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Hannah Cockroft on life at the top ahead of the World Para Athletics Championships in London
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July / August 2017
AN AUTISMFRIENDLY WORLD
What’s going on to make society more inclusive?
The former CBeebies host on her exciting new career path
MAKE SOME NOISE
The festivals going the extra mile for disabled music fans
The best accessible holiday destinations in the UK
enable Forget can’t - think can!
PUBLISHER Denise Connelly email@example.com EDITOR Lindsay Cochrane firstname.lastname@example.org STAFF WRITER Lorne Gillies email@example.com EDITORIAL CONTRIBUTORS Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie firstname.lastname@example.org PRODUCTION ASSISTANT Lisa McCabe email@example.com SALES Marian Mathieson firstname.lastname@example.org ENABLE MAGAZINE www.enablemagazine.co.uk
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Welcome Hello, and welcome to the July/August issue of Enable! I don’t know about you, but I’m glad to finally see the back of the doom and gloom of winter – and there’s plenty on offer this summer to make up for the last few months. For starters, we’ve got the World Para Athletics Championships to look forward to. Taking place in London, this international event is going to have all of us on the edge of our seats at Enable HQ – especially when it comes to this issue’s cover star, Hannah Cockroft! The wheelchair racer is one of the favourites to pick up gold at the competition – and you can see what she had to say about the event on page 50. Also with summer in mind, we’ve been rounding up the best holiday hot spots in Britain for people with access needs. From St Andrews to Great Yarmouth, there’s something for everyone. Got a favourite British getaway? I want to hear about your experiences! Just email email@example.com, and we’ll publish your recommendations soon. A great British summer tradition is the mighty music festival – and organisers are going the extra mile these days to make their events even more inclusive. We’ve been finding out what major festivals have to offer, from Glastonbury to Reading and Leeds. Elsewhere this issue, we’ve been doing some delving ahead of a landmark case heading to the High Court this July regarding the assisted dying debate. As Noel Conway seeks to challenge the rules for people with terminal illnesses, we’ve been speaking to campaigners on both sides to find out what this could mean for people with disabilities. Don’t miss our special Care Guide this issue, where we’ve been finding out more about the different support options available. It kicks off on page 37. And that’s just a flavour of what we’ve got to offer you this issue! So what are you waiting for? Grab yourself a cuppa and get stuck in. I hope you have a fantastic summer, and we’ll see you in the autumn! Until next time,
Lindsay Cochrane, Editor
EDITOR’S PICKS... 10 CERRIE BURNELL The former CBeebies presenter spoke with Enable ahead of the launch of her new children’s book to talk inclusion for all. 21 HEADS TOGETHER FOR MENTAL HEALTH How far have we come in challenging the taboo around mental health? 70 AN AUTISM-FRIENDLY WORLD As society becomes more aware of autism and what it means, what’s going on to make the world a more inclusive place? We found out.
DON’T MISS… The chance to win some fantastic family days out with our competition on page 30!
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©DC Publishing Ltd 2017. 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 ublishing td he publisher takes no responsibilit or lai s ade b advertisers within the publi ation ver e ort 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.
70 10 82
CERRIE BURNELL The former CBeebies presenter speaks to Enable about her career so far, and her new venture – writing children’s books.
GETTING FROM A TO B Buses, trains, taxis – the world of public transport is making progress in terms of access. We take a look at what’s out there.
SHE’S GOT THE LOOK Talent agency boss Louise Dyson MBE tells Enable about her fascinating career – and mission to make disability a part of the mainstream.
AN AUTISM-FRIENDLY WORLD As society becomes more aware of autism spectrum conditions, we take a look at what’s going on to make the world more accessible to those affected.
SOMEONE LIKE ME In the world of children’s entertainment, disability is becoming more visible. We take a look at some of the best examples.
life VISIT BRITAIN The UK is home to lots of fantastic holiday destinations – and many attractions are a lot more accessible than you’d think! ACCESSIBLE FESTIVALS From hippie haven Glastonbury to rocky Download, the summer season is all about the mighty music festival – and the events taking place this summer have got access in mind. LIFE WITH MS At 16 years old, Melissa Leavy is maybe not your typical MS patient – but that’s not going to stop her from living the life she wants. Melissa and her mum Theresa talk about their experience with the condition. HOBBIES FOR ALL There’s more to life than Netflix binges and social media. We take a look at some accessible activities to get involved with over the summer.
carers TAKE A BREAK Short breaks and respite support aren’t just a luxury – they’re essential. We find out more.
care guide We’re turning the spotlight on social care and support, and what’s out there to help you live the life you choose. We’ve been looking at the di erent support options on o er, ettin the lo do n on hirin a and e find out about the experience of two individuals in the sector as a service user and a member of sta . Check it out from page 37 onwards.
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spotlight UNDERSTANDING YOUR RIGHTS When it comes to discrimination, what rights and protections do you have in everyday life? We’ve been finding out about what’s out there to support you.
ADAM PEARSON The presenter, actor and disability rights campaigner shares why he believes it’s time we all speak up more for our rights.
HEADS TOGETHER FOR MENTAL HEALTH Following on from the high-profile royal campaign, we’ve been taking a look at the stigma around mental health – and how much has changed.
TIME FOR CHANGE With 800 people per week being told they no longer qualify for the higher rate mobility component of PIP and losing their Motability car as a result, we take a look at how benefit cuts are really affecting disabled people.
ASSISTED DYING VS. THE DISABLED COMMUNITY As Noel Conway challenges his right to die in the High Court this July, we take a look at what the case could mean for disabled people, with campaigners on both sides offering their take.
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sport THE WORLD PARA ATHLETICS CHAMPIONSHIPS With the year’s biggest parasporting event on the horizon, we look at the facts behind the competition. GOING FOR GOLD One of the country’s most recognisable para-athletes, Hannah Cockroft told us all about her career so far – and her hopes for the summer of sport ahead.
PIC: © SESAME STREET; ONEDITION 2016/PARALYMPICS GB
REVIEW: FIAT TIPO 60 THE We take Fiat’s rebooted Tipo out for a spin.
CELEBRATES 40TH 63 MOTABILITY ANNIVERSARY The nationwide
affordable car leasing scheme recently reached a milestone – conversion specialists TBC told us about their role in the celebrations.
employment and education
TO GREATNESS We find out 75 JOURNEY about Channel 4’s inclusive approach to business.
WORK-CARE BALANCE One 78 THE in nine employees have caring
responsibilities – but what are their rights in the workplace?
WORK WITH KATE POWELL The 80 AT editor of Down2Earth Magazine tells us about her fantastic job.
This issue, you could win £150 of vouchers giving you access to some of the country’s leading attractions! Head to page 30 for more.
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A roundup of the disability news stories making the headlines
Mencap puts forward business case for employing people with a learning disability
BRITAIN ELECTS MOST DIVERSE PARLIAMENT IN HISTORY
PEOPLE WITH A LEARNING disability are less likely to take time off work, are more loyal to their employer and boost staff morale according to a new report from learning disability charity Mencap. The report, ‘A systematic review of the literature on the benefits for employers of employing people with learning disabilities’, was put together to help encourage companies to employ more people with learning disabilities as part of the charity’s Learning Disability Week activity in June. At present, just 6% of people with a learning disability are in employment – compared to 75% of the general population. Mencap say that this isn’t good enough, and are calling for change. By giving employers the evidence that people with a learning disability make good staff members, and offering advice and information to help them through the employment process, they hope to make a change to this figure.
Mark Capper, head of employer engagement at learning disability charity Mencap, said: “Employer attitudes are one of the biggest barriers that people with a learning disability face when trying to get in to work. There’s often the presumption that people with a learning disability are unable to be a productive member of staff and will cost the business money in extra support. This research proves the opposite to be true. “With the right support and the right role, people with a learning disability can be valued members of any workforce – the hundreds of employers we’ve worked with tell us exactly that. We hope that by being able to show employers how having someone with a learning disability actually improves company reputation, can save time and money and boosts overall staff morale, we can encourage them to think differently about taking on staff with a learning disability.”
THE 8 JUNE general election saw a further two disabled MPs join the Houses of Parliament – contributing to the most diverse group of MPs in history. The addition of Labour’s Marsha de Cordova (MP for Battersea), who is blind, and Jared O’Mara (Sheffield Hallam), who has cerebral palsy, saw the total number of members of parliament with a disability rise to five. Marsha and Jared join Lib Dem MP Stephen Lloyd, who is deaf, and Conservative MPs Robert Halfon, who has cerebral palsy and osteoarthritis, and Paul Maynard, who also has cerebral palsy. Despite this progress, the five members still account for less than one per cent of all MPs – much lower than the one in five people of working age who have a disability. The new parliament also includes 52 ethnic minority MPs compared to 41 in the last parliament, 45 MPs who openly describe themselves as lesbian, gay, bisexual or transgender, and more female MPs than ever before – 208.
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Arts programme tackling disability prejudice wins national award
Boro launch new sensory room MIDDLESBROUGH FOOTBALL CLUB have opened the doors to their fully kitted-out sensory room with help from sensory specialists Experia. The club’s Riverside Stadium now houses a special area for fans with autism, learning disabilities and sensory processing disorders, enabling them and their families to watch the match away from the hustle and bustle of typical football crowds. The Middlesbrough-branded portable sensory unit was designed by Experia and features mirrors, lights, fibre optics, aroma diffusers and projectors. This goes with the
fidget boxes, sensory books and games which the club already had in place. The room was put together thanks to support from a number of charities, including the Shippey Campaign, which is calling on football clubs to include sensory rooms at their stadia for fans with disabilities. Yvonne Ferguson, Middlesbrough FC head of supporter services, said: “The equipment is fantastic and we are so proud of what we have achieved. The response from visitors so far has been incredible and the interest and support from parents and organisations has been amazing.”
A CREATIVE ARTS PROGRAMME bringing disabled and non disabled hildren and oung people together to reate ollaborativel has won a prestigious third se tor award reate, the ’s leading harit e powering lives through the reative arts, has won the harit wards’ rts, ulutre and eritage award or its reative onne tion pro e t he progra e sees S and ainstrea s hools work together with reate pro essionals to ake visual art, usi , fil and ore surve ondu ted b S ope and u snet in ound that our in parents o hildren with disabilities elt that their hildren rarel ’ or never’ got to so ialise with hildren without disabilities reate’s reative onne tion progra e seeks to hallenge that i k oulder, o ounder and hie e e utive o reate, said e’d like to sa a assive thank ou to all the parti ipants, o unit partners, artists, sta and unders who have ontributed to aking reative onne tion su h a su ess ul progra e e see ti e and again at reative onne tion workshops, oung people with o pletel di erent li e e perien es learning ro ea h other, developing e path and having a great ti e reating together e onsistentl listen to our parti ipants’ eedba k and learn ro ever workshop we run he rts, ulture and eritage ward is wonder ul re ognition o this ind out ore at www reatearts org uk
NATIONWIDE SEARCH LAUNCHED TO FIND NEW WRITING TALENT PUBLISHERS PENGUIN RANDOM HOUSE have launched a new talent sear h to find the best writing talent ro under represented ba kgrounds ow in its se ond ear, the rite ow pro e t will s our the ountr to bring the best writers ro diverse ba kgrounds to the nation’s bookshelves, in luding people with disabilities rite ow gives writers ro so io e ono i all arginalised ba kgrounds, writers, writers and writers with a disabilit the han e to attend regional workshops, with o the best being
sele ted to re eive entorship ro enguin ando ouse editors o eldon, o enguin ando ouse , o ented s the ’s nu ber one publisher, our ob is to tell the stories whi h aren’t o ten told hat’s wh with rite ow we are taking our tea s outside o ondon and into o unities to eet and entor aspiring authors e want to find and bring to li e writing that onne ts with all readers, bringing the best new under represented voi es to bookshelves ind out how to enter at www write now live
When Cerrie Burnell made her first appearance on CBeebies in 2009, it marked a new era in children’s television in terms of diversity – and the 37-year-old presenter, actor, author and playwright isn’t going to stop there. Cerrie sat down with Enable editor Lindsay Cochrane to talk about the next chapter in her career
If you want to tell interesting stories, diversity is how you ” make them authentic
PIC: © BBC/JOHN ROGERS
t was the end of an era for Cerrie Burnell when recently, she stepped away from the CBeebies studios to start afresh. Her time singing, dancing and telling tales on kids’ TV was coming to an end – so she could dedicate more time to a different type of storytelling. “When I had my daughter, she’s of dual heritage, so I was looking for picture books with children – particularly girls – that looked like her. And I could find
some – there’s the Gorgeous Grace series – but not really enough,” Cerrie explains. “I wanted to do something about that.” Cerrie published her first children’s book, Snowflakes, in 2013. It tells the story of a mixed-race girl, Mia, who is sent to live with her grandma in the countryside – and it all turns out to be a little bit more magical than Mia could have ever expected. Some might say that going from the bright and colourful world of children’s TV to children’s fiction is a natural step – and it couldn’t be more true for Cerrie Burnell.
appeared in shows like EastEnders, Grange Hill and Holby City, before writing her first play for children, Winged – A Fairytale, which she also starred in. Theatre was her first love – and then CBeebies came along. Cerrie joined the team in January 2009, when she became the channel’s first visibly disabled presenter. Cerrie was born with a right arm which ends just below her elbow. As a child, her parents encouraged her to wear a prosthetic, but she resisted, and by the age of nine, she wasn’t wearing one at all.
INCLUSION FIRST “I was always imagining I was a mermaid or something,” she laughs. “I think being a children’s author, you need to write about things that are very real or current, or you find a way of painting the world in a positive light – or a difficult light – through using magic. And that’s what I try to do. I try to write inclusively, but incorporating all the stories that I loved as a child.” Her debut picture book was followed by Mermaid, Ballet Dreams, and the Harper series, of which the final book will be published in the autumn. Her books are winning praise from critics, kids and parents alike – and it’s just the latest chapter of success in her varied career. A graduate of Manchester Metropolitan University’s acting programme, Cerrie
PREJUDICE And this is something which made the headlines when she made her CBeebies debut – the BBC received a number of complaints from parents, claiming their
INTERVIEW children were ‘scared’ by Cerrie’s arm. “It didn’t really affect me on a personal level,” she reflects. “But if a new black presenter started and there were racist remarks, it’s not a personal attack. It’s just someone trying to exercise their ignorance. I was really grateful to be given the opportunity to speak about it publicly, because it’s a prejudice that isn’t often addressed openly.” By continuing to present diverse characters in her books, there’s a good chance Cerrie will play a big part in tackling these prejudices. There’s a reason why kids warm to Cerrie – on TV, in her writing and as we speak on the phone, she exudes a genuine warmth, and a real passion for her work. Her latest book, Fairy Magic, is another shining example of Cerrie doing what she does best – it’s truly magical, and, above all, inclusive. “Fairy Magic is about a little girl called Isabelle and she’s hearing impaired,” Cerrie says. “She lives in a very noisy house, full of brothers and sisters who are playing drums and things. She wears a listening headband, like a hearing aid, to help her hear. She finds when she takes it off, everything’s a bit more peaceful and a bit more ‘her’. She goes into the woods, and she discovers that, when she doesn’t have the headband on, she can actually feel fairies, she can communicate with them. She then has a little fairy adventure!”
