A luxurious hamper ﬁlled with sweet treats
The 17-year-old silver medallist recalls her journey to Tokyo 2020
The UK’s leading disability and lifestyle magazine
November / December 2 2
Minister for Disabled People Chloe Smith MP reveals her priorities
Disability in the spotlight Rose Ayling-Ellis on being Strictly’s ﬁrst ever deaf contestant and increasing representation of the deaf community on screen
Get ready to enjoy another exciting issue of Enable for November/December
The UK’s leading disability and lifestyle magazine
EDITOR’S PICKS... 30 TRUST IN CARE Services are reopening, but the care sector is still trying to recover from the reputation left by the pandemic. We speak to one organisation about this perception and the importance of care homes providing respite. 46 TIME TO TALK MONEY As Christmas approaches and energy prices rise, it’s time to start a conversation about money, especially as Talk Money Week begins on 8 November. 78 EMBRACING MENTORING A new perspective, different ideas and the chance to share your ideas: we learn about the beneﬁts that reverse mentoring can bring to an organisation.
inter is ofﬁcially here and so is the last issue of nable for 1. othing mar s the lead up to the festive season li e watching the glitterball over the trictly danceﬂoor. n page 1 we re chatting to ast nders actress ose yling llis about being trictly ome ancing s ﬁrst ever deaf contestant. hile winter brings excitement, it will also mean a strain on care providers throughout the country. e re highlighting the importance of unpaid carers rights on page 1 discussing the need for social care funding on page 1 and learning about the ways care homes can provide short term respite on page 1. The last 1 months have brought many changes, but for the research community this hasn t all been negative. n page , researchers from the ichael . ox oundation reveal the details of a study that could change the future of ar inson s research and inﬂuence the wider industry. dvocates for disabled people are more important than ever, with an increase in complex needs and a lac of support during the pandemic. n page we hear from the s ﬁrst ever isability mbassador for the hospitality sector before tal ing to the new inister for isabled eople on page 9. xpect all of this and much more in the latest issue of nable. e ll see you in , but until then, want to wish you and your loved ones a erry hristmas and a happy new year. f you have any ideas for future issues of nable, get in touch using the details in the box. ll the best,
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Behind the scenes SWIMMING IN SCOTTISH WATERS The weather is getting colder but that hasn’t stopped director Marian from picking up a new hobby. Armed with a wetsuit and a flask of hot tea, Marian has taken up wild swimming. The practice is thought to increase resilience and se onﬁden e MARKING SPOOKY SEASON As autumn kicked off, the team at Enable HQ held their very own pumpkin carving competition to mark Halloween. Enable editor Emma came in second place with her night sky carving.
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COVER IMAGE: ©BBC ELLIE CHALLIS PHOTO: IMAGECOMMS_PARALYMPICSGB
What’s inside November / December 2021
13 THE RIGHT TO SUPPORT The importance of Carers Rights Day and help for unpaid carers
21 ELLIE CHALLIS The 17-year-old discusses the journey to Tokyo 2020
34 SUPPORT AFTER ACQUIRED DISABILITY Finding help and accepting your new daily life
29 FIFTEEN TO ONE Tim Rushby-Smith on the importance of global disabilityawareness
39 COMBATTING LONELINESS Tackle isolation with Mencap
18 FIXING SOCIAL CARE Speaking out for greater social care funding 31 TRUST IN CARE After a turbulent 18 months, it’s time to trust care homes
INTERVIEW 10 DISABILITY IN THE SPOTLIGHT Rose Ayling-Ellis on becoming trictly s ﬁrst deaf contestant
HEALTH 16 CELEBRATING DIABETES TECH The innovations transforming the lives of people with the condition 23 A SYSTEM UNDER PRESSURE Calling for shorter wait times and more communication from mental health services
37 HOSPITALITY AMBASSADOR The s ﬁrst disability ambassador for the hospitality industry shares her plans 69 MINISTER FOR DISABLED PEOPLE Chloe Smith MP on the need to liaise with the community 76 THE POWER OF EMPLOYER SUPPORT Jo Craig of Audit Scotland discusses achieving work-life balance with a life-long illness
40 AUTISM AND THE FESTIVE SEASON Preparing for Christmas with autistic children 43 CREATING OPPORTUNITIES FOR OTHERS The power of volunteering during the festive season 44 PAINT THE TOWN PURPLE s urple Tuesday approaches, ﬁnd out why the day is so important 49 BUILDING RELATIONSHIPS Embracing the post-pandemic dating landscape to form new connections 52 PLEDGING AGAINST HATE CRIME The new campaign tackling online abuse
55 PRODUCT ROUND UP Our pick of products for Winter 62 WINTER SAFETY Helpful numbers and advice as the nights get darker 64 THE FIGHT FOR LGBTQ+ SPACES The organisation calling for accessible and accepting venues 67 NOTHING ABOUT US WITHOUT US This year’s International Day of People with Disabilities 81 REPRESENTATION ON STAGE The play changing perceptions of Down’s syndrome and intimacy 82 THE GIFT OF ART Find the perfect Christmas gifts with Scope’s new shop
