial faster and better.”

PROGRESSION As well as clinical trials there are other types of clinical research. For people living with MND they can get involved with clinical trials, however, the wider general public can participate in clinical research to provide wider information and understanding of genes and how MND works, promoting even more knowledge of the causes of MND and potential life-altering medication. Prof. Al-Chalabi continues: “We need someone who doesn’t have MND to compare their gene variations, or what exposures a person has had in their life, for example, are they sporty or not.” Similarly, advancements are being made when it comes to precision medicine: where a drug is targeted directly to a sub group of people, which could highlight a lot more about why MND is happening.

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Rob Burrow is documenting his journey with MND

“For a precision medicine approach, e are defini el co in close o a breakthrough with gene therapy, it does look like those may well slow it down si nifican l or o en iall s o i , adds Prof. Al-Chalabi. The more information the greater the chance of working towards a cure, for all conditions, but MND has made remarkable progress since 1994, when the last drug for MND was discovered. Faxing results in days gone by has elevated to the swift response of an email, technology advancements are not to be ignored. But, the importance still stands around the number of people participating in trials. “If I’m trying to identify a cause of MND but I’ve only got 50 people to study, it’s much more di ficul co ared o i ad 50,000 people to study, or even just 5,000. So, sharing your information with other researchers is vital,” continues Prof. AlChalabi. From sharing research to raising awareness from sporting personalities affected by MND, including Doddie Weir, Rob Burrow, to Stephen Darby and the late, Fernando Ricksen: knowledge of MND is reaching crescendo.

We’re shooting closer and closer to the target “The more people that know about MND, the more likely people will come forward to participate in trials and also people who are not affected, because we also need people who don’t have MND; we need the general public to be involved,” emphasises Prof. Al-Chalabi. “People are much more likely to hear about MS but that is because it is not likely to shorten your life, whereas MND does, so there are fewer people around with it – even though you have the same chance of developing either condition” With more research and results from ongoing trials, the future of MND medication is certainly looking brighter. What will 2021 have in store? FOR MORE INFORMATION

Stay updated with MND Smart (www.mndsmart.org), My Name’5 Doddie Foundation (www.myname5doddie.co.uk), and get advice from MND Association (www.mndassociation. org) on 0808 802 6262.


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TOOLS BUDGETING No matter if you are in education, employment or are unable to work, having a budget will ensure you don’t overspend and have enough money for your outgoings. Your budget should be personal to you and your needs, including things like your accommodation costs, bills, care expenses and other outgoings. If you receive a ersonal bud e or an benefi s ese can be included in your budget. Working to a budget will ensure you have enough money available throughout the month, not just when our inco e firs beco es a ailable lon i our regular outgoings, try to include major events like family birthdays or days out each month so you know funds are available.

When trying to get on top of your money and spending habits, technology is your friend. Helpful services like the Money a i a or ool ro e one d ice Service (www.moneyadviceservice.org.uk) can help you check where you are going wrong with spending and build a budget that is personalised to you. The handy tool was created in response to the economic impact of the coronavirus pandemic but is here to stay and can help get any size of income under control. lon side e ool, ere are no an apps that can help you to track your money. Popular mobile app Emma (www.emma-app. com) is a free service created to help you identify wasteful subscriptions, tackle debt and sends you weekly or monthly reports on your spending habits.

Gaining FINANCIAL CONFIDENCE A new year often signifies a fresh start, making it a great time to get in control of your finances. There is a host of tools and support available to help you or the person you care for become financially confident

KEEPING TRACK One of the simplest ways to ensure you are keeping to a monthly budget, or to identify where you are falling short, is to use a bank account that is smart with your spending. Banks like Monzo (www.monzo. com), Starling (www.starlingbank.com) and Revolut (www.revolut.com) come with mobile banking apps that categorise your transactions as they are made, allowing you to review your spending at the end of each month or whenever you need to. Many of these so-called modern banks also allow you to set up budgets for your card and inform you when you have nearly used all of your money for each category. lon i odern ban s, c ec in a our current bank has to offer will help you get in control