TIME Her writing career isn’t the only reason why Cerrie made the decision to step down from CBeebies. As well as the fact that she no longer has to write on trains between home in London and filming in Manchester, it means she now has more time to spend with her daughter, Amelie, who is eight. “It’s hard for any working mum,” she says. “Not hard, but tricky. I’ve got huge support from my parents, but at the end of the day, it’s just me, doing it all. I’m a solo mum; it’s me and my daughter. I was feeling like I wanted to spend more time being still really.” Of course, hard-working Cerrie’s idea of stillness might differ from the rest of the population – but that might be what eight years of kids’ TV does to you. As well as writing, she’s going to be hosting events, presenting, and she’s working on a new YouTube channel for children, based around yoga and mindfulness.
“If you want to tell interesting stories, diversity is how you make them authentic,” she says. “I’d like to reach as many people as possible. I’d like to get more diversity on TV. That doesn’t mean myself – I’d like to write things that could then work to cast more disabled actors, for instance. Stories that are really interesting. I’d like to inspire other writers to do the same.” Because that’s the thing with Cerrie Burnell – whatever she does, wherever she goes, she knows that equality, diversity and inclusion will play a role. Whether people are identifying with her, one of her characters, or learning about the world around them, she hopes – and we know – that she can make a difference.
I try to write inclusively, but incorporating all the stories that I loved as a child
Fairy Magic by Cerrie Burnell is out now, published by Scholastic
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Understanding your Rights If you’ve been treated unfairly as a result of your disability, what can you do? We speak with a legal expert to find out more about your rights
eing asked to leave a venue because your autistic child is having a meltdown. Getting a job rejection because ‘you’re not the right fit’, but you know that your wheelchair scared the recruiter. Not being able to see your favourite team play because the Premier League club won’t part with the cash to put in a Changing Places loo. These are all examples of disability discrimination – and it’s happening across the UK every day. “Disability discrimination, in its most basic form, is when a person is treated differently – and less favourably – because they have a disability,” explains Sarah Woosey, a solicitor specialising in
discrimination law at Irwin Mitchell. But this isn’t something that you have to accept – if you feel like someone has treated you differently or unfairly, you have the right to challenge it, and make a change for disabled people accessing the goods or services after you. The key is to understand exactly what your rights are, what discrimination looks like and how to approach it. PROTECTED CHARACTERISTIC Disability is one of the ‘protected characteristics’ under the Equality Act 2010, so people, legally, cannot treat you differently because you are disabled. Yet it does happen. From education to
employment, access to goods and services to renting a property, and even on public transport, people with disabilities may find themselves being treated unfairly or at a disadvantage. This can happen in a few different ways. First of all, there’s ‘direct discrimination’. “[This could be when] someone is treated less favourably because of their disability – for example, if a school were to exclude a child from a school trip because they have a disability,” Sarah explains. “Indirect discrimination is where a provision, criterion or practice indirectly disadvantages those with a disability. For example, again in context of education, if a school has a policy in place to give detention to pupils who are late for school. This may impact on some disabled pupils if the reason for the lateness is related to their disability.” There’s also discrimination arising from a disability, which could, for instance, be an employer treating a person unfairly because they need time off for medical appointments. And then there’s failure to make reasonable adjustments. “The Equality Act recognises that there are some situations where disabled people will automatically suffer a disadvantage as a result of everyday events or practices,” Sarah explains. “As a result of this, organisations – those providing employment, services, education and others – are all under a duty to make reasonable adjustments for disabled people in an attempt to reduce or remove any disadvantage suffered. Failure to take such steps can, in itself, constitute discrimination under the Act.”
It is incredibly rare to come across organisations that deliberately set out to discriminate but instead, they fall foul of the law due to a lack of understanding over some disabilities and the adjustments needed DISADVANTAGE Recent research from the Equality and Human Rights Commission showed that disabled people are at a disadvantage in most areas of life. Children with disabilities perform less well at school, people with disabilities are less likely to be in work. This is, in some cases, because of discrimination. “How a person would challenge such discrimination and whether they have a legal claim depends on the context of the discrimination itself,” Sarah explains. “It would be important for individuals who feel they have been discriminated against to seek specific advice. Advice and information on disability discrimination is available from a number of sources such as a range of charities, solicitors, advice centres and other organisations like the Disability Rights
Commission and the Equality and Human Rights Commission.” It is, in some ways, sadly unsurprising that people are discriminated against because of a disability. A recent report from disability insurance specialists Fish Insurance showed that there is still a lot of prejudice towards people with invisible disabilities – 39% of people, for instance, think that those who can walk shouldn’t be allowed to park in accessible parking bays, despite having a blue badge. And this is despite the majority of impairments being invisible – just 8% of disabled people use wheelchairs. Understanding of disability is still, in some ways, behind where it should be. People can, either consciously or subconsciously, discriminate as a result – and unintentional discrimination is still against the law. “My own experience dealing with these cases is that it is incredibly rare to come across organisations that deliberately set out to discriminate but instead, they fall foul of the law due to a lack of understanding over some disabilities and the adjustments needed,” Sarah adds. “My view is that organisations should ensure their staff – at all levels – have access to good quality and up-to-date training on both equality legislation and disabilities themselves in order to try and minimise the number of claims made involving discrimination.” The Queen’s Speech, launching the new parliament at the end of June, addressed the issue of discrimination, with Her Majesty saying: “My government will make further progress to tackle the gender pay gap and discrimination against people on the basis of their race, faith, gender, disability or sexual orientation.” And while it’s positive that this is even on the agenda, whether or not the government follows through remains to be seen.
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Adam Pearson is an award-winning actor, presenter and campaigner. He was born with neurofibromatosis, which causes non-cancerous tumours to grow on nerve tissue – and he’s been the victim of bullying and hate crime all his life. Here, he tells Enable how it has affected him, and what he’d like to see change for people with disabilities
isability hate crime is targeted aggression or hostility aimed at someone based upon their disability, perceived disability or association with disability. This aggression and hostility can include anything from verbal abuse to physical harm. I’ve been somewhat fortunate in that I have never been assaulted for being disabled, though many people have. Due to the highly visible nature of my disability, my main experience has been name-calling and terms of derision being yelled at me from across the street. I remember on one occasion I was filming something for Channel 4 and midway through a gentlemen came up to me, called me a “f**king monster” and then threw a fizzy drink at me, and yelled: “F**king freak.” FRUSTRATING The frustrating thing is that everyone that says something probably thinks they are being really clever or really cool. The sad fact of the matter is that I’ve heard it all before. I, along with many members of the disabled community, am slowly but surely getting accustomed to such treatment,
and whilst the legal landscape for such hate crimes is improving, it is still a sad state of affairs. I’m at the point now where it takes a great deal to actually bother me. Whilst I’m by no means excusing criminal behaviour, over the past 32 years I’ve developed a thick skin, so if people want to hurl playground tactics in my direction they are more than welcome – I’ve never been one for shying away or crying about it. In fact, I feel sorry for the perpetrator – what must be going on in someone’s head in order for them to commit such actions, regardless of their disability? SPEAKING UP Reporting of these crimes is paramount to having them resolved. I encourage all people with disabilities to know their rights and exercise those rights. As a disabled person, I am aware that when it comes to the law and the upholding of that law the buck very much stops with me. If I am unaware of my rights, how on earth can I expect anyone else to be? I think a lot of disabled people don’t report hate crime because they either don’t know what hate crime is, they have
On one occasion, a gentleman came up to me, called me a ‘f***ing monster’, and t re a drink at me
gotten used to that kind of treatment or they don’t think the police will do anything so they simply don’t bother reporting it. While the system is improving and police are becoming more and more efficient in how they deal with disability hate crime, the system is still far from perfect. Any kind of change in society requires action. It’s a very hard time to be disabled in 21st century Britain, with cuts coming left, right and centre – it almost feels as though disabled people are being scapegoated for failings that have nothing to do with them. Unless we stand up and exercise our rights, nothing will change. Einstein said that the definition of insanity is doing the same thing over and over and yet expecting a different result. Maybe then it’s time for a change?
* AS TOLD TO LINDSAY COCHRANE. PIC © ANDY WEEKES
‘Unless we stand up and exercise our rights, nothing will change’
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Takea Break We all deserve some time off now and then – and it’s just as important for carers and disabled people, if not more so. We take a look at the importance of short breaks and respite, and what the real benefits are
s the summer holiday season approaches, conversations often take a similar route. “Going anywhere nice this year?” “We’re off to Mallorca in a few weeks.” “I just can’t wait to get a break.” But for some, the idea of a getting a break like this is even more appealing – and much more in-demand. For carers and people with disabilities, a change of scenery is more than just a getaway. It has real therapeutic benefits. “A short break is not just a holiday,” explains Colin Brook, communications manager at charity Revitalise, one of the country’s leading providers of short breaks and respite. “Its effects are felt
beyond that. They really do help maintain the relationships between the carer and the cared-for person. If that breaks down, statutory services may intervene and the whole thing can get very messy.” VARIETY Revitalise have been providing short breaks for people with disabilities and carers for over 50 years. In that time, they’ve worked with people with 150 different conditions, providing accessible accommodation, exciting excursions and a great variety of activities, all with 24-hour on-call nursing support and help from volunteers. And their services are crucial. Research published by the charity in April found that a third of carers haven’t had any significant time off since beginning their caring role. This has a real negative impact on mental health, physical health and general wellbeing – both for carers and cared-for people. “A recent piece of research we did revealed from talking to our guests that 96% agreed that proper respite breaks are essential to maintaining a good caring relationship,” Colin explains. “The problem is that the majority of carers, we
96% of Revitalise guests agreed that proper respite breaks are essential for maintaining a good caring relationship found, aren’t able to access proper breaks away from caring. There are a number of reasons for this – guilt, for one. Actually handing over to someone else is a huge thing. But we found that, if we make it plain that the person they’re caring for is going to have a proper holiday, as well as the carer, those negative feelings tend to dissipate. It means that both parties can actually relax and have a proper break.” SOMETHING FOR ALL Revitalise are one of many organisations offering short break and respite care across the UK – and there’s bound to be something out there that will meet your needs and interests. Whether you’re after a seaside break, time away with your whole family, a solo voyage of discovery or the chance to meet new people, there are charities and organisations out there making it happen. Many local authorities will fund short breaks as part of your care package – it’s just a matter of getting assessed and speaking with your contact about your wants, needs and what will work best for you to get something lined up. “We hope that service users go home re-energised, in a more positive frame of mind, feeling better about themselves and others, and as if they’ve been included in a social sense, but also hopefully having experienced new things – seen some new places and tried new things,” Colin adds. “That’s the aim – as much as is practical, we want to give our guests what anyone else would expect from a good holiday.”
Our experience George and Maureen George and Maureen have been married for 43 years. Maureen has been living with Alzheimer’s for more than six years and George is her full-time carer. They have been Revitalise guests for three years. George explains: “Our breaks at Revitalise are very important for me. I look forward to it. It gives you a break from home, from the routine – the cooking, washing, cleaning, bed making. I don’t have to do it here, that’s why you get the break; you need that break. “Here, I get help with Maureen. They look after her, even when I’m out or going for a run, or when we’re going to the pictures together. I don’t have to worry and I can’t do that at home. “I need this. It helps me recharge the batteries. I can relax and have a drink, and I know most of the carers and they know me. We have a chat and a laugh and it gives you that joy.”
Lesley and Graham Graham’s stroke had a huge impact on him, his partner Lesley and her son, Oliver. Lesley now provides round the clock care for Graham, who recently had a break with Revitalise. Lesley says: “For four years, I have always looked after raha . t is di cult for both of us, as I also have my son to care for. I thought, not only would a break do Graham and myself the world of good, but be important for Oliver too. “It was a very relaxing week and to be honest, I felt I needed the break more than Graham. Things get on top of me
and I feel isolated. He got spoilt rotten! “He really enjoyed choosing where he wanted to go, what activities to do and all the socialising. He has made friends and loved the carers and volunteers who looked after him, and got to know them really well. I asked him if he missed me, and he told me he’d missed my nagging – I knew then that he was back to his old, cheeky self! “I don’t know what we would have done for a break if Revitalise didn’t exist. It was a well-needed break for myself and a great, positive experience for Graham.”
FIND OUT MORE
For more information on Revitalise’s three centres in Chigwell, Southampton and Southport, head to the website, www.revitalise.org.uk, or call the tea on to find out ore about how ou an get involved
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Heads together for
Mental health This year, one in four people will experience a mental health problem in the UK. People from all walks of life can be affected and in turn experience discrimination because of their diagnosis. As more charities, celebrities, and people with lived experience share their experiences, it is time to spread the word that mental illness is as important as physical illness
tarting the mental health conversation can be uncomfortable and induce fear of potentially upsetting a loved one. In fact, talking is the first step in opening the doors to relevant medical assistance. Discussing mental health openly increases knowledge and acceptance of mental illness, quashes myths, and removes the stigma that is still in place.
* TIME TO CHANGE NATIONAL ATTITUDES TO MENTAL ILLNESS SURVEY, DECEMBER 2016
BRAVE FACE Mental health expert Paul Scates not only works to help others, he is also a service user. Having experienced psychosis since the age of nine after surviving many years of abuse, Paul is refreshingly frank about his mental health journey. After attempting to take his own life at the age of 16, Paul explains that not being able to vocalise negative thoughts can lead a person to despair. “Even now, I look back and I question, was it that I wanted to die? Yes, at that moment, but actually had somebody said to me, ‘Paul, is it that you just want to stop the pain?’ I think I probably would have understood that is what I wanted to do and death felt like the only answer,” he says. Holding in emotions and putting on a ‘brave face’ was once seen as the norm from a lack of mental health understanding and stigma. From people with lived experience, including celebrities, openly discussing their mental health journey, there has been a significant change. CELEBRITY TOUCH In June of this year Ant McPartlin, from the presenting duo Ant and Dec, announced that he had checked into rehab for depression and addiction, while in April, Prince Harry revealed he has had counselling following his mother’s death. Spokesperson for mental health charity Mind Sophie Rawlings says: “The day after [Prince Harry] spoke out about his counselling experiences, that was our second busiest day on our information line. We had a 38% increase in calls. It just goes to show the more people are talking about it, hopefully the bigger change can be made.” In 2016 The Duke and Duchess of Cambridge and Prince Harry started the Heads Together campaign in an effort to end mental health stigma and discrimination – in turn discussing their
By Harry being so brave to disclose his own journey, it shows people that mental health is nondiscriminative, it affe ts e le r all al s li e
to what a person would if they had poor physical health. “A lot of work needs to be done to make sure that both physical health problems and mental health problems are dealt with in the same way,” explains Sophie. Since Time to Change began, over 4 million adults have improved attitudes towards people with mental health problems – that’s an improvement of 9.6% between 2008 and 2014*.