SPOTLIGHT 26 CHANGING THE FACE OF RESEARCH A ground-breaking study that could transform Parkinson’s treatments
FINANCE 46 TIME TO TALK MONEY et your ﬁnances in order for winter
A LUXURIOUS HAMPER ON PAGE 50
MOTORING 58 REVIEW Alisdair Suttie discusses the beneﬁts of the onda e 61 INDEPENDENCE ON THE ROAD Open doors to new opportunities by getting your license
EMPLOYMENT 72 SAVING LIVES AT WORK Could saving lives be the career path for you? 74 VALUING YOUR NEEDS IN THE WORKPLACE Thrive at work with the ntellectual roperty fﬁce 78 EMBRACING MENTORING Turning traditional mentoring upside down
EDUCATION 70 PREPARING FOR HIGHER EDUCATION Help choosing the right path for your future
Criticism continues for rebranded Elephant Man show A SHOW CRITICISED for trivialising disability by dissecting a model of Joseph erric , dubbed the lephant an, continues to come under ﬁre even after rebranding. The event was due to be held in Newcastle, marketed as a dinner and dissection night out, and used images associated with circuses to advertise. Due to the efforts of disability campaigners and a complaint to the Advertising Standards Agency from Newcastle Council, the event’s creators, ITAE Productions, made the decision to rebrand the show. ow, the show is under ﬁre again for glorifying violence against women after calling Jack the Ripper ‘a Victorian great’ in the rebrand. The production company has said that it will not make any further changes before the event begins in 2022.
Concern for winter care levels THE CARE QUALITY COMMISSION, the health and social care watchdog, has warned that the care system will face a ‘tsunami of unmet needs’ this winter. It comes as health and social care workers speak of experiencing tougher work conditions due to an understaffed workforce and the increased complexity of patients’ needs after the pandemic. In the watchdog’s State of Care report, published in October, recruitment and staff retention were highlighted as areas of concern. The warning came with a call for immediate funding to tackle these issues, with some funding now announced by the UK Government for local authorties in England.
says #ItsOKtoAsk TEAMING UP WITH major celebrities including footballer and social campaigner Marcus Rashford, Google is celebrating the power of curiosity with a new ad campaign. #ItsOKtoAsk invites viewers to dig deeper into the world around them while being more observant of those around us and showing interest in cultures different from your own. The campaign highlights people asking questions about
different circumstances, encouraging them that it’s ok not to know, to be curious, or to be clueless, to wonder what something is. The message left with viewers is that it’s ok to as , because it isn t curiosity or uestions that deﬁne us, but what we do with the answers and what we learn from them. Use #ItsOKtoAsk to answer common questions about different disabilities on social media.
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News Assisted dying bill passes first hurdle A LAW TO ALLOW assisted dying in the UK has passed its first hurdle in parliament after families around the UK wrote to members of the House of Lords recounting their personal experiences. The highlydisputed bill was debated in the House of Lords at the end of October when the second reading of the Assisted Dying Bill was unopposed. The bill was tabled by Baroness Meacher, a cross-bench peer, and proposes that terminally ill patients with full mental capacity and a life expectancy of no more than six months would be eligible to apply for an assisted death. This was the bill’s second reading in the House of Lords, with the first happening in May 2021. It is common for private members’ bills in the Lords to be given a second reading, but this doesn’t make it a law yet: there are still many stages to get through before this could happen. Next, the bill will be scrutinised by a committee.
BOOST TO ADULT SOCIAL CARE WORKFORCE 8
Paralympian completes handcycle journey around UK BRITISH WHEELCHAIR ATHLETE Mel Nicholls has completed a journey around the UK by handcycle. Totalling 4,800 miles, Mel started the challenge in her home town of Tewkesbury in Gloucestershire on 7 August, ending in the same location on 22 October. The 75-day journey took Mel from the town to Wales before heading north around Scotland, around the east and south coast and then back to Gloucestershire. The journey comes just a year after the Paralympian had to have a five-kilogram ovarian tumour removed. Through the cycle Mel has been raising money for two charities: Ovarian Cancer Action and The Eve Appeal.
THE UK GOVERNMENT has announced a multi-million-pound fund to boost the adult social care workforce. The workforce will benefit from £162.5 million of new funding to aid retention and recruitment. The funding will go to care homes and home care providers throughout England in an effort to bolster the workforce.