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of your money. Banks including Santander (www. santander.co.uk) and Nationwide (www.nationwide. co.uk) are introducing similar transaction trackers and spare change saving services similar to smaller ban s ddi ional ser ices a also be ro ided, or modes of accessible communication that you weren’t previously aware of that could help you or the person you care for. If you struggle to manage your own money, or would like more support and a loved one is your power of attorney for medical purposes, they could also el ana e our finances n order o do is, you will need to register your power of attorney with your bank, normally by providing your power o a orne cer ifica e, iden ifica ion li e a dri in license and roo o address o find ou ore abou making a power of attorney, visit www.gov.uk


enable GRANTS, FUNDING AND BENEFITS

ORGANISATIONS AND CHARITIES You don’t have to tackle your money worries alone. Along with speaking to a trusted family member or carer, there are many organisations dedicated to supporting money management and tackling debt. Citizens Advice (www. citizensadvice.org.uk) and the Money Advice Service (www. moneyadviceservice.org.uk) are respected organisations that can o er i ar ial, confiden ial advice on any money questions or concerns you have, whether yours or the person you care for. The two organisations can also signpost you to further services that can help i our s ecific ueries If you would like support to tackle any debt, StepChange (www. stepchange.org) is the UK’s leading deb c ari o erin confiden ial advice, fee-free debt management services and the option to create an online debt management plan. Along with organisations dedicated to money management, some disability charities provide accessible guides to money management and budgeting. These include: Mencap’s (www. mencap.org.uk) easy-read guides on one , benefi s and a in or support; Scope’s (www.scope.org. uk) information pages on debt and managing your money on Universal Credit; Alzheimer’s Society (www. alzheimers.org.uk) advice on managing money as a person with dementia.

ou could be su or ed financiall b ran s, undin or in s li e ada a ions and arious benefi s The Turn 2 Us website (www.turn2us.org.uk) allows you to check what grants you could be eligible for depending on your disability or condition, current situation and what you require funding for. If you need to make adaptations to your home or source adaptive equipment to help you in everyday life, some of these costs could be covered by your local authority. You can contact your local authority who will usually carry out a needs assessment to see what could help you and if they can fund this. ou or e erson a ou care or could be en i led o arious benefi s li e Disability Living Allowance for children, Universal Credit, Carer’s Allowance or Employment and Support Allowance. To check what is available and your eligibility visit www.gov.uk urren l , e a in ic ou a l or arious benefi s is di eren due o e on oin corona irus ande ic e a ori o benefi s can no be a lied for solely online with face-to-face assessments being kept to a minimum. You can stay up to date with how this process is adapting to the current situation through Disability Rights UK (www.disabilityrightsuk.org).

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Access At Work with Audit Scotland Brought up in Glasgow, Fiona McMillan, joined Audit Scotland’s business support team as a Modern Apprentice. Diagnosed with multiple sclerosis whilst still at school, Fiona shares her experience of starting her career at the organisation

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ultiple sclerosis (MS) is a lifelong, incurable disease. As a teenager, experiencing vision disturbances, spasms and ea ness, confir a ion b a specialist that I had MS didn’t come as a surprise. At 19 I had to begin considering what sort of future I would have.

CHALLENGES I started a degree at the University of Glasgow, but continuing my studies beca e increasin l di ficul o bein able to read slides in lectures, a long bus ride every day with a weak bladder, and navigating an extensive campus was challenging. Ultimately, I took the decision to leave university. Living with MS made me really evaluate what I wanted to do with li e le uni ersi be ore final exams and decided to focus on my career. It was a daunting prospect to begin looking for work. How would I manage physically?

NEXT STEPS When I went for my interview at Audit Scotland, I explained the support I would need to execute the role to the best of my abilities, including the use of large print documents. I told my interviewers that I had bladder weakness and might

Fiona completed her MA with Audit Scotland

Working in the public sector has really been amazing, with the requirement to consider people with a disability

need to leave the interview. Thankfully, there was no fuss made – I was sympathetically told to leave if I needed. The interview itself was in Audit co land s dinbur o fice, al ou I was living in Glasgow, where the job was based. In hindsight, given Audit Scotland’s willingness to be supportive of all candidates, I should have asked for the interview to be held in their las o o fice In the workplace there have been some challenges due to my condition, from reading documents because I have ongoing problems with my vision, to moving tables and chairs for meetings. There are also hurdles because I don’t like to ask for help, but also because of

limited understanding of MS and its impacts. But, working from home because of as reall benefi ed e

WORK AT HOME can or e ible ours s ar in early works for me) and I don’t have to navigate travelling to work. Audit Scotland were quick to get me set up with all the equipment I needed to work from home – I got an occupational assessment, monitor and chair. Audit Scotland does so much to support colleagues with a disability. I’m now a member of an internal group that’s working to improve the lives of all colleagues with a disability – whether that’s physical or mental – and raises awareness across the organisation. Working in the public sector has really been amazing, with the requirement to consider people with a disability. The ability to work from o e, e ri e ui en and e ible hours is a huge advantage. FOR MORE INFORMATION

Learn more about Audit Scotland and career opportunities by visiting their website here, www.audit-scotland.gov.uk

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PLANNING T Reskilling or making a big career change can be scary, but it can help you enjoy work again if you have been made redundant or don’t like your current position. We speak to Shaw Trust about what to consider before making a change