REACHING OUT Getting the relevant help and advice is essential; but even then, opening up to a GP can cause a great deal of distress. Sophie says: “Its better to ask for help own mental health journeys. The Heads early on to stem the problem; get the Together campaign has successfully help that you need to get on the road to started the mental health conversation recovery quicker. GPs are usually the first in the UK and even won charity of point of call for any physical or mental the Year for the 2017 Virgin Money problem, it is important to remember they London Marathon. are used to dealing with these types of Running the London Marathon situations. One in three GP appointments alongside his father for Young Minds – the have a mental health component, which I UK’s leading charity championing the think a lot of people don’t realise.” wellbeing and mental health of young GP appointments, counselling, people – Paul adds: “By Harry being telephone and text helplines, online so brave to disclose his own journey, it information – there are vast amounts of shows people that mental health is nonservices available for those struggling with discriminative, it affects people from all mental health problems. Speaking out walks of life.” will not only help others but provide support. TIME TO CHANGE Natalie says: “Depression can Discussing mental health rob you of time, that’s why the openly is the key to change. more support you get the more The anti-stigma campaign you can do – you’re living and Time to Change – started in not just existing.” 2007 by Mind and Rethink “I always say that mental ADVICE Mental Illness – works health has opened up a Paul Scates is happy to to change attitudes whole new world. It’s made be contacted via Twitter towards mental health. me who I am and I’m very @paulscates for those Natalie has lived with proud of that,” Paul adds. looking for further depression and anxiety Starting a mental mental health since she was little, and at health conversation can be advice. times had panic attacks so difficult, but it will battle the severe she was admitted into discrimination and myths that still A&E; she is now a Time to Change surround mental illness. Know that it is champion. acceptable to ask, ‘How can I get help?’ As a champion, she has lived – it’s the first step to squashing mental experience of mental health problems health stigma and saving a life. and campaigns to end discrimination in her community. Through counselling and i FIND OUT MORE volunteering, Natalie is more confident For more information on any of the in explaining how she feels. She says: “I charities mentioned or to get more just say if I don’t feel too good, or I feel a information on how to get help, visit the bit anxious or nervous, I feel down, I’m Heads Together website, having negative thoughts and I just need www.headstogether.org.uk a bit of time to myself.” It’s very similar
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Challenging Disability through Outdoor Adventure The Calvert Trust has been delivering outdoor adventure breaks for adults and children with disabilities in the beautiful surroundings of the Lake District National Park since 1976. Whether you are looking for new experiences and to meet new people, or just active holiday fun with friends and family, we have something amazing to offer you. To find out more, including dates and availability, call us on 017687 72255
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In the north of England, the Lake District offers perfect, unspoiled scenery and lots of fun outdoorsy activities. The Calvert Trust’s fantastic Lake District centre (www.calvert-trust.org.uk/lake-district) has accessible outdoor activities, including sailing, canoeing and kayaking, climbing and abseiling, horse riding and hill walking. The centre, including accommodation, is all fully accessible and specially trained staff are onhand to make sure you get the most from your break. If the sun’s shining, there’s nowhere better than the Lake District, and the region is home to more than 40 accessible walking routes across the National Park. You can get more information at www.lakedistrict.gov.uk. Coniston Boating Centre is based on the district’s third largest lake – and they have an electric wheelchair accessible boat available! It has an adapted, moveable ramp which can accommodate up to six wheelchair users. Great for anglers!
Not only is it incredibly picturesque, but Chester was the first British city to win the coveted European Access City Award due to its commitment to ensuring that the historic city is as accessible as possible. There’s plenty to do in Chester. The city’s magnificent 1,000-year-old cathedral (www.chestercathedral.com) is full of history,
fascinating artefacts, and it’s a truly stunning building. They’ve got a mini cathedral built out of LEGO too! Entry is free, but donations are welcome, and there are good access features, including accessible loos and an induction loop. Venture outside of the city centre to check out Chester Zoo (www.chesterzoo.org). Carers go free, and there are over 100 accessible parking bays close to the main entrance – and the zoo itself is fully accessible, so wheelchair users and those with limited mobility need not worry. The zoo is home to 15,000 animals, and 125 acres of award-winning gardens. Get up close with meerkats, gorillas, tigers, turtles and lots more – it’s a brilliant day out. For a more leisurely pace, cruise the River Dee on a sightseeing boat tour. The Lady Diana and Mark Twain boats run by ChesterBoat (www.chesterboat.co.uk) take visitors on a gentle cruise through the city, from a halfhour cruise to a two-hour expedition. There’s a ramp to help wheelchair users aboard, but take note that there’s not an accessible bathroom on-board – although there is one located near the boats’ landing stages.
Visit BRITAIN When it comes to summer holidays, you don’t have to shell out for a fortnight with the family on the Costa del Sol. Good old Blighty has enough beautiful beachfront destinations, stunning cities and cracking countryside retreats to provide a holiday to remember for all the family – and access is a lot better than you’d think. We’ve rounded up some of the hotspots worth visiting this summer across the UK 24
On the east coast of Scotland, you’ll find St Andrews – the home of golf, the birthplace of a royal romance, and home to plenty of picture-perfect cafes, restaurants and hotels. If golf is your thing, St Andrews Links Clubhouse (www.standrews. com) has good disabled access – and disabled golfers can request a buggy for use, with a qualified caddie driver. You get the buggie for free, but you have to pay the appropriate caddie fee. St Andrews Castle (www. historicenvironment.scot) offers a multi-sensory experience, and while the ruins aren’t perfect in terms of access, there’s lots of information available online to help you make your trip, and certain adaptations
have been made to make it more accessible, including handrails. If you fancy a wee dram of Scotland’s national drink (Irn-Bru aside), then head to Kingsbarns Distillery, just 15 minutes’ drive away from the town centre. With step-free access, lifts to the tasting room and distillery itself, and wide corridors, this four-star visitor attraction is well worth the trip. You can find out more at www. kingsbarnsdistillery.com. Take a trip outside of St Andrews itself and head to the pretty village of Anstruther. Just nine miles from St Andrews, this quaint fishing town is famous for – you guessed it – its fish and chips. So grab yourself a fish supper, park yourself by the sea and enjoy!
REMEMBER Before booking your break, always do your research and call ahead with accommodation, restaurants, cafes and attractions to make sure your needs can be met.
For a traditional seaside family break, look no further than Great Yarmouth. With its very own Pleasure Beach to rival that of Blackpool, some of the best chippies going and even some beach wheelchairs to get you out on the sand, it’s got all the makings of a great beach holiday – sadly, we can’t guarantee the weather! There’s plenty to do in Great Yarmouth beyond the beach. The Sealife Centre (www.visitsealife. com/great-yarmouth) has good disabled access – meaning anyone can come face-to-face with a shark! With penguins, crocodiles, rays, and more fish than Finding Nemo, it’s a fascinating day out.
In nearby Norfolk, the 85-acre Dinosaur Adventure park (www. dinosauradventure.co.uk) is great for kids, with huge lifelike dinosaurs set amongst all their favourite playground equipment. Parts of the park can be difficult for people with mobility needs, so call ahead to discuss your requirements. Also in Norfolk, the Blue Valley Railway (www.bvrw.co.uk) is a must-see for train spotters. The old-fashioned steam trains have wheelchair accessible carriages, meaning nobody has to miss out on this brilliant experience. The 18-mile railway runs between the historic market town of Aylsham and Wroxham, taking about 45 minutes.
The nation’s capital is jam-packed with things to do for those with access needs. The Science Museum (www.sciencemuseum. org.uk) has lots of fascinating exhibits and interactive displays – and it even runs ‘Early Bird’ and ‘Night Owl’ sessions for people with autism. Buckingham Palace (www. royalcollection.org.uk) is a huge draw for tourists – and during the summertime, it’s open for visitors. Obviously, you won’t be rooting about Her Majesty’s bedroom, but certain parts of the palace are open to visitors. You’ll find step-free access through a separate entrance at the front of the palace, and any assistance must be pre-booked.
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If you’ve got a thing for celebrities, Madame Tussauds (www.madametussauds.com/ london) has the next best thing! Check out some lifelike waxworks of your favourite stars, from Lady Gaga to Zoella. Only three wheelchair users can be hosted at any one time due to safety reasons, so book your slot in advance – all of the galleries are accessible apart from the Spirit of London ride. Carers get free entry too. You can’t go to London without a trip to the theatre. Theatres are becoming more inclusive, with better facilities for those with access needs, including special ‘relaxed’ performances on offer for people with autism and learning disabilities and even captioned, signed and audio described performances. Shakespeare’s Globe (www. shakespearesglobe.com) will have a relaxed performance of Twelfth Night on 27 July, and one of King Lear on 14 September – and there are audio described, captioned and signed performances scheduled in the coming months too. The Lion King (www. thelionking.co.uk) will have a captioned show on 27 August, Aladdin (www.aladdinthemusical. co.uk) will have a signed show on 5 September and a relaxed performance on 22 August, and Matilda (www. matildathemusical.com) will have an audio-described show on 9 July.
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FFION’S FAMILY ADVENTURE Family Fund is the UK’s largest charity providing grants to families raising disabled or seriously ill children and young people. They distribute grants for family breaks, computers and tablets, sensory equipment and much more help to ease the added pressures that many families face. our ear old fion has been diagnosed with autis She loves being a tive and pla ing outside, but an find it di ult to ope in bus or nois environ ents, whi h eans the a il struggle to get out and about together er u , egan, applied to a il und or a break, and the a il hose a trip to evon e had an absolutel a a ing ti e, egan sa s t was so ni e, not ust to have a holida , but to get to spend so e ti e together as a a il , going swi ing, getting ess , running about and ust doing a il stu e got up to all sorts, eeting deer and lla as, but fion’s avourite bit was definitel the swi ing e didn’t know how she ight rea t to a totall new environ ent, but we ust took the plunge e didn’t need to worr she got stu k in and had a great ti e nowing that fion reall en o ed hersel and that she an ope with being awa ro ho e reall gave us a assive onfiden e boost as a a il e’re reall happ that a il und gave us the opportunit to have su h a great e perien e ou’re raising a disabled or seriousl ill hild, find out ore about how a il und ould help b visiting www a il und org uk ou an also all the tea on , e ail in o a il und org uk, or find the harit on a ebook a ebook o a il und , witter a il und and nstagra a il und
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Visit the Royal Shakespeare Company for Captioned, Audio Described, BSL and Relaxed performances A great day out for all ages. Watch a show or take a behind-the-scenes tour. Discover 100 years of theatremaking in the permanent exhibition, The Playâ€™s The Thing. Take in views from the Tower or enjoy delicious food at the Rooftop Restaurant. FIND OUT MORE AT WWW.RSC.ORG.UK/ACCESS
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ACCESSIBLE FESTIVALS Going to a festival has always been a rite of passage, and for some it becomes an annual pilgrimage to the Pyramid Stage. Tackling a music festival with a disability can sound like a muddy mess, but as more and more big-name events make accessibility a priority, thereâ€™s no reason not to get down to the front and scream along with your favourite band
rom purchasing those golden tickets to camping and having fun with friends and family, thereâ€™s no better way to spend your summer than at a festival. As more organisers become savvy to the importance of accessibility for those with learning, sensory or physical disabilities, festivals are advancing their disabled access and facilities to guarantee that everyone has the best time possible. ATTITUDE IS EVERYTHING Ensuring festivals are as disability-friendly as possible is an important step towards guaranteeing everyone will have the best festival experience. UK-based charity Attitude is Everything have partnered with many leading festivals and events to oversee their practices when it comes to accessibility. Fully independent and part of the Arts Council Englandâ€™s National Portfolio, Attitude is Everything encourage major events to go above and beyond the legal obligations for deaf and disabled customers as outlined in the Equality Act.
Without a doubt, the festival that everyone has dreamed about going to is Glastonbury. Not only does it promise the biggest names in music, an eclectic array of cultural performances and standout light shows from the one and only Arcadia, Glastonbury is arguably one of the most accessible festivals around. Glastonbury have upped their accessibility in more ways than one since partnering with Attitude is Everything in 2005. Making their 2,000-acre green field as accessible as possible from the moment of purchasing your day or weekend tickets, disabled attendees are well catered for. Those with a disability who may need extra assistance can apply for a free ticket for their PA or carer to attend the festival alongside them. With accessible shuttle bus services to the festival, accessible campsites, accessible shower and toilet facilities and wheelchair charging points, all eventualities are thought through at Glastonbury.
Keen to set the bar when it comes to accessibility, Glastonbury has, historically, had BSL interpreters appearing at the side of the stage during many big performances – a wonderful way to ensure everyone gets the most out of the festival. There is no surprise then that this year Glastonbury partnered with the Royal National Institute of Blind People (www. rnib.org.uk) as their official health charity. TOP FEATURES Alongside Glastonbury, lots of other bigname summer festivals are leading the way for a higher standard of accessibility. Live Nation is one of the largest music organisations in the world and the brains behind some of the UK’s most popular festivals and events – with accessibility at the heart of what they do. Arranging Download and Reading and Leeds, Live Nation know how to do festivals better than anyone else. Bringing gig-goers the likes of Kasabian, Aerosmtih and Biffy Clyro, when it comes to bigname stars, they’ve got it in the bag. And accessibility? Live Nation’s festivals definitely don’t fall short. Providing similar facilities to the iconic Glastonbury festival, Download has a well-established accessible campsite located 50 metres from the disabled car park. There’s tarmac on-site to avoid braving muddy grass, food and drink stalls within the campsite and a ‘Happy to Help’ initiative, with disabled access signs across the festival. From the car park to the main arena accessibility is thought about from all angles.
TICKETING Ensuring those with a disability have the best festival experience possible, you can let the organisers know about your needs from the point of purchase. Download, Glastonbury, Reading and Leeds and many more festivals have a designated form for disabled ticket holders. After purchasing a ticket, you can then go on to request a free PA ticket and apply for specialist access in the campsite and main arena. The deadline for Reading and Leeds’ Disabled Access Scheme – with relevant documentation – is Friday 21 July, and can be completed through the festival website. Music promotion company Festival Republic (www.festivalrepublic. com) also have an access database that holds an individual’s specific information and accompanying documents for three
years to make the process of registering for disability access schemes easier. ACCESSIBLE FACILITIES As Glastonbury leads the way with accessible facilities, the likes of Reading and Leeds, Latitude and TRNSMT are all following suit. Reading and Leeds, alongside Latitude, will allow you to apply for not only a free PA ticket, but you’ll be able to bring up to two extra people with you into the accessible campsite – after all, what’s a festival without friends? From starting the party beside your tent to providing a medication fridge, wheelchair accessible toilets and showers all the way to dedicated viewing platforms in the main arena, Reading and Leeds know how to impress. From free carer tickets to great campsite access, BSL interpreters to covered wheelchair platforms, accessible loos to disabled parking, it’s clear that disabilities are going to be well catered-for in the festival fields this year – now it’s up to you to get the all-important tickets. Going to a festival is your chance to escape and unwind while getting up close with the greatest acts around. With more and more big-name and independent festivals putting accessibility first, nobody is going to be left out this summer. Get to the front, throw your hands in the air and have the time of your life during a summer of fantastic festivals.
FIND OUT MORE
For more information on Attitude is Everything, visit their website: www.attitudeiseverything.org.uk
WIN £150 IN LEISURE VOUCHERS FOR A FAB FAMILY DAY OUT This issue, we’re giving away a brilliant Voucher Express gift voucher to help you have a summer holiday to remember
eeping the kids – and yourself! – entertained in the school holidays can be a chore. Which is why, this issue, we’re giving you the chance to try something a little bit different – we’ve got a Voucher Express Leisure Voucher worth £150 to give away. This great gift card can be used at a number of different tourist attractions, restaurants, shops and even holiday providers – making the summer holidays a whole lot more affordable. The UK is home to hundreds of brilliant attractions – and access is becoming better and better. The voucher is valid in a number of different locations, including: • • • • • • • • • • • • •
Bella Italia Pizza Hut Park Resorts Haven Butlins Premier Inn Champneys spas EDF Energy London Eye Madame Tussauds London Legoland Windsor 13 SeaLife Centres nationwide Thorpe Park Alton Towers… and more!