Local authorities will soon be able to access the fund based on their need, helping to boost the number of people working in adult social care, as well as supporting those already working in the sector to continue to deliver care. The ring-fenced funding will be available until the end of March 2022.
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We’ve got dedicated parking you can reserve fo f r your visit. Just let us know and we’ll save you a space right outside. The Motability Scheme is administered by Motability Operations Limited (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London SE1 9HB. The facilities offered are for the hire (bailment) of goods. You will not own the vehicle. Agreement subject to acceptance and age restrictions may apply. The agreement can be terminated early with the consent of Motability Operations Limited and administrative charges may be applicable. Mileage allowance of 20,000 miles per annum over three- or five-year terms. To qualify you must be in receipt of one of, the Higher Rate Mobility Component of Disability Living Allowance (DLA), the Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP), which will be taken in lieu of the four weekly hire rental. Attendance Allowance is a nonqualifying allowance. Terms and conditions apply and are available on request. Lookers is a trading name of Lookers Motor Group Limited, 3 Etchells Road, West Timperley, Altrincham, WA14 5XS, registered in England & Wales Reg. No. 143470. Authorised and regulated by the Financial Conduct Authority. We are a credit broker, not a lender and can introduce you to a number of lenders. Introducing you to a enablemagazine.co.uk number of lenders means we receive a commission. Lenders pay commission at different rates either as a fixed fee or as a fixed percentage of the amount you borrow. The commission that we receive does not affect the amount that you pay to the lender under the credit agreement.
DISABILITY in the
Interview Amazing outfits, an iconic disco ball and impressive dance moves all come to mind when you think of Strictly Come Dancing, but this year, Rose Ayling-Ellis is putting disability in the spotlight as the show’s first ever deaf contestant
his winter, Rose AylingEllis is making the switch from soaps to Strictly as the show s ﬁrst ever deaf contestant. The ast nders actress is captivating the nation, already garnering praise for her newfound dancing s ills.
hen ose was ﬁrst approached to take part in Strictly Come Dancing, she new she couldn t turn down the opportunity. “I thought it was a fantastic chance to spread more deaf awareness and also for people who watch the programme who are deaf to say ama ing, there s someone deaf on the show,” recalls Rose. “I think it’s such a great show: you learn to dance which is a completely new s ill. ho would say no to trictly?” From the beginning of this process, the team behind trictly were een to hear about Rose’s requirements. had lots of conversations with trictly, they really wanted to do it right and they didn t want to ma e mista es. They as ed me uestions about what needed, what want,” reveals ose. This included everyone on the show being given deaf awareness training before she started, giving them basic nowledge and teaching them some British Sign Language (BSL). Before the show even started to air, ose was creating change: along with training, ose as ed that live subtitles were improved and that these, along with audio description and a interpreter, were added to the show as soon as it was uploaded to i layer. reviously, these accessibility tools too an additional 4 hours to become available. They listen and that s very much important,” stresses ose. They didn t ma e me compromise, they said o we will do this, we need to improve and do better than we did before. They have given me what want, but shouldn t
even phrase it li e that because it s what need.” Rose also has three BSL interpreters on the show which are shown to the audience in the ballroom and at home. as ed for three interpreters for live T one for the udges, one for up front and one for bac stage, because it would look a bit funny if one interpreter ran after me while was on the danceﬂoor,” laughs ose. have them on the screen but not all of the time because it’s not about the interpreter it s about a deaf person dancing.”
did the training with everyone else but the difference started when we started training, you ust learn and ﬁnd ways that wor for both of you.” The pair have wor ed together to ﬁnd solutions and the result is wee after wee of praise from the trictly udges and the public. t ma es it rewarding more than anything else, the process is not frustrating, the approach is ust different,” emphasises io. n the danceﬂoor it loo s li e we re both doing a great ob, me as a teacher and her as a student.”
Gio and Rose
CHALLENGE ith no experience, ose started rehearsals not nowing how she would eep to the music when she couldn t hear it for herself. very wee we always have a new challenge so the timing, the beat, it’s all different,” reveals ose. ust ta e it one wee at a time, have to be in the moment and focussed on surviving the live show each aturday.” Through trial and error, ose has found that counting the beat is one of the best ways to follow the choreography. Teaching deﬁnitely isn t new to Rose’s professional partner, iovanni ernice, but the chance to dance with ose is broadening his hori ons. ve never done anything li e this before so it s ust ma ing sure ose feels comfortable with everything we do,” explains io.