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ou could decide to reskill for a variety of reasons: you might have been made redundant, you don’t enjoy our curren field o or , or ou us anc a ne c allen e If you are considering a career c an e or an o ain ne s ills, re ara ion is essen ial

RE-EVALUATE You can decide to reskill at any age or point in your career: if you have recently been made redundant due to the coronavirus pandemic, this could be e ideal i e o c an e career Tanvir Ahmed is a support manager i a rus and is a ro oundl ea ri is i n an ua e user e u ilises an ccess o or ran o boo in er re ers in e or lace, subsidised b is e lo er or ose eo le o a e ne er had the time to train and change career, no is a er ec o or uni o s e bac and re e alua e ere ou an o be and a ou an o do, e lains an ir As face-to-face interactions reduced in , i so e co anies loo in o con inue re o e or in , online courses and activities are a great a o access rainin ro iders li e u ure earn u urelearn co and e en ni ersi o en ac u a e online and re o e courses a can el ou o res ill ou s ru le i online ac i i ies or sel s ud , ere are s ill a s or you to access training, Tanvir says: or ose o are une lo ed and clai in benefi s, s ea o our or coach about being referred to your local or and eal ro ra e Once on the programme, your support ana er ill be able o s ea i you about the options and support available to you to re-train and c an e career “If you are currently in employment, contact your local college about

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TO RESKILL Language/English interpreters up to the grant’s annual cap (£60,700 for 2020-2021).”

the courses they are delivering or perhaps investigate the possibility of an apprenticeship in your desired career,” continues Tanvir. “Apprenticeships are not just for school leavers but a fantastic opportunity to retrain whilst still earning a living.”

PERCEPTION

HOMEWORK Before you start searching for training, courses or apprenticeships, take time to consider the area you want to reskill in and any considerations you need to take. “If particularly niche, consideration should be given to whether there is an enough demand or vacancies within e desired field, ad ises an ir ere are of course some jobs which may not be appropriate given the individuals disability and the role, for example, as a Deaf person I know I am unable to join the Army.” Career coaches can help with research and aren’t just for people in education: they can help you at any stage in your life. You can use the National Careers Service (nationalcareers.service.gov.uk) in England and My World of Work (www.myworldofwork.co.uk) in Scotland to consider what career you want to pursue or to connect with advisors. Once you have decided, these will el ou find ou a our ne s e s should be. “If you know what you want to do, research the role and the steps you need to take to reach your goal, i.e. looking at e ualifica ions ou need or e ob, explains Tanvir.

SUPPORT Changing career or reskilling can feel like an overwhelming prospect, but there is specialist support available when entering a new workplace. “Often people with a disability or health condition lack awareness of the support available, such as equipment and services, which would enable them to work on par with their peers,” reveals Tanvir.

Now is the best time to reskill

Apprenticeships are not just for school leavers but a fantastic opportunity to retrain If you are in full-time education, your careers advisor or support worker should be able to speak to you about the world or work and the support available. If you have been unemployed for a length of time or you are changing careers, the Access to Work scheme (www.gov.uk) can help with equipment and adaptations you need to do your job. “Access to Work, a grant available to those with a disability or long-term health condition to cover the cost of inwork support, is the DWP’s best kept secret,” emphasises Tanvir. a lied or i in e firs six-weeks of employment, Access to Work will cover the full cost of support required. For instance, as a Deaf person, Access to Work covers the cost of my British Sign

When searching for a new job, looking for accreditations like the isabili onfiden bad e can put your mind at ease if you are concerned about an employer’s perception of disability. “In my capacity as a support manager, and as a person with a disability, I seek employers who are si ned u o e isabili onfiden scheme as this promotes they are committed to equality in the workplace,” reveals Tanvir. “We also need to ensure individuals are able to speak with potential employers about their disability or health conditions in a way which alleviates any concerns they may have.” If you are concerned about disclosing your disability to a new employer, organisations like Shaw Trust can help, Tanvir explains: “Given the impact the current coronavirus pandemic has had on employment, there are now less vacancies and more people competing for them. “Will this mean an employer is more likely to employ an individual without a disability or health condition? Who knows, but we are positive that we can support our participants to demonstrate they are the best person for the job.” Deciding to reskill and change your career can be daunting, but it will enable you to feel passionate about your work and ensure you are in the right position for you.

FOR MORE INFORMATION

The www.shawtrust.org.uk can provide further guidance and information on reskilling opportunities open to you.