So what are you waiting for? Get entering now!
HOW TO ENTER To be in with a chance of winning, simply answer this question… Where is the UK Legoland located? A. Edinburgh B. Skegness C. Windsor Send your answer, along with your name, address, daytime telephone number and where you picked up your copy of Enable to: Voucher Competition, Enable Magazine, DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Or email your details to email@example.com with ‘Voucher Competition’ in the subject line. All entries must be received by 31 July 2017. Good luck!
TERMS AND CONDITIONS: All entries must be received by 31 July 2017. One entry per household. Winner will be drawn at random. Prize is £150 in Voucher Express Leisure Vouchers only. Each voucher is for use in a single transaction only; if a purchase is a lower amount, no change will be given (prize will consist of different denominations made up to the value of £150). Voucher cannot be refunded or exchanged for cash or other denominated vouchers, and cannot be transferred to another person. There is no cash or other alternatives. For full terms and conditions and details of all outlets that accept the voucher, head to the Voucher Express website, www.voucherexpress.co.uk.
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Look at the stars With a few political changes of our own ahead, have you ever stopped to contemplate what life is like for disabled people in other countries? Enable columnist Tim Rushby-Smith sheds some light on what life’s like for him in Australia, and the shift in support that’s ahead for disabled people Down Under
ig things are happening around disability in Australia at the moment. The country is midway through the rollout of the National Disability Insurance Scheme (NDIS), which sees national government taking over the funding of many services and resources for disabled people – services that were previously provided and administered on a state-by-state basis. One of the critical principals behind NDIS is that disabled people will have the autonomy over their own budgets (once they have been assessed and their needs identified). This is a great idea, providing people are given all the information necessary to be able to make informed decisions, otherwise it is less a case of being empowered and more a case of being thrown to the wolves, with some unscrupulous companies and individuals seeing NDIS as a cash cow.
DAMAGE suited to long-term improvements in All of which has led to tabloid headlines people’s circumstances or attempts to about ‘horse-whispering’ or prostitution change social perceptions. It’s easy to get being paid for by NDIS using tax dollars. sucked into a hierarchy of need, where Of course there is no evidence of such, an emaciated kid in a wheelchair plays and the NDIS statement refuting the better than a happy kid at school with his allegations was released swiftly. However, friends. it will not receive any coverage in the I am of the opinion that paying for tabloid concerned, and so the damage services and support for everyone is done by the story will remain. best achieved through taxation. It is a In the past, much of the service collective response, and it can be applied provision for disabled people in in a long-term strategic way that can Australia (as in many other benefit society as a whole. countries) has relied extensively on the FAIR AND SUSTAINABLE I am of the charity sector. But In terms of enabling this can create a disabled people to opinion that paying culture where need play a full and active for services and is a commodity role in society, this is support for that is necessary undoubtedly the everyone is best for fundraising, most sustainable, as achieved through which is not best well as the fairest. It will be interesting to taxation see if the wider social attitude over here moves from a perception of disabled people as ‘needy’ to ‘feckless’. The rollout of NDIS across Australia has been a bold political move, and one that could create a profound legacy of better social inclusion. What we just have to do is avoid being dragged into a gutter brawl over who deserves what, regardless of which country we are living in. It demeans us all. Looking Up by Tim Rushby-Smith is published by Virgin Books
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When Melissa Leavy was diagnosed with multiple sclerosis at the age of 12, her whole family’s lives were turned upside down. Melissa and her mum Theresa share their experience with Enable
eing a young person is hard. You’ve got school to worry about, friends to keep up with, social media profiles to keep updated, expectations to live up to – it’s not easy. But try being a young person with an unusual medical diagnosis on top of all of that. Melissa Leavy, from Downpatrick in Northern Ireland, was 12 years old when her mum noticed a turn in her eye. She took her to the optician, and they spotted damage to the optic nerve. “We went straight to the children’s hospital in Belfast,” mum Theresa explains. “They admitted her after a few hours and put her on steroids. Over the weekend, they did an MRI scan and a lumbar puncture, and on the Monday they said they were pretty certain Melissa has multiple sclerosis.” YOUNGEST MS is a neurological condition which is caused when your immune system doesn’t work properly. It affects the nerves, and symptoms vary from patient to patient. Most people are aged between 20 and 40 at the point of diagnosis, making Melissa one of the youngest people in the country to be diagnosed with the condition. “I didn’t really know how to feel,” Melissa recalls. “I was too young to understand it, but I knew something was wrong. My mum was always upset, and my dad was trying to calm her down and stop her crying.” Now 16, Melissa has spent the last four years dealing with relapses while trying to juggle school – she’s missed 232 days in total, and had to repeat year 11. “Since October past, the school have given me an iPad for my textbooks to be on instead of carrying them, and they pay for taxis to and from school,” Melissa explains. “I have a lift pass as well, and I’ve got a classroom assistant.”
“Keep your hopes up – one day there’s going to be a cure” STRENGTH Despite the hurdles, Theresa says that her daughter has shown incredible strength over the last few years – even on the worst days. “She’s been really unwell since February because she was changing treatments,” she says. “She was in a wheelchair, she couldn’t cut her food, she couldn’t walk, she couldn’t go to the bathroom on her own, she couldn’t stand. She was really, really poorly. But she’s amazing. She takes each day as it comes.’” i
Melissa’s positive attitude won her the accolade of the MS Society’s Young Person of the Year in 2016 at the charity’s annual awards. Melissa was whisked off to London for the ceremony where she got to meet celebrities and receive her award. Having been through so much at a young age, Melissa has one piece of advice for other young people who find themselves in the same boat: “Keep positive and keep your hopes up because one day there’s going to be a cure – that’s what I think.”
FIND OUT MORE
For advice, information, help and support around MS, contact the MS Society. Head to the website, www.mssociety.org.uk, or call the free helpline on 0808 800 8000.
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Understanding social care With so many options on the marketplace, what’s the best solution for you?
care guide The ins and outs of social care and support
We speak with a care worker and an individual receiving support
Hiring a PA
The benefits of becoming an individual employer – and how it’s done
The social care market is overflowing with options. Gone are the days of nursing homes and council carers popping into your home – now, there’s a solution to suit all needs and preferences. We take a look at some of the services you’ve got to choose from
SOCIAL CARE Understanding your options DOMICILIARY
t-home care is one of the most popular options for those who require support. This is when someone comes to you in your home to help with a variety of different tasks – whatever you need help with really. That could be getting washed and dressed, preparing meals, getting out and about – anything that’s important to you. It can take a few different forms. In all cases, a trained carer or nurse will come into your home – and they can be provided in a few different ways. They might be employed by your local authority, an independent agency, or it could be someone that you employ yourself – you can find out more about this on page 42. You can pay for your care yourself, use certain welfare benefits to cover it, or you may be issued a personal budget by your local authority to pay for it. Whatever your situation, request an assessment of need through your local authority and they’ll decide how much help you need, and whether or not you qualify for funding. The real advantage of domiciliary care is the fact that it lets you stay in your own home for longer, and you have a bit more choice and control. It’s also a cheaper option than residential care – something which is important in times of budget cuts.
esidential care is when you move into a special facility which will meet your care and support needs. In a care home, you usually have your own room and bathroom, with a communal living and dining area, as meals are normally prepared for you. Residential care is better suited to those with higher support needs, but care homes are becoming more flexible and adapt to users’ needs, so you can have as much independence as you want. Care homes are becoming more and more diverse, specialising in certain disabilities or healthcare needs, or offering unique services like home pets or even an in-house pub. Usually people who live in residential homes are unable to live
alone without supervision – typically, people with dementia, mobility issues, mental health problems or a variety of different health concerns. Residential care isn’t just for older people either – there are opportunities for people of all ages in homes across the country. Residential care is different to nursing care as it doesn’t have the specialist medical support that you would get in a nursing home. What you do get is personal care, activities, trips out, and companionship. Local authorities and private companies run care facilities like this, and they may be paid for out of your own income, savings or through funding allocated by your local council.
Care homes are becoming more e i le and ada t t users needs s u an a e as u inde enden e as u ant www.enablemagazine.co.uk
upported living establishments are a great option for people keen to maintain their independence but who need a bit more support than domiciliary care can provide. In a supported living scheme, you’ll have your own house or flat and you’re responsible for paying your bills, making decisions, cooking and cleaning – but there are staff on hand who will work to your personalised support plan and ensure that you’re meeting specific goals and living the life you choose. Traditionally, supported living
schemes were aimed at people who required lower levels of support, but things are changing and providers are starting to set up schemes for those who need a bit more help. You get to choose where you live, who you live with, and who supports you. There’s a lot of choice and control with supported living – the service is very much built around the individual. In most cases, you’ll rent your property, but shared ownership schemes are available. This can be paid for independently, or through a personal budget.
REMEMBER If you’re thinking of getting extra support, always ‘shop around’. eet ith di erent providers, and ask how they’ll tailor their services to meet your needs.
hared Lives schemes see individuals with support needs either move in with a local family or visit them on a regular basis in the form of short breaks or respite. It’s almost like fostering for adults with additional needs – and the results can be fantastic. Individuals will be matched with Shared Lives carers based on compatibility, and you really get treated like a member of the family, sharing meals, taking day trips and spending the night in front of the TV together. In the UK, 12,000 people use Shared Lives – half living with carers full-time, and the other half visiting for day support and overnight breaks. Find out more about Shared Lives at www.sharedlivesplus.org.uk.
hort breaks, or respite, are a crucial part of life for those who are supported at home by family or friends – both for carers and the cared-for person. Regular short breaks are good for the mental and physical wellbeing of everyone, or can be used to fill a gap in care if, for instance, your carer is going on holiday, has an appointment or a special event to attend. Short breaks can take a variety of forms. It could be a PA popping into your house for a few hours to let your carer get out to do some shopping; you could go to a specialist short breaks support facility either alone or as a family; you could use a Shared Lives scheme; or you might go stay at a supported living scheme or care home for a short spell. To find out more about short breaks, make enquiries with your local authority. You’ll be assessed, and if they feel you could benefit, it’ll become part of your care plan and you may receive funding.
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Do you employ your own PAs and carers?
Money for training for you and your PAs If you use your direct payment, personal health budget or your own money to employ your own personal assistant (PA), there are lots of training and qualifications you could do, and you can apply for money to help.
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More and more people are opting to use direct payments, a personal health budget or their own funds to employ personal assistants directly themselves. We found out more about how it works from Skills for Care
hen it comes to arranging care, choice and control are crucial – and few options offer as much choice and control as becoming an individual employer and hiring your own personal assistant. In recent years, hiring your own care staff to help you at home as opposed to using local authority or agency services has become increasingly popular. Usually, PAs are funded through local authority direct payments, or personal health budgets issued as a direct payment, and individuals are able to stipulate the type of person they’d like to work for them, what tasks and duties they’d like to do, and arrange shifts around their own schedule and preference. “Employing a personal assistant can really help people to live independently and in a way that they choose,” explains Carol Reeves, project manager at Skills for Care. “It enables the person who needs the care and support to live their personal and social life, as well as their professional life,
according to their wishes and interests. People don’t just have a personal assistant to support them at home – many have personal assistants to support them in the workplace too.” SUPPORT Hiring your own PA, or team of PAs, can be a lengthy process – but there is support out there to help you through. The likes of Skills for Care, or local support organisations, have lots of information and advice to help you through. The first thing you need to do, though, is put together a job description, outlining the duties and responsibilities of the role, and then a job advert to try and attract the right type of candidate. The job ad, Carol advises, should be about explaining who you are – and the sort of person you’d like to work for you. “It’s really important to make the job advert about the person who needs care and support, and make sure they get somebody who might like the same things
so they can work together and get along well,” she says. “It’s important for that to come across in any job vacancy advert. It needs to go, ‘This is me, this what I want to do, do you want to come and work for me?’ Advertising the job can be done in a variety of ways. Local groups, shop windows, places where people enjoy going. There are also online sites like Universal Job Match, organisations with PA sites, Jobcentre Plus, local authorities – it could go on. There’s lots and lots of places.” Once you’ve received applications, whittle it down to the people who interest you and arrange interviews. It’s wise to have someone accompany you to the interview to give you a second opinion and discuss the candidates afterwards. CHECKING OUT Interviews done, you can make a job offer to the person you’d like to work for you. Get hold of any documentation to prove their right to work, do background checks and get references – and this is when all of the legal responsibilities of an employer kick in. “The key thing is that you’ve got to keep accurate records, that you register with
Employing a personal assistant enables the person who needs the care and support to live their personal and social life, as well as their professional life, according to their wishes and interests 42
HMRC as an employer and make sure that you’re paying the right amount in tax and National Insurance,” Carol says. “As an employer, it’s your responsibility to make sure that things are done correctly. In addition, eligible staff will have to be automatically enrolled into a workplace pension. We’ve worked quite closely with the Pensions Regulator and they’ve got lots of information and support for people who employ their own PAs.” To pay your staff, you can either do this yourself using payroll software (and HMRC have some free software you can use) or use an external payroll company to handle it for you. Many people prefer to do the latter; it takes away a lot of the stress and it guarantees you get it right. You do have to pay a fee for these services, but it does make life a lot easier. With your team, you don’t have to worry about training or qualifications either – Skills for Care distribute funding to go towards the training and development
of personal assistants and individual employers, meaning you can send your PAs on courses that fit in with what you’d like them to be able to do. “Training will vary from employer to employer,” Carol says. “But we do see that people mostly ask for things like first aid, health and safety, moving and assisting, being a good employer, condition-specific awareness, as well as diploma courses.” CONTROL Employing your own PA gives you the opportunity to have more control with your care and support – and, beyond that, even gain companionship. While agency staff often visit you at set times and for a certain duration, PAs can be scheduled to come to you when it suits you and, budget permitting, for longer periods too. You can even employ PAs for specific tasks, based on their personality and experience – so you might have one PA who comes in the morning to help you get ready for the day
and get you washed and dressed, while another might accompany you for social outings. It’s really that flexible. “One woman we work with has said that although employing her own PAs takes time and dedication, for her, it’s the only path to true independence, choice and control,” Carol explains. “She calls her PAs the ‘dream team’ – she’s quite young, so she also employs a team that suits her personality. She’s taken them on holiday – she went on a round-the-world trip and they supported her to do that.”
FIND OUT MORE
Employing Personal Assistants Toolkit
Individual employer and PA information hub www.skillsforcare.org.uk/iepahub
We provide specialist services across England for people with physical and learning disabilities, acquired brain injuries, mental health needs and those who have experienced homelessness. We help people to live as independently as possible and lead fulfilling lives, whether through supported housing, residential care or floating support. Many services are registered with the CQC to provide personal care and support. 0330 1233 247 @SancSL www.sanctuary-supported-living.co.uk Sanctuary Supported Living is a trading name of Sanctuary Housing Association and Sanctuary Home Care Limited, both exempt charities.