For Rose, the highlight of each week on trictly is getting to perform live and having her hard wor pay off, but she is still learning. ll of the dances are so different from each other so you’re really starting from scratch each week, so some of the time feel li e move with the body more, some of it I count, some of it is sort of using muscle memory so it s ust a combination, it’s about working that out and experimenting.” s the show progresses and ose s input continues to have a positive impact, she hopes that it stretches further than trictly or even the . wanted to show people the way live T wor s for the deaf community because it was never accessible for me in the ﬁrst place,” reveals ose. opefully live T becomes more accessible because what we re doing shows that you can do it, with any ind of T you can do it, not ust live, and you shouldn t ust do the bare minimum. If you say you want it to be en oyable for everyone, then you should really mean everybody.” FOR MORE INFORMATION
Watch Rose and Gio on the dancefloor on Saturdays from 7pm on BBC One.
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Julia and Lawrence
the right to support In the wake of the coronavirus pandemic, unpaid carers have been left overworked and often undervalued as they continue to take on additional responsibilities to care for their loved ones
uring the pandemic, four out of ﬁve carers have ta en on additional hours of care due to reduced access to support, and per cent of carers have not had any brea s. any have said that their own physical health has declined because of their caring role during the pandemic.
DIFFICULT The pandemic has been a difﬁcult and transformative time for unpaid carers and those they care for,” reveals mily ol hausen , director of policy and public affairs at arers . The pressures of the pandemic have left many carers exhausted and worried about how they will be able to continue to care.”
ust one of these carers is ulia who cares for her husband awrence. n 1 , awrence was diagnosed with rogressive upranuclear alsy ), an incurable, progressive brain disease affecting executive function, speech and language, swallowing, vision and movement. y husband needs constant support to eep him physically safe, well, and emotionally secure,” explains ulia. used to be a sandwich carer which means cared for my son who has the respiratory condition cystic ﬁbrosis and is now an adult, and both my parents. ven before the pandemic, my husband and lived in our own little bubble 19 restrictions became ust an extension of the way we live our lives due to .”
hile life opens up for much of the population, awrence s condition is deteriorating. am ﬁnding it increasingly difﬁcult to care for him on my own,” admits ulia. recognise that our caring situation is unsustainable as have not had a brea from caring in over two years. t s really affecting my mental health.”
COST The need for greater support for unpaid carers isn t a new concept it is something charities li e arers have been campaigning for since their inception, but in situations li e ulia s it is now essential to survival. or years, carers have been propping up a chronically underfunded care system at a huge cost to their own
personal health, ﬁnances and ability to stay in wor ,” stresses mily. ithout additional brea s, funding and investment to return to support services, the stress and challenges during this time could lead to carers reaching a tipping point.” arers desperately need support in order to regain their uality of life and continue in these roles. e welcome the government s promise to loo at the information, advice and respite needed by carers, but this must come with signiﬁcant investment in carers brea s which are desperately needed,” continues mily. Too often there is a ﬁnancial penalty for choosing to care for a loved one.” ith better support, ulia would also li e to see more ac nowledgement of the role carers play in providing uality health and social care in the , and wants to see arer s llowance paid at a similar rate to other beneﬁts. d li e to see that the guidelines for good practice that already exist to support unpaid carers are properly implemented notably identifying carers in the ﬁrst place, ma ing sure that all ractices are carer friendly, that carers physical and mental health is safeguarded via an annual carers health chec , and that carers get access
to regular, timely respite, secure in the nowledge that their loved ones are well cared for in their absence,” emphasises ulia.
ACKNOWLEDGEMENT The signiﬁcant cost to the health, ﬁnances and wor of unpaid carers over the last 1 months has to be ac nowledged as a ﬁrst step to better support. Too often, caring has effects on the health of people ta ing on the role, leading to stress and exhaustion and needing additional support themselves. ithout good health, unpaid carers cannot continue to provide proper support to others. npaid carers are tired, exhausted and need more support. e provide billions of pounds a year in unpaid care shoring up the and social care sector but our own needs are regularly ignored,” admits ulia. ll too often caring has severe health effects on unpaid carers who suffer stress and exhaustion, and it has a severe strain on their relationship with those they care for. arers need brea s and support for their own wellbeing to prevent us from burning out and to recuperate after an incredibly tough period during the pandemic.”
vents li e arers ights ay, ta ing place on 5 ovember, can ensure carers get the information necessary to see whatever support is available to them. aring without the right information and support can be tough. arers need to now their rights wherever they are in their caring ourney whether they are in the wor place or in a healthcare setting, and when interacting with professionals or at home,” emphasises mily. e want to empower carers with information and support so they can feel conﬁdent as ing for the support they need. e want carers to now how to challenge things when their rights are being ignored. e also want to bring organisations across the together to help carers in their local community now their rights and ﬁnd out how to get the help and support they are entitled to.” ays li e this give ulia hope, allowing carers to share their stories, spea out about the reality of their lives and be listened to. ot enough carers now about their rights and legal entitlements. want other carers to now what help is available to them,” explains ulia. he would also encourage other carers to see support from their , social services, friends and family. espite all the daily pressures of unpaid caring, try to carve out a little time each day for yourself, eep up with friends, ﬁnd the oy in each day listen to the birds, observe the changing seasons, really en oy that cup of coffee, go for that wal or run,” recommends ulia. t s not a luxury it s an essential part of ta ing care of your mental and physical well being to sustain you in your unpaid caring role.”