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Disability hits the spotlight In an Academy Awards history first, movies looking to contend for best picture at the Oscars will have to meet new inclusion standards, changing the landscape of disability representation on and off screen PHOTOS: BAFTA

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aking effect from the 2024 awards, the Oscars announced new inclusion requirements for Best Picture Eligibility marking the start of a, much needed and called for, era of disability representation Beyond the glitz and the glamour of the Oscars, representation and diversity has been a continued topic of contention amongst nominees and winners. Reaching a crescendo for spotlights on disabled, Black, Asian and ethnic minority, and LGBTQ+ nominees, the Academy ards ill no re uire fil s loo in to win the top gong for the evening to meet two out of four inclusion standards prior to being eligible for an Oscar nomination. Covering storytelling, casting, production, members of staff working behind the camera, it is hoped the new standards will see more disabled and underrepresented voices under the spotlight. After all, we can’t showcase the disabled experience without the vital input from disabled creatives.

BAFTA BREAKTHROUGH The British Academy of Film and Television Awards (BAFTAs) has also changed the landscape of awards session, recognising rising talent in their newly announced UK and ini ia i e rea rou su or ed b e i with disabled creatives making the cut. In November, the team at Enable went on the virtual red carpet at the BAFTAs speaking with some of the recipients of this year’s BAFTA Breakthrough. When it comes to changing the landscape of disability representation on the big and small screen, this is what they had to say:

Bim Ajadi

Director, Here/Not Here (BSL Zone) “Authenticity counts for a lot, it means things are believable and it means that when you look out into society what you see there and what ou see on a ele ision screen or fil screen is the same.”

Jordan Hogg

Director, Ackley Bridge (Channel 4) “I don’t realise I’m disabled until I’m in certain situations and think maybe I can’t do that. I’ve always hit it head on and tried to do things better than anyone before just to prove a point.”

Jim LeBrecht

Co-director, Crip Camp (Netflix) “Just because you haven’t seen other people do it, doesn’t mean you can in s are i ro in e ad so e reall s ecific oals or ri a , and this was to change perceptions of disability for people with and without a disability.”

Tim Renkow

Comedian and performer, Jerk (BBC Three) “Some people feel awkward and uncomfortable around me and that’s just because of the disability. There are two ways you can go with that, you can either try really hard to make people comfortable, or you can go the complete opposite way and just lean into the uncomfortableness.”

Go behind the scenes with Enable, you can find our full Enable at the BAFTAs series on our website, www.enablemagazine.co.uk enablemagazine.co.uk


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BREAKING BARRIERS

Brynn with

Throughout 2020, 15-year-old Brynn set the challenge of pushing himself the length of the Shetland coastline to raise money for his favourite charity. We speak to Brynn and his mum, Kim, about his journey

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t the beginning of 2020, Brynn Hauxwell had plans to complete the Hadrian’s Wall cycle route by wheelchair while fundraising for charity, but the need to shield due to the pandemic halted his efforts. Undeterred, Brynn knew he had to find a ne a o raise one or is local charity: Ability Shetland.

DETERMINATION s e firs na ion ide loc do n s ar ed in arc , r nn ad o find a a to fundraise from home. Brynn is autistic, as , se ere bri le as a and fi ed ankle contractures meaning he uses a wheelchair. Due to his asthma, Brynn had to shield and his mum and sister, Faith, stayed home with him.

Brynn with his sister (L) and mum (R)

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“Brynn still wanted to challenge himself whilst raising funds for Ability Shetland, but we had to think of what we could achieve if we were unable to go past our garden gate,” explains Kim. Brynn decided he wanted to push himself the equivalent of the Shetland coastline, totalling 1,679 miles. Utilising his Invictus wheelchair trainer, a static exercise trainer for his active chair, Brynn embarked on his challenge inside when the weather was bad, and in the garden shed when it was dry. “We were unable to go past our garden gate for nearly 100 days,” reveals Brynn. “So [I] started off using my Invictus wheelchair trainer, which is like a manual treadmill on rollers.”

COMMUNITY When people who were shielding were able to go outside for exercise again, Brynn adapted his challenge and started completing his miles around the local area. “We would all say that the highlight of the current challenge would be being able to get outside,” emphasises Brynn. “After 98 days of shielding in our home and

arden, e ere finall old a i as safe enough to be able to go and exercise outside locally again. “Just the feeling of being outside in the open again with the sounds and smells of Shetland surrounding you was incredible.” Throughout the challenge, Brynn had to raise his fundraising target multiple times. In April 2020, he initially set out with hopes of raising £2,000 but when Brynn completed all 1,679 miles on 13 December, Brynn had raised more than £7,000 including gift aid. “The positive response on social media has been brilliant mentally,” reveals Brynn. “We realised that we were motivating and inspiring so many others to get outside and push their limits, so why stop? Plus, we get to challenge ourselves more and fundraise for some great causes at the same time.” Now that this fundraising feat is over, Brynn is looking forward to some welldeserved rest before his next challenge. You can follow Brynn as he takes on new challenges by searching Breaking Down Barriers with Brynn on social media.

Read our extended interview with Brynn and Kim online, www.enablemagazine.co.uk


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