Why do people with a learning disability and their families turn to us for support? Everyone has their reasons. But being the UK’s leading learning disability charity with a 70-year history certainly helps. Our quality services meet individual needs on a range of issues, including: • • • • •
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THE ULTIMATE GOAL or ootball an aul
Getting the right care set-up can be life changing – as Wisbech man Paul discovered after moving into a supported living scheme
ndependence is something we all strive for – and supported living schemes across the country are giving people with physical, learning and sensory disabilities the chance to achieve this. One person who knows this all too well is Paul, from Wisbech. Paul has learning difficulties, and lives in West Street, a supported living scheme run by Regard, an awardwinning care provider. West Street is designed for people with learning disabilities and associated mental health needs. The service has been completely redeveloped and refurbished to offer self-contained accommodation in three two-bedroom flats and a one-bedroom flat. INDEPENDENCE Since his arrival in October last year, staff have been working with Paul to identify which of his skills need developing, to help him access new opportunities and gain greater independence – by tapping into some of his own interests. “Since Paul joined us, we have been supporting him to learn to interact better with other people, and develop his independent living skills,” explains Gemma Watson, who leads the care team at West Street. “With support, he decided he’d like to enrol for some activities at Facet College in March, and now thoroughly enjoys going there every week to play footie and take part in art classes.” Devoted Manchester United fan Paul has been the star goalie for Facet Football Team, and regularly
participates in tournaments in Cambridge with the team. He’s also been using the art classes to get creative with his football passion, even creating a papier-maché model of Old Trafford. CONFIDENCE With support from staff, and encouragement to pursue his passion for the beautiful game, Paul’s confidence and abilities have soared. Staff at West Street have offered lots of fantastic, tailored support to Paul. They helped him go to the college and identify which courses and activities might suit him and his needs, as well as offering travel training to help him get to and from college. The team are continuing to work with him to develop his skills. “Both these things have given Paul an enormous sense of achievement, as well as an opportunity to socialise and With the meet new right support, people,” explains Paul has come Anne-Marie on in leaps and O’Sullivan, Paul’s bounds keyworker. “Before he joined us, he used to find interacting with others very challenging, but with the right support, he has come on in leaps and bounds.”
he egard roup o ers a range are solutions a ross ngland and ales, in luding residential are, supported living and spe ialist are servi es su h as autis or de entia are o find out ore about the di erent servi es on o er, head to the egard website at www regard o uk, or all the re errals hotline on o
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THE WORLD PARA ATHLETICS CHAMPIONSHIPS Your need to know
This July, London will be back in the parasport spotlight as the World Para Athletics Championships race their way back to the capital. But what have they got in store? Here’s the lowdown… The World Para Athletics Championships will be taking place from 14-23 July at London’s Queen Elizabeth Olympic Park. is is t e e ent s rst ear as t e rld ara t leti s it as re i usl n n as t e t leti s
This is also the first year that the championships have been held back-to-back with the IAAF equivalent in the same city.
e ara t leti s a i ns i s ta e la e e er t ears t e last e ent as in a atar in t er Around 1,300 athletes are expected to descend upon the capital with their eye on a gold medal.
A whopping 27 of our athletes have won medals at previous championships.
ere ill e edal e ents ta ing la e a r ss da s etiti n ents in lude all t e s rts u d e e t t see in an at leti s etiti n li e t e s t ut tri le u a elin t r rela ra es and dis us
The medals for the event were designed by Birmingham-based company Toye, Kenning and Spencer, and incorporate design features for visually impaired athletes to feel the details – there’s even braille on the rear marking out the host city and year.
e ritis tea eatures t e nati n s t at letes in luding a ulant runners eel air ra ers t r ers and u ers
Big names to look out for include Kadeena Cox, Jonnie Peacock, Richard Whitehead, Hannah Cockroft and the ‘Weirwolf’ himself, David Weir – and it’ll be his last event before retirement. aral i r ad aster annel ill e s ing ig lig ts r t e a i ns i s n and nline et re in r ati n at annel
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The secret to Paralmypic success? A pair of lucky pants and strawberry laces – and a whole lot of hard work and talent. Wheelchair racer Hannah Cockroft had a chat with Enable about her career so far
PIC: © ONEDITION 2016/PARALYMPICSGB
t 24, Halifax native Hannah Cockroft is much like most women her age. She enjoys shopping, going to the theatre, gigs – and she’s got a particular fondness for McFly. But that’s perhaps where the similarities end. In amongst these common pastimes, Hannah’s travelling the world competing against the world’s best wheelchair racers – and scooping up multiple gold medals along the way. One of Britain’s brightest parasporting stars, Hannah is the proud owner of five Paralympic golds, seven gold medals from the Para Athletics World Championships, two from the Europeans and two golds and two silvers from the IWS Junior Championships from the start of her career in 2011. Not bad going for someone who didn’t even know parasport existed until the age of 12. “I went to mainstream schools throughout my childhood, and I was always the only disabled child,” Hannah recalls. “That was fine; I was never treated any different to anyone else, except when it came to sport. I went to secondary school and one of the teachers brought in the local wheelchair basketball team. That was the first time I’d met another disabled person; it was the first time I found out what parasport was. I kept in touch with the coach, and went and started training with the Cardinals. I trained with them for three years, and during that time, they introduced me to wheelchair tennis, wheelchair rugby and I tried different things. Eventually, it came round to wheelchair racing.” RECORD HOLDER It was the beginning of something special for Hannah. As well as her collection of gold medals, she currently holds the Paralympic and world records for the T34 100m, 200m and 400m – and she’s hoping to push herself even further this summer at the World Para Athletics Championships in London. 50
“The whole team has been looking forward to getting back to London,” she says with an edge of excitement in her voice. “It’s where it all started for me – it was my first Paralympic Games.” Hannah is one of the best-known names in British parasport – and worldwide. Incredible given her parents were told she was unlikely to live beyond her teens. Born with cerebral palsy, Hannah sustained two cardiac arrests at birth, damaging two different parts of her brain. Her balance and mobility were affected, as well as her fine motor skills, and she has weakness in her hips, as well as deformed feet and legs. To look at her now and what she’s achieved is almost unbelievable for her parents – but not entirely unsurprising when Hannah speaks of her passion for the sport. “Wheelchair racing was my first opportunity to experience freedom and independence and speed and I just loved that,” she says. “It was always meant to be a hobby – I never meant to go the Paralympics. I’m the kind of person who, if I get offered an opportunity, I’ll take it. I just think, I might as well try it. So I did.” SUPERSTITIONS So how does a world-renowned athlete prepare for a race? Hannah’s methods are slightly more unconventional than most – but she’s terrified to deviate away from her routine. “I’ve got a lot of superstitions,” she laughs. “I’ve got lucky knickers and lucky socks – I always wear them. It’s a nightmare, trying to find these knickers that are falling apart. I’ve got lucky earrings. I always paint my nails to match
INTERVIEW either my kit or my chair. And I always eat strawberry laces before a race.” As well as hoping that her lucky pants will help her add to her medal collection this summer, Hannah is keen to see whether or not the Championships reignite the nation’s passion for parasport. Having witnessed first-hand the real enthusiasm for disability sport at the London 2012 Paralympics, and the years leading up to Rio, she says that things are, sadly, starting to change. “With London, there was a massive boom,” she says. “Everybody suddenly knew what parasport was and was interested in it, and really took it seriously. In those few years between London and Rio, it just carried on and carried on.
I’m the kind of person who, if get ffered an opportunity, ll ta e it
I literally could have done a different appearance every single day in those four years. Sadly, I think that that’s kind of died away. Since Rio, the excitement from London has disappeared a bit. Which is upsetting. We’ve really felt a difference since Rio – the whole team have – compared to what we had post-London. I hope that London 2017 can bring that buzz back.” SUPPORT The real perk of a home event is that Hannah’s family and friends will be able to come and see her compete. In Rio, just her mum, dad and best friend from university made the trip – but this time around, there’s going to be some serious support for Hurricaine Hannah in the stands of Queen Elizabeth Olympic Park. “It adds a bit of pressure as well to be honest,” she says. “You’re going out in front of all of these people who know how much work goes into it every day. You’ve got to put in a good performance and show them what it’s all about – show them it’s all worth it!” At 24, Hannah is really at the peak of her career – but being a sportsperson, unfortunately, isn’t a lifelong job. So what has she got planned once she hangs up her racing helmet for the last time? “I want to move into media, journalism,” she reveals. “I’d love to work in TV. I’m halfway through a journalism degree – I probably should finish that at some point! I hopefully have a few years in athletics left yet before I need to think about that but the media is what I’d like to move into.” With her passion, drive, determination and bubbly personality, we’ve got no doubt in our minds that it won’t be long before Hannah Cockroft is the golden girl of TV too.
For more information on the London 2017 World Para Athletics Championships, head to www. paraathleticschampionships.com
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Hobbies The variety of hobbies available for people with sensory issues, learning or physical disabilities is outstanding. Lovers of the great outdoors, sport enthusiasts or those with a passion for arts and crafts – there’s a hobby for everyone. No excuses for being glued to your TV all summer long…
aving a hobby is a wonderful way to pass the time, meet different people, learn something new, and possibly leave your comfort zone for a brand new experience. Disability doesn’t have to mean there are limitations in terms of what you can get involved with. No matter what your interests are, or if you’re looking to find something quirky and unique to get involved with, there is a plethora of fun and interesting activities out there for your entertainment.
PHOTOGRAPHY For creative types, getting involved in photography when you have a disability is perfectly plausible – even for those with sight issues. The Disabled Photographer’s Society (www.the-dps. co.uk) was formed in 1968 and is run by disabled photographers for disabled photographers. The charity understands that, with a few simple modifications, photography can be available to all. Offering adaptions for cameras,
training schemes and online lessons, struggling to find the right angle and lighting will be a thing of the past. Run entirely by volunteers, membership for the club comes with a small fee and grants you access to team galleries, forums, a quarterly magazine, and even the opportunity to gain a new qualification. Interacting with others with a similar passion will only make the process of learning how to take pictures more enjoyable.
FISHING Who said disability should stop you from catching a record-breaking salmon? Fishing requires patience and dedication – and with the help of the British Disabled Angling Association (www. bdaa.co.uk), there’s nothing holding you back. Founded in 1996 by wheelchair user Terry Moseley, the charity’s sole purpose is to develop opportunities for disabled people of all ages. Providing fisheries across the UK and working in far-off destinations including Thailand and Cyprus, whatever your location, going fishing is always an option. The charity also works to improve access and facilities, raise awareness of different disabilities, and adapt bespoke equipment. Providing accessible boats, wheelchair and scooter accessories, and other important fishing equipment – which can all be easily adapted – the British Disabled Angling Association is dedicated to getting everyone out on the water.
ARTS AND CRAFTS Getting dirty or wet outside is not everyone’s cup of tea. Thankfully there are many groups across the UK waiting for your arrival for a burst of creativity. Disability does not need to affect a love or passion for arts and crafts – neither, in fact, does blindness. The Royal National Institute of Blind People or RNIB (www.rnib.org. uk) provide lots of information on art groups available for blind or partially sighted people to get involved. Artists across the world come up with ingenious methods of continuing to
paint or learn how to paint through the help of classes. Just because you are blind or partially sighted does not mean you’re not allowed to join a sighted art class – building a rapport with your tutor and fellow classmates is important and can develop your art. The Living Paintings Trust (www. livingpaintings.org) is a wonderful organisation that produces raised, tactile images partnered with detailed audio descriptions of pictures. Open to children, young adults and adults and over 25 years of publishing experience in touch-to-see books, this organisation is excellent for both art and reading.
GARDENING If you can think of nothing better than breathing in fresh air, aren’t afraid of getting dirty and want the satisfaction of watching something develop, then gardening is for you. Embrace your green fingers and join one of the many disabled gardening clubs across the UK, or get your home garden adapted to suit your abilities. One of the leading gardening charities in the UK, Thrive (www.thrive.org.uk) understands how working in the great outdoors can improve lives. With four major regional gardening projects in Reading, London, Birmingham and Gateshead, the charity works on a basis of social and therapeutic horticulture. Also offering around 900 gardening projects across the UK, getting involved in gardening has never been easier. Gardening can enrich your life in many ways, by building strength after an accident or illness and reducing isolation by interacting with fellow gardeners and in turn raising moods. The act of purposefully getting involved with an activity makes gardening an excellent hobby for those experiencing a difficult period in their life. For those unable to attend one of Thrive’s gardening projects but who still want to get into growing their own plants, trees or vegetables, Gardening for Disabled Trust (www. gardeningfordisabledtrust.org.uk) can offer a helping hand. The Trust adapts private gardens to meet the specific needs of a disabled gardener, with special tools, raised beds, paving, wheelchair access and more so you get the most out of your garden. Membership for the Trust is free and it actively encourages members to get out and enjoy their gardens – regardless of ability.
• • • • • • • • • •
As we’ve discovered, there is a hobby for everyone’s tastes. From exploring the wonderful colours and textures of your back garden to getting wet and wild when fishing, and getting creative with arts and crafts and photography, there are plenty of accessible hobbies to discover and participate in. The options are limitless.
OVER TO YOU How do you like to spend your spare time? What hobbies would you like to hear more about? Email us, editor@enablemagazine. co.uk, with your view!
HAVE YOU A PROBLEM WITH DRINKING? ONLY YOU CAN DECIDE! To answer this question, ask yourself the following questions and answer them as Honestly as you can. 1. 2.
Is drinking making your home life unhappy? Does your drinking make you careless of your family’s welfare?
Have you lost time from work because of drinking?
Has your ambition decreased since drinking?
Is drinking jeopardising your job or business?
10. Have you ever felt remorse after drinking? 11. Are you in financial difficulties as a result of your drinking? 12. Do you crave a drink at a definite time daily?
Do you drink because you are shy with other people?
Is drinking affecting your reputation?
14. Does drinking cause you difficulty in sleeping?
Do you drink to escape from worries or trouble?
15. Do you want a drink the next morning?
Do you drink alone?
16. Do you drink to build up your confidence?
13. Do you seek an inferior environment when drinking?
17. Have you ever had a complete loss of memory as a result of drinking? 18. Has your doctor ever treated you for drinking? If you have answered “YES” to any one of the questions, there is a definite warning… If you have answered “YES” to any two, the chances are that you have a problem… If you have answered “YES” to three or more, you almost certainly have a problem…
“THE ONLY REQUIRMENT IS A DESIRE TO STOP DRINKING” Take action now and give us a call on 0800 917 7650… We are here to help!
800 PEOPLE PER WEEK ARE BEING TOLD THEY NO LONGER QUALIFY FOR THEIR MOTABILITY CAR…
IT’S TIME FOR CHANGE The Motability Scheme is a lifeline for many disabled people and carers across the UK – but the government’s raft of money-saving cuts has meant that fewer and fewer people now qualify, losing out on a vital resource that gives independence, freedom and choice. We find out more about the real impact of the move from DLA to PIP, and how Motability customers are suffering
or many, the world of buses, taxis and trains is their only method of transport. Dealing with inaccessible stations, buses without the space to take a wheelchair user, taxi fares that only seem to be going up – it’s not the best situation if you have a disability. It’s a choice between unpredictable access and pricey fares, and investing in a car. Car ownership simply isn’t an option for most – not without the help of the Motability Scheme. And the number of people qualifying for this kind of support is sadly on the decline. Since April 2013, the Department for Work and Pensions has been moving people from Disability Living Allowance (DLA) over to its new system, Personal Independence Payment (PIP). The two welfare benefits are similar in principal – they’re non-means tested, they are designed to help with the additional cost that disability often brings – but they differ in one major way. Fewer people qualify for PIP than DLA. CUTS It’s all been a part of the Conservative government’s raft of cuts, which is estimated to save the government £1.2 billion by 2020. With PIP, the goalposts have moved slightly
for the different levels of the benefit. For the higher rate of the mobility component of DLA, you had to be able to walk for at least 50 metres unaided. With PIP, this has been reduced to 20. This means that 428,000 fewer people will be eligible. One area which this has impacted upon is the Motability Scheme. The UK’s affordable car leasing scheme lets disabled people lease a brand new motor using their qualifying benefits – including the enhanced rate of the mobility component of PIP. As PIP is rolled out, DLA recipients are being reassessed, and as fewer are found to qualify, fewer will be entitled to a Motability vehicle. “PIP introduced a new process of assessment, and it also changed the amount of benefit that people were entitled to,” explains Laura Wetherly, policy manager at the MS Society and co-chair of the Disability Benefits Consortium. “Personal Independence Payment is assessed against a completely new set
of often tighter criteria. In many cases, it involves a face-to-face assessment – and fewer people with MS are qualifying for the highest rate of mobility under PIP than under DLA.” One person who found he no longer qualified when he was reassessed was Londoner John Stillitz. John, who was diagnosed with MS 10 years ago after 40 years of symptoms, relied heavily on his Motability car to get around – and was devastated when he got the call to say he either had to return his motor or buy it. “When I told my employer that I had MS, I was put down to two days a week rather than five, and my earnings went down dramatically,” John explains. “The car was very welcome – it became very important to me. It’s essential; it lets me lead a normal life. I can go to hospital appointments, get out with my family. Being told I didn’t qualify for it any more hit me for six.”