FOR MORE INFORMATION Find out more about Carers Rights Day and access advice at www.carersuk.org, by emailing firstname.lastname@example.org or calling the helpline on 0808 808 7777
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DIABETES: CELEBRATING TECHNOLOGY
Technology has a huge role to play in supporting people living with diabetes, helping them to manage the condition on a daily basis. Now, advancements in this tech are helping to remove inconvenience and stress
very day, different forms of technology help people living with diabetes to manage their condition. rom ﬂash glucose monitoring to utilising apps, this tech can provide a lifeline of support.
apps grew by 400 per cent. The NHSX Digital Technology Assessment Criteria has now been introduced to ensure clinicians are able to recommend apps that are safe to use.
Alongside existing tech, there are exciting advancements in the ﬁeld. “As technology continues to evolve, we’re now at a point where wearable blood sugar sensors can tell people what direction their sugar levels are travelling in and where they have been for the previous eight hours,” reveals Liz. “During the COVID-19 pandemic we’ve also seen some really interesting innovations being trialled locally and, in some cases, rolled out more widely across the country. “In England, for example, we’ve seen NHSX support the testing of the Healthy.io smartphone urinalysis technology, which uses an at-home urine testing kit and a smartphone app to turn people’s phones into an at-home idney function test.” With research and advancements ongoing, people living with diabetes will continue to beneﬁt, easing the pressure of managing the condition in the future.
i erraudin is a senior policy ofﬁcer at Diabetes UK (www.diabetes.org.uk) and has seen the impact technology can have on day-to-day life. “I recently spoke to someone with diabetes who told me they were unsure about diabetes technology when they were ﬁrst offered it,” remembers i . “After looking into it and trialling it they described their self-management as ta ing a turn.” Increasingly, digital health technologies are being used to help people with management, notably through smartphone apps. “These might be apps to support someone to lose weight, to look up the amount of carbohydrates in their food, or to learn about ways to deal with the emotional impact of their condition,” offers Liz. It is estimated that between 2019 and 2020 the downloads of diabetes-related
Improving access to diabetes tech Continually developing innovative products to reduce the discomfort and inconvenience of blood glucose testing, leading global healthcare company Abbott is also passionate about making healthcare accessible for everyone. This includes the products, services and information they provide. Abbott’s FreeStyle Libre Flash Glucose Monitoring System removes the need to interrupt daily routines for repeated, routine ﬁnger pric s. Originally, the NHS roll out of the FreeStyle Libre system applied to select patients with Type 1 diabetes, but the majority of people with a learning disability live with Type 2 diabetes. With this in mind, the NHS decided to offer the system to all patients with a learning disability who use insulin to manage their condition, whether they have Type 1 or Type 2 diabetes. In order to support people with a learning disability, their families and carers, Abbott have now created Easy Read educational materials to help them when they start using the FreeStyle Libre 2 system. Find out more about the system and view the Easy Read information online now (freestylediabetes.co.uk/easyread).
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If you want to know more about diabetes technologies, speak to your clinician or search the NHS Library (www.nhs.uk) to look for relevant apps.
The FreeStyle Libre Flash Glucose Monitoring System Easy Read Information There is Easy Read information available about how to use the FreeStyle Libre system for people with a learning disability, their families and carers.
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social care After plans were announced to increase funding for health and social care in September, charities and care providers questioned whether this was enough to fix an already struggling system
fter years of campaigning from charities, families and organisations, and commitments made in the conservative manifesto ahead of the general election in 2019, new plans were announced in an attempt to improve social care.
STRATEGY On 7 September 2021 the Prime Minister announced these plans in the ﬁrst step to social care reform. This included a 1.25% increase to National Insurance (NI) starting from April 2022 when the next tax year begins. This increase will be paired with tax on share dividends and will become a separate tax on earned income from 2023. The current plans will raise nearly billion in funding over the next three years for health and social care, and there were also announcements to cap the amount individuals can spend on their care. Starting in October 2023, anyone starting care in England will spend no more than , on care over their lifetime with anything over this limit funded by the taxpayer, and anyone with assets less than , will have their care costs fully covered by the state. People who have assets above the lower limit but less than 1 , will also have their care costs subsidised.
Each nation in the UK has their own social care policy, but these individual countries will beneﬁt from . billion a year in additional funding, 15 per cent more than they will contribute through the new levy. The plans aim to protect people from losing everything to pay for the cost of care, but many charities raised concerns that little of the money raised will go towards social care and rather to healthcare. “On the one hand starting an active discussion about reforms is obviously long overdue and any new money coming into the system must help, but I think that social care deserved to have an announcement with speciﬁc measures and speciﬁc ambitions,” stresses Mark Adams, chief executive of Community Integrated Care (www. communityintegratedcare.co.uk). “It was disappointing that it was presented as an announcement about social care reform, but it was really about conﬂating the issues with waiting lists and the need to get hospitals bac to capacity.” While these are things all organisations would like to see improved, there has to also be standalone commitments to improving social care.
Starting an active discussion about reforms is obviously long overdue
then we probably have a Cinderella service within social care and that’s unpaid carers.”
EFFECT The social care system has been underfunded for years, with most people having to use their own assets to fund care, but this reached breaking point during the pandemic. “I think it’s become more visible to the general public, previously social care was really only something that you saw when you had close family or friends that needed to access the system,” reveals Mark. “People are generally more aware of it but I think the nature of the work is becoming even more complicated. “The mixture of intellect and emotional intelligence that people need has become even more critical because people potentially have new challenging situations.”
Alongside social care staff, the landscape of the industry over the last year has left Mark concerned for unpaid carers who have all of the responsibilities of paid carers, without the support or ﬁnancial compensation. “The situation is hard enough when we’re trying to give people support and help people with mental health issues, but if you’ve not got that kind of support because you’re on your own, the world must feel like a very lonely place,” empathises Mark. “Unpaid carers have had exactly the same pressures but perhaps haven’t had the same support because they’ve had to ﬁght long and hard to get any kind of government recognition,” he continues. “If social care is the Cinderella service against the NHS
The industry is already understaffed, with constant callouts for more workers to join, but the incentive of good hours and good wages is missing. The increase to NI will cost the average care worker an additional £140 a year in tax, this could amount to a week’s wage for some people. “Obviously with NI you are able to get a contribution from employers and employees and spread the load, the only issue is that for those who are elderly who aren’t working, they aren’t contributing to a fund which perhaps disproportionately beneﬁts them,” explains ar . eople that already desperately need a revision to their pay conditions have actually gone backwards by about a week. “For every social care worker who can’t afford a tragedy, who can’t bury their parents or repair a boiler or a broken fridge because they have no savings, that should be taken on board by the governing party of the country as it’s their responsibility to ﬁx.” Mark, alongside his colleagues, is attempting to adapt working methods to entice new staff to the industry by piloting a four-day working week to make the role more ﬂexible and create a better work-life balance. “We would like to have a system that ultimately gives people professional esteem, allowing them to see a career progression in social care, and to once and for all get rid of the misnomer that social care is low skilled,” stresses Mark. Since the initial announcement, the UK Government has dedicated an additional £162.5 million to improving recruitment and retention in the sector. But, organisations remain desperate to see a further commitment from the government to properly regulate and fund social care to ensure both staff and those being cared for feel valued and are treated correctly.
FOR MORE INFORMATION Read what other organisations are calling for in social care reform at www.keepyourpromiseboris.com
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Ellie Challis: My Tokyo 2020 Journey As we look forward to a new year, Tokyo 2020 silver medallist and Enable columnist Ellie Challis writes about the journey of her first Paralympics at just 17-years-old PHOTOS: IMAGECOMMS_PARALYMPICSGB
would change the whole atmosphere in our ﬂat of six girls. The team spirit in our group ept me motivated for the whole trip after each person competed we would decorate their room doors to celebrate. hile was waiting to race, got to watch ouise win silver. t was 1 minutes before got into the water and was so happy for her. This feeling was made even better when realised had won silver too.
s prepared for my ﬁrst aralympic ames the lead up was different than usual wasn t able to attend trials because had an operation in pril 1, so it was anything but normal. or me it was short and uic , but this didn t feel li e a setbac . Than s to my age gain ﬁtness uite uic ly so in a few wee s was bac to preparing for To yo. hile my training was ramping up, balance was important. t this point, was at college studying a evel atisserie and onfectionary ills course. felt luc y that my college was really helpful, ensuring could manage my wor load and studies at once. fter training hard, was so excited to travel to To yo. hen we arrived my team and did a wal through of the athlete s village had no idea what to
I just had to wait to touch the wall and see what happened expect but it was so cool getting to see the buildings, then getting to go into our rooms to see the cardboard beds that were designed especially for athletes from recycled cardboard.