My Motability car is essential; it lets me lead a normal life. I can go to hospital appointments, get out with my family. Being told I didn’t qualify for it any more hit me for six John Stillitz
SACRIFICES Delving into his savings and his pension pot, John was able to purchase the car – but it has meant that he and his wife have had to make sacrifices, such as family holidays. Not everyone, however, is in a position to make this kind of financial commitment. “It’s not like I can’t afford to live, but I can’t afford any extras,” John says. “I’ve got the car now, but I’ve also got to pay for insurance and everything else. Everything is an expense – especially now that I’m retired. I feel frustrated for people who aren’t in a position to do the same – it’s a major expense. It’s an expense we could have done without. The stress that it’s caused has really not helped.” After being told you no longer qualify for the higher rate mobility component, many choose to appeal the decision – and it’s estimated that two-thirds of appeals are successful. With the help of Citizens Advice and his local MP, John was reassessed, and
told that he now in fact qualifies for the higher rate – a real frustration given that he has already purchased his car. Until February of this year, the Motability vehicle was taken away from customers during the appeals process – it’s estimated that 800 people a week were losing access. And the vast majority? They were having it handed back when their appeal was successful. STRESS “The MS Society feel that extending the Motability Scheme is a welcome but small step towards a fair welfare system, and making sure it makes sense for people with MS,” says Laura. “We know that many people with MS and other disabled people rely on their cars, and they’ll be relieved that they can now avoid the stress and expense of losing their cars, only to have them returned after a lengthy and stressful appeal.” The MS Society are calling on the
government to rethink the assessment process for PIP, to take into account conditions like MS which can fluctuate, and to rethink the 20-metre rule. “We think that the application processes need to be improved to reduce the stress and anxiety throughout the process,” Laura adds. “So that people with MS and other disabled people can rely on the support they need without the unnecessary burden and fear of having it taken away.” While pleased to have been approved for the higher rate mobility component, John is frustrated by the stress that he had to undergo to get to this point. So what’s his advice for those facing the loss of their Motability car? “Get help. Turn to people for advice like I did,” he says. “Citizens Advice were amazing. Do some research. Don’t be embarrassed when it comes to the interview. In my second interview, I wasn’t holding back. Don’t be ashamed. Discuss any problems you’ve got. You’ve got one chance to be open and honest with these people.”
FIND OUT MORE MS Society
Disability Benefits Consortium
disabilit benefits onsortiu wordpress.com
Did you know that travelling from Land’s End to John O’Groats in under 24 hours is possible, thanks to public transport? And services are, slowly but surely, starting to improve for customers with access needs. We take a look at some of the companies going the extra mile
Ato B N
o longer will parking meters and parking spaces be an issue. Waiting on a lift from a friend is also a thing of the past – increasingly accessible public transport is here to entice you into a world of adventure. Thanks to the Equality Act (2010), bus and other public transport services must uphold certain regulations. The Act means that all public transport services must have handrails, disabled areas, and lifts in stations alongside tactile paving for people with sight impairments to ensure smooth travelling – and providers are making big moves to meet legal requirements.
As with buses and coaches, trains in the UK follow the set regulations, and also provide extra assistance for passengers. A Disabled Person’s Railcard (www.disabledpersonsrail ard o uk provides a third o train fares for disabled passengers and a friend. Costing £20 for the whole year, the card allows travellers to make big savings on fares. You can also pre-book assistance at rail stations across the UK; many train stations are already accessible and this service provides extra help with boarding and unboarding. Find out more at the Network Rail site, www.networkrail.co.uk.
Hop from the train straight into a taxi. Uber (www.uber.com) recently launched an accessibility scheme, which is set to make private hire cars more accessible. The forward-thinking taxi service allows customers to use an app on their phone to book a taxi, track their driver’s route, and has cashless payments. Partnering technology and accessibility, Uber has advancements for those who are hard of hearing, visually impaired and with mobility problems. For people who are hard of hearing, the app’s vibrations can assist when entering destinations; for visually impaired customers the app has wireless braille compatibility with audio and TalkBack technology; and the service is now trialling ars to find the best vehi le for people with mobility issues. Having the opportunity to explore and feel independent is something everyone strives for. It’s always wise to call ahead to discuss your needs and ensure providers can help you – and don’t be afraid to complain if they can’t. With a high standard of disabilityfriendly public transport, customers have more and more ways to travel. So what are you waiting for? It’s time to get exploring!
BUS AND COACH On the road, buses and coaches are making good progress in terms of access. In 2016, one of the country’s biggest public transport providers First Bus (www.firstgroup.com) introduced their Safe Journey and Better Journey cards to make travelling on buses easier for customers who need extra assistance.
The free cards, available from the First Bus website, allow customers to discreetly communicate with the bus driver about their needs, or to give certain requests including “please be patient – I have difficulty in speaking”, to detailing if they need extra assistance on their journey.
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Fiat has revived the popular Tipo name from its back catalogue for its latest Golf-sized contender. It majors on cabin space and value for money to tackle the class leaders and budget rivals. But how does it cope out on the road? Alisdair Suttie put it through its paces
Cabin space is the Tipo’s big selling point, as it offers more room in the front and back than you’ll find in almost any other car in the small hatch or estate sectors. Finding the ideal driving position is simple thanks to all models coming with a two-way adjustable steering column. You can also move the seat in a wide range, though to get variable lumbar support you need to choose the top spec Lounge, or go for the Comfort Pack option. We’d recommend that you tick that box.
The instruments are clear and easy to read, while the centre console features simple rotary controls for the heating and ventilation that we’re big fans of. It’s a shame the Uconnect infotainment screen isn’t larger than five inches, as it can make it fiddly to select functions while driving. Still, it’s easy to navigate and it’s standard on all but the base versions. In the back, there’s more than enough space for a couple of adults, while the boot is bigger than most in this class. Folding the 60/40 rear seats is simple, but it does leave a small step in the load floor that makes sliding in longer items trickier.
You’re certainly not short on choice for engines in the Tipo. The entry-point 1.4-litre petrol with 95bhp is sluggish, so we’d trade its 49.6mpg for the turbocharged 1.4 T-Jet’s 120bhp, 47.1mpg and stronger performance. It’s smooth, but it’s onl o ered with the si speed manual. To have a petrol motor and auto ’bo , ou need the plodding 1.6 E-Torq model, but the transmission is smooth and 44.8mpg is reasonable. As for the diesels, you can pick from the sweet 1.3-litre with 95bhp, and the 120bhp with its si og anual or auto gearbo es hese are the prime picks and deliver strong economy. A supple low-speed ride impresses, but the Fiat wallows as the pace increases so it’s left behind by most rivals for comfort. The heavy steering can be lightened with the City button to give more assistance when parking.
Equipment You have three trims to choose from with the Tipo, starting with the Easy, which has 15-inch steel wheels, chrome door handles, air conditioning, a DAB digital radio with Bluetooth and USB connections, and cruise control. It also features six airbags as standard. From here, you can move up to the Easy Plus, which gains 16-inch alloy wheels, LED daytime running lights, rear parking sensors and front fog lights to brighten up the exterior. Inside, it has a leather-bound steering wheel and electric rear windows, as well as the five-inch infotainment screen. The top spec choice is the Lounge model with its 17-inch alloy rims and chrome finishes for the windows, front grille, fog lights and gear lever surround. It also has a rear-view camera to make reversing much easier. Other luxuries include climate control, satellite navigation and electric driverâ€™s seat adjustment.
Cabin space is the Tipoâ€™s big selling point, as it ffers re r in t e r nt and a t an u ll nd in al st an t er ar in t e s all at r estate se t rs Summary The Tipo offers small hatch space and practicality at supermini money. However, there are compromises to achieve this, such as low-rent cabin plastics and a mediocre drive.
Find your ideal car Rica, a consumer research charity working with older and disabled people, has a unique online car search with key measurements and fact sheets. Check it out online at www.rica.org.uk/content/ car-search.
Motability Customers The Fiat Tipo Hatchback is available on the Motability Scheme, from zero dvan e a ent o find out ore about the S he e, head to www otabilit o uk, or all
MOTABILITY CELEBRATES 40TH ANNIVERSARY WITH HER MAJESTY THE QUEEN The UK-wide affordable car leasing scheme recently reached a significant milestone – and they celebrated their 40th anniversary in a suitably regal fashion
er Majesty The Queen recently hosted a ceremony at Windsor Castle to celebrate the 40th anniversary of Motability, the charity that has provided a ‘road to freedom’ for millions of disabled people and their families. The Chief Patron of Motability since its inception, Her Majesty The Queen presented five disabled people and their families with the keys to their new vehicles in front of 400 guests. PRIVILEGE Edward Todino, from Surrey, a disability advisor at Kingston University, received the keys of his first ‘drive-from wheelchair’ vehicle on the Motability Scheme – a Mercedes Sprinter which had been converted by TBC Mobility Conversions at their purpose-built factory in Dungannon. David Donnell, managing director of TBC Mobility Conversions (pictured below right with Edward) said he was privileged to attend the event and meet Edward and his family. TBC Mobility Conversions also convert a wide range of wheelchair accessible vehicles including the VW Caddy Maxi Life, Ford Grand Tourneo Connect and over the four and a half millionth vehicle on the Scheme.” Citroen Berlingo. Lord Sterling, the Chairman of Motability, FREEDOM said: “We are honoured and TBC Conversions, coupled delighted that Her Majesty with their wheelchair ABOUT The Queen, our Chief accessible vehicles, also Patron since our MOTABILITY carry out a wide range The Motability Scheme gives inception, was kind of adaptations under disabled people in receipt of enough to host this certain benefits the option to the Motability Scheme, event at Windsor lease a brand-new wheelchair including hand Castle to mark the accessible vehicle for a fivecontrols, swivel seats, 40th anniversary of year term. To find out more hoists and more. David Motability and the role about the Scheme, head to added: “We would it plays in providing www.motability.co.uk, or invite you to contact TBC ‘a road to freedom’ for call 0300 456 4566. or visit our Dungannon disabled people and their premises to discuss how we families, as well as handing
can offer you ‘a road to freedom’ through the Motability Scheme by using TBC’s expertise in converting vehicles to meet your individual requirements.” i
ABOUT TBC CONVERSIONS
TBC Mobility Conversions is a leading vehi le onversion spe ialist, o ering a range of makes and models tailored for di erent needs o find out ore, head to www.tbcconversions.com.
DIARY 8-9 JULY
SUMMER SURF CHALLENGE
Watergate Bay Beach, Newquay www.waveproject.co.uk The Wave Project invites people with disabilities of all ages and abilities to take part in their free surf taster sessions. Join a team of experienced volunteers and surf coaches and discover that having a disability doesn’t mean you can’t take part in water sports. Follow in the footsteps of Bethany Hamilton, who has one arm, or Clay Marzo, who has Asperger syndrome, and hit the waves whilst enjoying beach games and live music. Registration for the weekend is still open.
ARENESS DAY DISABILITY AW ns, Warrington
d Garde Walton Hall an .org.uk awarenessday ty ili ab is www.d nu e an al event, eness Day’s fre Disability Awar 0 exhibitors, llage, brings 25 vi ed nt te a in held , holidays liers, transport equipment supp ongside all e to visitors. Al and much mor orts Zone ere is even a Sp the exhibitors th ment and in rta te , family en ng vi di a ub sc with ’s tastes. please ever yone arts marquee to ent works to to 5pm, the ev Open from 10am bled people sa culture for di do nca a e ot prom work. in their life and
OPMD NETWORK MEETING
Kings Centre, Oxford www.musculardystrophyuk.org Visitors are welcome to attend Muscular Dystrophy UK’s fourth annual meeting. During the day, participants will hear research updates, interact with health professionals and meet others to share experiences. A specialist neuromuscular physiotherapist will also be in attendance. For more information on the event and to register, contact Lloyd Tingley at email@example.com or on 020 7803 4804. 12 AUGUST
ONE BIG DAY
Yorkshire Event Centre, Harrogate www.motability.co.uk An event dedicated to bringing the best in disabled access to you. The free event will showcase a huge range of cars, scooters, over 15 wheelchair accessible vehicles, adaptations and powered wheelchairs, as well as information on the Motability Scheme. A number of experts in the field of Motability will be in attendance, alongside the RAC and Kwik Fit.
TASTER DAY The Snow Cen tre, Hemel Hem pstead www.disabili tysnowsport.o rg.uk WheelPower ha s teamed up w ith Disability Snowsport UK to bring a free snowsport taster day for pe ople interested in getting involved. Open to all abilities, the free taster day will be fully equipped , so that all impairments ar e accounted fo r, ensuring the best experie nce on the snow . For more information or to book your sl ot, email lessons@disabi litysnowsport.o rg.uk.
DISABILITY ADVENTURE WEEKEND
If you have any events coming up in September or October, email us at
firstname.lastname@example.org with the details for inclusion in next issue’s diary.
Pioneer Activity Centre, Shropshire www.acuk.net/pioneer-centre or email@example.com Providing many adventure weekends throughout the summer months, Pioneer Activity Centre gives participants the chance to push themselves in ways they never thought possible. With four adventure activities taking place over the course of each weekend, children and adults can enjoy the great outdoors like never before. From wheelchair abseiling to climbing, you can experience it all for £150 – the cost covers all accommodation, food and activities.
The National Theatre is dedicated to making the very best theatre and sharing it with as many people as possible. Fully accessible foyers and auditoriums • Captioned, Audio-Described and Relaxed performances £16 tickets for disabled visitors and companions (£15 for Travelex productions) • Alternative formats of the NT brochure
For more info visit nationaltheatre.org.uk/access NTGDS_JM_EnableMag_190x137-5_190617.indd 1
Assisted dying vs the disabled community The assisted dying debate has united and divided thousands across the world. Legally, Britain has opposed the idea of assisted dying since the introduction of the Suicide Act in 1961 – but, as MND patient and campaigner Noel Conway brings his argument for assisted dying back to the forefront with a case in the High Court on 17 July, is the UK rethinking the law? Lorne Gillies investigates
ulnerability – one of the biggest issues and talking points in the upcoming assisted dying case appearing in the High Court. People living with a disability have come out to defend both sides of the argument, each with eloquent and fact-based arguments to defend the rights of vulnerable people. Will the introduction of a new law push the most vulnerable in society to seek assisted dying for fear of being a burden? Or rather, does the proposed bill have enough safeguards to ensure outside pressure and coercion is avoided?