TEAM SPIRIT The time came to compete but was more nervous for my team mate and To yo roommate ouise iddes. he was competing on the same day and new that if only one of us medalled it
don t often get the chance to race against my class at orld eries events, competing against different classiﬁcations because it is based on points. To yo was my second opportunity to compete against my classiﬁcation. also new was the person that came out of nowhere at worlds in 19, where not everyone expected me to place so highly. aving been that wildcard now there can be surprise performances, so ust had to wait to touch the wall and see what happened. n that moment felt so happy and new that my family would be so proud. went home with my silver medal but also with an important lesson get goggles with dar er lenses because the lights over the pool are very bright when there s press from around the world ﬁlming your every move. m still smiling from my win in To yo, but m excited to see what happens next and get bac to my hobbies li e snowboarding before preparing for the orld hampionships in . FOR MORE INFORMATION Keep up to date with Ellie on Instagram @ellie_challis and on Twitter @xxebobxx
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A SYSTEM UNDER PRESSURE At a time when the conversation on mental health is continually growing and more people are experiencing mental health problems, quick access to the right support can be life-saving. For too many, this help isn’t coming fast enough
aired with the extreme pressure on mental health services over the last few years has come an increased need for them as levels of stress, anxiety and isolation rise. In July 2021, 41 per cent of people with a long-term physical health condition told the Mental Health Foundation they were experiencing high levels of anxiety and worry, while charities like Rethink Mental Illness saw a concerning rise in demand for support and information. “We’ve been able to monitor the issues emerging from the pandemic
which are relevant to people severely affected by mental illness to make sure we’re giving people the most up-todate information and advice possible,” reveals Gemma Thickett, advice and information service manager at Rethink Mental Illness. In the 12 months leading to 23 March 2021, the charity experienced a 703 per cent increase in people seeking advice and information about anxiety and a 459 per cent increase for advice and information about self-harm. These ﬁgures represent the rise in queries to just one organisation, but also raise the question of why so many
people have had to rely on charities to gain immediate access to these vital resources and support. Wait times for mental health services have been an issue long before COVID-19 was declared a pandemic: NHS England cites a maximum 18 week wait for mental health services, categorising them as non-urgent within their online information. The effect of these long waits is not a criticism of the UK’s healthcare system, often down to funding cuts, a need for more people in the healthcare workforce and a lack of resources, but it is leaving people with little hope of getting better.
VULNERABLE Adrianne was originally diagnosed with depression and anxiety when she was 13, but this was changed when she was reassessed at 22 and received a diagnosis of borderline personality disorder. Now 27, this was a big adjustment for Adrianne, but it also helped her to understand more about herself. ince her ﬁrst diagnosis as a teenager, Adrianne has received different forms of support from mental health services. “I was with the CAHMS team (children and adolescent mental health services) when I was under 18 and I would see a psychologist once a week or every two weeks, but when I moved from the adolescent team things started to get harder in terms of accessing support. To me it feels like the wait list is longer for adults.” As an adult, Adrianne attended things like group therapy workshops but found that she wasn’t comfortable in this environment.
really did not ﬁnd the group therapy helpful,” admits Adrianne, “There was also a time when I was in a very vulnerable space and needed extra help. It was very stressful and with the pressure of the pandemic my mental health deteriorated and I was struggling, so I eventually reached out to my GP and they referred me for more support.”
CONSEQUENCE After being referred as an adult, Adrianne hoped that she would get the help she needs, knowing from her previous experience that things like group therapy wouldn’t help. “I was very clear that I did not want group therapy, I just wanted one on one therapy but when I was contacted found out they hadn t been notiﬁed of this, it can be very disheartening,” reveals Adrianne. “They told me they would refer me for one-to-one support in July and I’ve had nothing, since then I’ve pretty much been on my own. “I’m not sitting here telling myself that I’m going to be seen soon like I used to when I was younger, if I get a phone call one day then that’s great, but I guess you could say that the process has been disheartening.” Despite the long waits for treatment, there is immediate support available in a crisis: people are encouraged to call their local NHS urgent mental health helpline to speak with a mental health professional who can assess them and decide on the best course of care. People are also told to attend their closest accident and emergency department if they have
injured themselves, taken an overdose, or if they do not feel they can keep themselves safe. The common factor with these methods is that the onus is on the person in crisis to seek support. “When you’re feeling that bad you’re not thinking rationally or thinking let me go and get help,” stresses Adrianne.