PIC: © ROB STOTHARD / DIGNITAS
DIGNITY IN OREGON “We don’t want to introduce a law that would [open assisted dying to] anyone who wasn’t terminally ill, whether they were wishing to take their own life because of a disability or because of their advanced age,”
Campaigner Noel Conway
explains director of campaigns for Dignity in Dying, Tom Davies. “We don’t believe that’s a law that’s right for this country.” Mirroring Oregon’s Death With Dignity Act (DWDA), Noel Conway’s campaign is focused on aiding those with a terminal illness only. Since 1997, the US state has successfully given its residents the choice of assisted dying. In the 20 years of the DWDA law, figures for people seeking assisted dying is not extravagant; only 133 people died with assistance in 2016* at a median age of 73, with many suffering with terminal cancer. Figures and similar evidence is to be brought to judges in the UK case to combat fears of vulnerable people being targets – something that has not been done in previous UK cases to change the law. Tom says: “I think it’s important for people from the disabled community to look at that evidence [behind DWDA] because I can fully understand some of the concerns that have been raised – but they haven’t come true in places where it has been legalised.” PALLIATIVE CARE Despite the apparent success of the Oregon law, it does sit on a double-edged sword. “In truth, pain is the lowest reason given by people using the Oregon assisted suicide law,” argues Juliet Marlow from Not Dead Yet, a group of disabled
campaigners opposed to assisted dying. “It is about loss of autonomy or feelings of being a burden to others.” Extra choice could come at a cost for vulnerable and disabled people, says Juliet. “As we are at the sharp end of austerity measures, we can see this so easily becoming a real danger to [disabled people],” she says. “Saying that, a change in the law would put disability firmly back into the realm of a medical thing that needs fixing rather than something society can alleviate by providing correct support.” Juliet argues that palliative care should not be overlooked. Good palliative care can provide people with a comfortable and ‘good death’, explains Juliet. In the final stages, an individual has the right to refuse treatment and medical professionals are allowed to provide a dose of life-shortening morphine – not a dose, however, to end life. Juliet says: “[Doctors] are going to support [patients], alleviate their suffering at end of life; they’re not just going to be left on trollies to die if they don’t want to fight any more.” MORE CHOICE Although palliative care is a strong option for those with a terminal illness,
* WWW.PUBLIC.HEALTH.OREGON.GOV ** WWW.DIGNITAS.CH
Ultimately it’s down to the individual; it’s about choice and control
campaigners say that having a choice is imperative – and 86% of disabled people support the proposed law. “If you look at the polls, more disabled people are in favour of assisted dying than the general public,” explains Lucy Aliband from Disabled Activists for Dignity in Dying: “I think that’s because they know what its like to be in pain, they know what its like to be suffering and they want to prevent it.” It is important to note that every eight days, a Briton travels to Dignitas in Switzerland to receive end of life medication, sometimes at a cost of £10,000**. “The law in Oregon … has not been extended and has not been abused. If they can do it over there, I don’t know why we can’t do it over here,” says Lucy. Looking at Benelux countries, which can be seen to be blasé with their rules, is not the way forward. However, Juliet explains that in 2015 there was an attempt to alter the Oregon law to make it more lenient,
calling into question if this would also happen within the UK. “Ultimately it’s down to the individual; it’s about choice and control,” explains Lucy. And this is what a change in the law could bring those with a terminal illness – the choice for palliative care, or end of life medication. However, with more choice comes more responsibility, and Juliet concludes that: “Until [disabled people] achieve equality in life, we cannot have equality in death.” Despite strict laws, there is always the chance of finding a loophole in the system that could potentially affect vulnerable people. In an open letter posted on the Dignity in Dying website, Noel Conway wrote: “Eventually, this disease will kill me. I can’t change what’s going to happen; I’m going to die anyway. It’s a question of whether people like me can decide to die on our own terms or not.” Noel’s case will be heard in the High Court
with both sides of the argument brought before a judge; ultimately, it is parliament that has the final decision. As the case moves forward, the conversation becomes more complex as both camps fight their corner on palliative care versus a right to die when faced with a terminal illness. In a movement that could change the course of UK history, we wait with bated breath.
OVER TO YOU We respect the opinions of our readers and appreciate this is a serious topic. What are your thoughts on the proposed assisted dying law – is it a fair proposal or should more be done when it comes to end of life palliative care? Join the conversation on social media: @EnableMagazine on Twitter Or send us and email at: firstname.lastname@example.org
A NEW INNOVATION IN DISABILITY SCOOTER DESIGN The real beauty of the Electrokart Ranger is the ease with which you can take it apart. No other buggy folds away to be as neat and compact as the Ranger. It dismantles simply, in no time at all, to fit neatly into the boot of most saloons and all hatchbacks. This off road mobility scooter is rugged built quality, constructed from high quality steel tubing, phosphated and epoxy coated to give longer life and all weather protection. Adjustable steering column adjusts for comfort and easy, step-on access, with comfortable steel backed, foam filled and weatherproof bucket style seat as standard. With 2 x braked motors for safety.
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MyHailo, £14.95 RRP (www.myhailo.co.uk) MyHailo is a refuelling assistant that offers disabled drivers a dignified and easy way to hail for help at the pump. Simply press your key fob button and a staff member will assist you. See page 68 for a reader discount, and head to the site to check locations and order your fob.
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Nexus, POA (www.nexusdms.co.uk, 01905 774 695) The Nexus Rota-Pro® chair bed helps people get into and out of bed unassisted. The rotational chair transitions the user from lying down into a chair position, and then helps them to stand, all in a smooth, comfortable motion with a single button, improving their mobility whilst preserving their dignity and independence.
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Electrokart, POA (www.electrokart.com) The Electrokart Ranger off-road is a new innovation in disability scooter design. Fully portable for the young and the young at heart. No other buggy folds away to be as neat and compact as the Ranger. Stability guaranteed on the toughest terrain.
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healthandcare.co.uk, £49.99 (www. healthandcare.co.uk, 020 7720 2266) Amplicomms have produced their loudest ever radio-controlled alarm clock. With the alarm reaching 95dB, it’s perfect for people with hearing loss. The clock features a bright, big-number display for those with visual impairment. Its clever safety feature detects other alarm sounds, such as a smoke or burglar alarm, triggering its own louder alert.
Everyone experiences the world in different ways; the colours, smells, sights and sounds we like make us who we are. Our senses are powerful tools, but for autistic people, senses and experiences can become overwhelming. Research has revealed a high public awareness of autism – public understanding, however, is lacking. What more can be done to achieve an autism-friendly world? Enable finds out
n the UK there are around 700,000 people on the autism spectrum, meaning their understanding of the world and people around them can be misplaced. A lifelong developmental disability, autism can at times be hard to understand for those with no knowledge of the condition. PUBLIC UNDERSTANDING A survey conducted by the National Autistic Society (www.autism.org.uk) revealed that, although public awareness of autism was at 99%, understanding of autism was only 16%. Tom Purser, head of campaigns and public engagement at NAS, says: “What that means is that when people are out in public – trying to do the sorts of things that other people can take for granted – they experience a lack of public understanding of autism and of their behaviour.” Making the public more aware of autism is a key way to ensure detailed awareness and understanding of the condition. NAS has been pioneering in advancing public knowledge of autism for over 50 years with the help of autistic people and their families – who at times can still face discrimination. “Our research showed 79% of autistic
people and 70% of families feel socially isolated, and half don’t actually go out because they’re worried about how people will react to their autism,” explains Tom. “Actually, 28% of the autistic people we surveyed said they had been asked to leave a public place because of the behaviour associated with their autism. That sort of gap between public awareness and public understanding isn’t an abstract thing; it has a serious impact on the daily lives of autistic people and their families.” NAS launched their Too Much Information campaign in 2015 to increase public understanding of autism by utilising experiences provided by people with autism and their families. Alongside the campaign, NAS launched their Autism Friendly Award to alleviate discrimination in public places. AUTISM FRIENDLY AWARD Businesses, high street stores, tourist attractions and more must work to five key points to receive the award, which is renewed every year. They’re judged depending on the type of business, as Tom explains: “What a high street hairdresser might do is completely different to what Gatwick Airport might
AN AUTISMFRIENDLY WORLD
PICS: © ZACH HYMAN / SESAME STREET
do. We obviously judge it on a case-bycase basis.” Firstly applicants must increase their understanding of autism; information must also be provided online and/or in store; physical adaptations that can be made, from turning down the level of music to providing clearer signage, must be applied; and they must work to aid public understanding of autism. Customer experience is the final key step to meet when applying for the award. Establishments must show understanding of what their autistic customers and their family members need during a visit. Margaret Devaney’s nine-year-old son Michael is autistic, and she says: “The cinemas and theatres in Glasgow all provide autism-friendly showings, and Glasgow museums have an awareness of autism. When there are excitable times, no one raises an eyebrow.” ENTERTAINMENT The positive movement in comprehending autism can be seen in pop culture too. April of this year saw a new Muppet bounce into Sesame Street. Four-year-old Julia has bright orange hair, a pink dress and holds onto her beloved toy Fluffster – she is also autistic. “We want all parents and children to feel like they can discuss autism openly and compassionately,” says Dr Jeanette Betancourt, senior vice president for US social impact, Sesame Workshop, the nonprofit educational organisation behind Sesame Street. “We’re using all our platforms – not only the show, but also online resources, social media, and community and family engagement – to
build a bridge between the autism and neurotypical communities.” Sesame Street and Autism: See Amazing in All Children (autism. sesamestreet.org) is a US-based initiative, aimed at communities with children aged two to five, dedicated to simplifying everyday activities and encourage connections within communities to better understand autism. Dr Betancourt says: “Julia is unique because she lets us explain what autism is like from a child’s point of view.” And Tom agrees: “Someone like Julia is absolutely great. I know that the puppeteer that actually voices her is the parent of an autistic child themselves, so they bring a bit of personal experience in there.” It is worth noting that the autism spectrum is vast. “I think it is great to see Julia on Sesame Street, but we have to keep in mind autism is so different from one child to the next,” Margaret says. “Some children will relate to her but there will be so many more that are so very different from her. But it’s good to change perceptions, and doing it within a children’s TV programme, I think, is great.” QUIET HOURS More businesses are set to embrace
autism awareness too, through the Autism Hour campaign. The week, commencing 2 October, will see businesses get involved with ‘quiet hours’, with the support of NAS. With Toys R Us, ASDA, Tesco and more involved, it is hoped that Autism Hour will further boost understanding of autism and what simple changes can be made to support autistic people and their families. “What I would say is: understand more about autism, understand more about what [people] might need to have a positive experience,” concludes Tom. The general public may be aware of autism, but lack a real understanding of what it means. But as more initiatives are launched, popular stores and areas discover how to positively adapt, and popular culture further embraces autism, we are on the right track towards boosting public knowledge of a condition that intertwines us all. i
For more information on National Autistic Society’s Autism Hour and how you can get involved, visit www.autism.org.uk
The introduction of Julia, Sesame Street’s first autistic character, was a landmark moment for children’s entertainment. But what else is happening in the industry to make kids’ books, films and TV shows more inclusive? We found out
PICS: © DISNEY PIXAR / SESAME STREET
or children with physical, learning and sensory disabilities, a prominent, relatable character in a book or TV show is a breath of fresh air. With more and more big-name television shows introducing characters with disabilities, young children are being introduced to characters that they can really relate to. The much-loved children’s show Thomas the Tank Engine is set to release a new movie which will introduce a new locomotive with learning disabilities. Characters like this are vital to spread knowledge on all disabilities, for those living with such conditions, their friends and families – and the general population. HIGHLIGHTING These days, there are more and more characters in the world of children’s entertainment who have difficulties that people can relate to, or simply learn from if a child has never experienced disability. Little Parachutes (www.littleparachutes. com) is a website dedicated to highlighting books that depict different situations children might face, including disability. From characters with autism or Down’s syndrome to characters that educate children on how to understand a sibling’s disability, every area is covered. Claire Ward-Dutton from Little Parachutes says: “We have a positive collection of picture books that are either about disability, or feature disabled people. Some books inform and educate non-disabled children about disabilities, others acknowledge the challenges of living with a disability.” Through picture books and interesting storylines, children with physical, learning or sensory disabilities, and those without, will see that everyone is different in their own unique way. “Some books include disabled children casually or incidentally – reinforcing the important message that disabled children are children first, and should not be singled out because of their differences,” explains Claire.
Disabled children are children rst and s uld n t e singled ut e ause t eir differen es
SOMEONE LIKE ME Disability in children’s entertainment
THE BIG SCREEN Depicting disability in books, the small screen and now the big screen, no stone has been left unturned. A family favourite – and a tale of adventure with disability at the forefront – is Finding Nemo. Following a small clownfish born with a deformed fin who ends up in a world of mischief, Nemo is rescued by his father and his worryingly forgetful friend Dory. The film is not only funny and heart warming, but it also cleverly shows how physical disability and mental health conditions can affect people in everyday
life. Other excellent films featuring disability include What’s Eating Gilbert Grape, featuring Leonardo DiCaprio as a young disabled boy. It follows his ordinary life, filled with the exciting adventures he sees from his perspective. Publications, films and TV shows welcoming physical and learning disabilities to storylines is refreshing – for everyone involved. Giving those with a disability characters to relate to, as well as familiarising other children with different behaviours, is guaranteed to encourage a better understanding of disabilities for both adults and children.
We are a group of independent specialist schools providing exceptional residential care and award-winning education for children and young people aged 8 to 19 with a diagnosis of Autistic Spectrum Disorder, severe and complex learning difficulties, global developmental delay and associated challenging behaviour. Offering personalised curriculum programmes which are inclusive of Sensory Integration we provide placements on a day and termly basis and up to 52 weeks a year. We also offer flexible boarding, depending on the individual child’s needs. Our schools are based in Lincolnshire and Surrey. Our services are complemented by Cruckton Hall School, Shropshire, which offers residential education to boys aged 8 to 19 (between 16-19 they go to Harlescott House which is a part of Cruckton registration) with a diagnosis of Autistic Spectrum Disorder, Asperger’s Syndrome and associated communication, social and behavioural difficulties. Placements vary from day care to termly and up to 52 weeks a year. Our support and care is continued into adulthood with several adult homes and supported living homes in Lincolnshire. We have also established adult provisions in South of England as well as a new supported living home in Cambridgeshire.
United Response is an award-winning charity with over 40 years experience supporting people with disabilities and mental health needs. We’ve been cheering at the sidelines as they’ve celebrated passing exams, first jobs and moving into their own homes. We’ve even donned a hat for the odd wedding or two.
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EMPLOYMENT AND EDUCATION
A JOURNEY TO GREATNESS
A job in the media might seem like an impossible dream when you have a disability, but one broadcaster is going the extra mile to ensure that disabled people have an equal chance when it comes to work
PIC: © CHANNEL 4
hen Graeme Whippy MBE was taken on as a disability consultant with Channel 4 last August during the channel’s Year of Disability, the broadcaster’s HR stats showed that just 3% of staff had declared that they had a disability. “The channel felt that they were doing a good job in representing disability on screen, but they felt there was more they should be doing in the workplace,” explains Graeme, a former disability manager at Lloyd’s Banking Group who helped the financial firm to completely overhaul its approach towards disability. An important starting point at Channel 4 was helping the leadership team understand that they probably had more disabled staff than they realised, and improving the 3% was down to culture rather than recruitment. Graeme therefore worked with HR and others on a campaign to encourage staff to share their disability status. A cornerstone of the campaign was clarity of purpose and changing the language used from one of ‘disclosure’ to ‘sharing’. POSITIVE MESSAGE “We had to reinforce the positive message around why we wanted people to share, what we were going to do with the information, what we weren’t going to do with the information, confidentiality, why it was important to us,” Graeme explains. They also issued videos with members of staff and managers talking about disability, and another explaining what the channel meant by ‘disability’ and reinforcing the confidentiality message. The result? The 3% rose to 11.5%. This is all part of Channel 4’s mission to become one of the country’s best employers for disabled people by 2020, and Graeme’s three-pronged attack to help them get there. He’s tackling the
culture around disability at the channel, capability and engagement of managers and staff, and infrastructure – policies, processes, and so on. A member of the Business Disability Forum, and with Graeme guiding the channel through the forum’s Disability Standard programme of best practice, Channel 4 recognise the real value of embracing disabled talent. “TV broadcast media is a very competitive industry and everyone’s after the best talent out there,” Graeme points out. “If you want the best talent, you’ve got to take it from the biggest possible pool. You can’t restrict yourself by turning away one in five people because they have a disability. “We also know that diversity drives creativity – different people have different life experiences and perspectives, and this results in different thinking and different stories. We need diverse people to help us create stand-out TV, and that naturally includes disabled people.” STREAMLINED Graeme has launched the Disability Hub on the staff intranet, packed with
information and details on different disabilities and support, which can be accessed by colleagues and managers. He’s also shaken up the channel’s workplace adjustment process, introducing a more streamlined process where staff don’t need medical evidence of a disability – they operate on trust. They’ve also run recruitment programmes targeting disabled people, through work experience, apprenticeships and their production training scheme. “It’s about investment in emerging talent and helping them up the rungs of the ladder so we create a pipeline of future leaders,” Graeme says. “It starts with needing the best person for the job. We don’t care about the colour of their skin, whether they went to university or which one, their socio-economic group – we simply want the best person and we’ll help them thrive in their career.” i
FIND OUT MORE
CHANNEL 4 JOBS jobs.channel4.com
BUSINESS DISABILITY FORUM www.businessdisabilityforum.org.uk
EMPLOYMENT AND EDUCATION
CAN DO ATTITUDE
Gain confidence through helping others
You’ve been volunteering for three months now – how did you first join Leonard Cheshire Disability’s Can Do programme? I got involved through a programme called SCVS (Swansea Council for Voluntary Service), which is another volunteering service. I do a lot with Can Do Swansea – I do charity work and I’ve done a promotional event with the National Waterfront Museum through the King Arthur launch [of interactive book, King Arthur and Other Tales] – I’ve done quite a few things, the list could go on.
What has been the best part about volunteering so far? The promotional event at The National Waterfront Museum – I got to meet Michael Sheen. It was the best thing ever, he was super. I had so many of my friends messaging me because they were so jealous.
Volunteering can be a great way to progress yourself – how do you feel you have grown since getting involved with Can Do? I feel a lot more confident within myself. It has taught me to believe in myself
PIC: © ADRIAN WHITE
Volunteering can be one of the most enriching experiences out there, helping others and developing a new outlook – and Leonard Cheshire Disability’s Can Do programme helps to do just this for participants. It provides opportunities to get involved with the community, gain confidence, and, in Hayley’s case, meet famous faces. Hayley, who has cerebral palsy, told us how Can Do has widened her opportunities – and even had her rubbing shoulders with Hollywood star, Michael Sheen because I always put myself down. Joining the group has made me realise I need to push myself and not stop myself from doing things. It’s been a really good experience so far and I can’t wait to continue.
Do you have any advice for someone thinking about getting involved in a volunteering project? Go for it! Obviously, don’t think about it too much. Speak with a member of staff for a one-to-one meeting before joining a group. And don’t put it off; I put it off for far too long and I shouldn’t have. I regret putting it off for so long but I don’t regret joining – it’s been absolutely amazing. It’s helped me to learn to travel to new places by myself. I live in Swansea and I used to only stick to being Swanseabased. In the last month or so I’ve been learning that I’m actually able to – not go outside of Swansea – but into Swansea by myself whereas a year ago I wouldn’t be able to think about doing that. It’s been a great support and [Can Do programme co-ordinator] Charlie has been amazing, my whole group in Swansea is just amazing and I can’t wait to continue my journey with them.
I regret putting it ff r s l ng but I don’t regret ining it s een a s lutel amazing i
FIND OUT MORE
Leonard Cheshire Disability’s Can Do programme helps 10 to 35-year-olds get into volunteering. Expenses are covered, training is included and support can be provided. It’s open to people with a long-term health condition or disability, and available in a variety of locations UK-wide, from Edinburgh to Southendon-Sea. Find out more about Can Do at le nard es ire rg and .
We exist to provide a lifetime of support to soldiers, veterans and their immediate families. We support up to 100 front line charities and specialist organisations – such as SSAFA, Combat Stress, Royal Star & Garter and the NSPCC – to deliver help on our behalf. We also make direct grants to some 5,000 individuals, ranging in age from 6 months to 105 years old. Through our network of support, our work touches the lives of around 80,000 people worldwide, every year. Donate or get involved in fundraising at www.soldierscharity.org facebook.com/soldierscharity
@soldierscharity ABF The Soldiers’ Charity is a registered charity in England and Wales (1146420) and Scotland (039189). Registered Office: Mountbarrow House, 12 Elizabeth Street, London SW1W 9RB, Tel: 020 7901 8900, Email: email@example.com
Gary Jamieson, former Scots Guardsmen, injured in Afghanistan in 2010, Charity Beneficiary. © Malcolm Cochrane
CARERS AT WORK
THE WORKCARE BALANCE One in nine UK workers have caring responsibilities – but what can, and should, employers be doing to make sure they’re fully supported to carry out both their role as a member of staff during the day and a carer after hours? We found out
fter a hard day of meetings, number crunching and deadlines in the office, there’s nothing more satisfying than going home, settling down in front of the TV with a cuppa and switching off. That’s the reality for the majority of the working population. But for one in nine British employees, there’s often more work to be done after clocking off for the day. Carers are very much present in the nation’s workplaces – people who have major responsibilities beyond their nine to five. With an ageing population, it’s becoming more and more likely that any one of us could find ourselves in a caring role – and juggling the two can bring a lot of pressure. VULNERABLE “People can feel really vulnerable, especially if they’re having to juggle a lot,” explains Katherine Wilson, strategic manager for Employers for Carers, a specialist forum made up of UK businesses committed to supporting carers in the workplace set up by Carers UK. “They might feel tired and, understandably, stressed. Work doesn’t get any easier when you’re caring – the deadlines don’t stop. It can be really difficult to find that time to raise that in the workplace, and feel comfortable doing it – particularly if you’re worried about your caring situation.” If you do have caring responsibilities alongside your job, what rights do
you have, and what support are you entitled to? Employers are, fortunately, wising up to the benefits of supporting carers in the workplace – Employers for Carers, for instance, offers advice and support to organisations to help them become more carer-friendly and inclusive. They can give training and advice to help companies improve their practices to ensure that carers can stay in work for as long as possible. Katherine says it all starts with the four Ps – policy, practice, promotion and peer support. “On the policy side, they might be a small business, and might not have formal HR policies, but they can still have statements and supporting guidance and information for carers,” Katherine says. “The second P is practice – what sort of practical support is available in the workplace? It might be simple, practical adjustments – making it OK to take phone calls in work, maybe a car parking space close to the entrance. Peer support is the third thing – making it OK to talk to people about your caring responsibilities. Some organisations
have staff networks. And then there’s promotion – it’s no good having great policies on paper if no one knows about them. A key thing is to keep communicating.” FLEXIBLE Alongside a supportive workplace, a key issue for carers is the right to request flexible working hours. After six months’ service, you can request flexibility in your working hours – earlier or later starts for instance, or the ability to bank hours so you can take time off to accompany the person you care for to appointments. “It’s a right to request, not a right to automatically get flexible working,” Katherine points out. “But top of the list of what our colleagues say to us, within our network and within Carers UK, is that flexibility really supports them. What’s important is the fact that you’ve got this statutory right to request, which raises the bar – it makes it more acceptable for people to raise the issue, whether it’s an informal
EMPLOYMENT AND EDUCATION
1 in 8
adults identify as carers
rise in the number of carers since the 2001 Census
1.4 million carers provide over 50 hours of unpaid care each week
1 in 9
employees have a caring role
request or a more formal one.” A supportive workplace which takes into consideration the different challenges carers face is a better workplace – as Olga Budimir knows well. Olga cares for her mother, who is in her 90s, at a distance. She became a carer two years ago when her father was diagnosed with lymphoma, and took over care for her mum when her dad passed away. Her employer at the time had very little understanding of carers’ rights. “After six months of caring, my contract with the company I was working with came to an end,” she says. “I asked if I could go part-time and they didn’t want to discuss it. They stopped communicating with me. My contract came to an end, and I gave up work completely.” WORSE OFF For 18 months, Olga was out of work and had to live off her savings. She eventually went back to work, on a
part-time basis, and her new employer has a totally different attitude towards her responsibilities – but, like many carers, she is worse off financially. “Because I now work part-time, I earn a fraction of what I used to earn,” she says. “I’m 58. In the last few years before I retire, I should be at the height of my earning potential to prepare for my retirement and I’m not. I’m nowhere near that.” Many carers find themselves in a similar position – 2 million carers have given up work at some point to care, and 3 million have reduced their working hours. This isn’t just a negative for the employee – it has an impact on the business they work for. “The average cost of replacing someone if they leave work to care is 12 months or 18 months of their salary, at least,” Katherine says. “Making a few adjustments to be able to keep someone, even if you have to adjust work within the team or take on someone temporarily to do a bit of extra work, rather than lose the person who’s got the skills, knowledge and expertise – it’s a no-brainer.”
carers have given up work at some point to care for a loved one
3 million carers have reduced their working hours Providing as little as
of care per week alongside work has shown to be the ‘tipping point’ for some carers
FIND OUT MORE
www.carersuk.org 0808 808 7777
EMPLOYMENT AND EDUCATION
Kate Powell works as the editor of the Down’s Syndrome Association’s Down2Earth magazine – which is entirely written by people with Down’s syndrome. Kate, who has the condition herself, told us all about life as the editor of a successful magazine and what the future holds for her
AT WORK WITH KATE POWELL
own2Earth is a biannual magazine for members of the Down’s Syndrome Association, filled with features, letters and photographs from people with Down’s syndrome. The magazine is part of the Having A Voice project, which enables people with the condition to have their say, to talk about things that matter to them and, most importantly, to be listened to. Kate got the job as magazine editor through her love of interesting features. HAVING A VOICE “I like to see really good stories from people with Down’s syndrome, it helps me a lot,” explains Kate. Tales from bloggers, guest writers and articles from Kate make up the Down2Earth magazine, which is published in print and online. Kate is no stranger to the busy world of publishing, having worked at the DSA for 19 years. Of her role, Kate says: “I started
as the editor after being in the original Down2Earth group.” Her job has taken her to wonderful places, both at home and abroad. FURTHER AFIELD Recently, Kate travelled to Geneva in Switzerland to participate in the United I would like it if Nation’s conference people with Down’s during the annual World syndrome living in Down’s Syndrome other countries could Day (21 March). This read the magazine in experience provided different languages the opportunity for an interesting read on the THE FUTURE Down2Earth blog, where Will Down2Earth be taken Kate documented all the further afield? Kate reveals activities and speeches that took that this is one of her biggest place during the event, including guest ambitions. “I would like it if the magazine speaker Sheri Brynard from South Africa. was published nationally,” she says. “I Sheri is a motivational speaker, who would also like it if people with Down’s also happens to have Down’s syndrome living in other countries could syndrome. read it in different languages.” Getting to spread the word and Kate says that working as the editor hear experiences from individuals of a magazine is a wonderful job. Not and their families is certainly one only does she meet new people and of the perks of being a magazine travel the world, but her voice can be editor. Through her opportunities heard alongside fellow writers and to travel, Kate looks forward to readers. Kate is testament to how hard more people becoming involved work and determination can take you with Down2Earth in the future. to exciting places – all thanks to her She says: “I want to get more ‘Having a Voice’. people writing in, to share it with other people and get as For more information on Kate’s work many people as possible into the and Down2Earth magazine visit the DSA Down2Earth magazine.” website, www.downs-syndrome.org.uk
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o one likes to miss out on the action. Whether that’s the big football match at the weekend, a must-attend party or that totally addictive TV show that everyone’s talking about – there’s nothing worse than being the only one who’s not involved. But there’s one thing you can have control over in this arena – making sure you’re never the last one to read the latest issue of Enable. By becoming an Enable subscriber, you’ll get every issue of the magazine delivered direct to your door every other month – that means no queuing up and absolutely no missing out at your local distribution point!
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Despite the current media ‘ideal’ on what we should aspire to be like, one woman has worked tirelessly to change these perceptions. Louise Dyson MBE is the founder and director of VisABLE People, an organisation working to bring disabled people to the forefront of media attention – not because they have a disability, but rather because they fit the spec in their own right
She’s got the look
How did VisABLE come about? I used to own a modelling agency, and companies used to use non-disabled models to model mobility products. It never occurred to anybody that there was anything wrong with that until some of their customers said: “Why don’t you use genuinely disabled people?” We organised a competition 23 years ago and we had a phenomenal response – over 600 entries. Some of the people, including the person who won, still work through VisABLE all these years later.
Has the media’s perception of disabled people changed? Phenomenal change, but it took a very long time. Most people’s preconceptions of modelling are of physical perfection and of disability equalling physical imperfection. Although the advertising industry was desperately slow in embracing the idea by giving us work, the arts did. When it came to television, drama and comedy and theatre, I found we were welcomed with open arms, which was brilliant. They actually bent over backwards to ensure they were inclusive
in their casting in a way the advertising industry hadn’t.
How do you think the media can further adapt? With VisABLE I have a very clear objective, which is to change the public mind set towards disability by changing the media mind set towards disability. Once you’ve got people in everyday, unremarkable situations seen with the help of the media, it means that people will regard disability as the everyday, ordinary thing that it is.
Once you’ve got people in everyday, unremarkable situations seen with the help of the media it means that people will regard disability as the everyday, ordinary thing that it is for my work. That was astonishing – a massive shock and really lovely.
For those who are interested in getting involved in the media, what advice do you have for them? A lot of people are under the illusion that you have to be young and beautiful and very skinny to get anywhere in the media and it’s simply not true. We have a shortage of older people, we really do, and a READ MORE shortage of children too. from our interview Don’t make assumptions, with Louise at first of all, about your own www.enable suitability because there magazine.co.uk is work for people across a whole range of demographics.
What has been your most memorable moment with VisABLE? Truly, placing Cerrie Burnell [former CBeebies presenter] has got to be one of the big things, because of the impact her role has had on the attitudes of children and families. It depends on what you class as memorable really – about three years ago, a number of my lovely artists got together, completely unbeknown to me, and I was whisked off to Buckingham Palace to receive an MBE
FIND OUT MORE
For more information on VisABLE, or to find out how to get representation, visit the website, www.visablepeople.com
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