COMMUNICATION Based on her own experiences, Adrianne would like to see more consistent support and better communication during the wait for support. “Even a text or email every month or two to say you’re still on the waiting list and that they haven’t forgotten about you,” suggests Adrianne. “I just feel like the overall system needs to be changed. It can feel like you’ve been abandoned and that you’ll never get better.” Adrianne has found some solace in support from mental health charities and, alongside Gemma, would encourage others to reach out in this way, even just to learn more about different conditions and coping mechanisms. “For anyone looking for advice or support, I’d recommend visiting our advice pages as a ﬁrst point of call,” advises Gemma. The charity has over 100 topics to choose from, making its website a great starting point to ﬁnd information about mental illness, treatment and your rights.
FOR MORE INFORMATION
Find your local NHS urgent mental health helpline at www.nhs.uk, or support from Rethink Mental Illness (www.rethink. org), Samaritans (www.samaritans.org) and Mind (www.mind.org.uk).
Losing a limb is traumatic But Blesma believes there is life after limb loss
Blesma is the leading charity for limbless veterans We help all serving and ex-Service men and women who have lost limbs, the use of limbs or their sight, to rebuild their lives by providing emotional, financial and practical support. For life. To find out more call 020 8548 7089 or visit T
www.blesma.org Registered Charity Numbers 1084189, Scotland SC010315
CHANGING THE FACE OF RESEARCH In a landmark study, partners around the world are collaborating to find new treatment breakthroughs for Parkinson’s disease
orking with partners across the globe, the Michael J. Fox Foundation have brought together a core group of academic scientists and industry partners to create the Parkinson’s Progression Markers Initiative (PPMI). First started in 2010 and leading to breakthroughs in treatment, PPMI is now in its second iteration, expanding to nearly triple the enrolment numbers and adding online data capturing. The study aims to proﬁle biological and clinical changes across the spectrum of the disease with an emphasis on the signals atrisk individuals display in order to identify the disease and ﬁnd intervention points for better treatments in the future.
BIOMARKERS “There is starting data that has been there since 2010 and the results of that have been impressive, this is just an extension to the study,” explains Dr Nicola Pavese, researcher and chief investigator for the study in the UK. “It will enable us to collect even more data, to have a more powerful course of patients and to explore things that we may not have considered when the study started years ago.”
spotlight In order to achieve the aims of the study, researchers need to identify biomarkers of the disease. These are biological molecules found in blood, other biological ﬂuid or tissues that show signs of normal or abnormal processes, a condition or a disease. hen we want to loo at the progression of the disease and we want to loo at biomar ers, then we need to be sure that we re loo ing at biomar ers for ar inson s and not ust biomar ers of normal ageing,” explains Dr Nicola. “I thin the turning point will be when we have more biomar ers of ar inson s because then treatment developments are very promising.” The variability of ar inson s means it is often difﬁcult to develop treatments that are effective for a large number of patients. ou don t put all your eggs in one bas et, especially with a disease as complex as ar inson s,” emphasises ohini howdhury, head of research at the ichael . ox oundation. ou want to have a lot of shots and the way to do that is to have a lot of targets that are formed from the disease experience. “This is the study that could change everything because it s a study that is not only going to help us better test therapies that could slow and halt disease progression, but if we re successful we may be able to change the paradigm of how we thin about research to not ust treating, but also preventing.” The study will introduce different treatments as data and trends becoming apparent, swapping them out for new ones if they are found to be ineffective.
lthough this is a long study with a three-year recruitment period and then following each participant for ﬁve years, we fully expect that we re going to get results and new insights coming out of it way before the end,” says ohini. e ll be loo ing at the common themes and what we understand about the progression of the disease, how we measure that progression irrespective of the individual differences that may occur.”
PATIENT-LED The study is set apart from others by its dedication to being patient led, something that the researchers involved feel strongly about. esearchers will recruit 4, individuals globally some who are ar inson s patients control participants and people who are considered to be at-risk of developing the disease. In this iteration of PPMI, centres around the world will recruit these participants in locations including North America, Europe and Africa. ichael has said this often if you meet one ar inson s patient then you have ust met one ar inson s patient,” reveals Sohini. “The variability of the experience of ar inson s ma es it a very complex disease to ﬁgure out. a ing the patient the centre of everything is how we do that and it has really become embraced by more individuals in the research ecosystem.” Dr Nicola describes the patients as the stakeholders of the study and a partner in their wor their input and interest is essential to its success. “Parkinson is very complex and we all need to be very driven and
motivated, charities like the Michael J. Fox Foundation or Parkinson UK are very motivated, you also need very motivated patients,” he explains. Using an app, patients and carers are able to report on different aspects of the disease, also reducing the need for clinical visits and tests to gather results. ne of the wonderful things about PPMI is the app,” emphasises Sohini. veryone who is involved in the study will be able to utilise that to provide complementary data directly about their lived experience of disease.” ata will be passed on to the patients, keeping them informed throughout.
FUTURE Both Dr Nicola and Sohini believe that this high level of communication is the future of the research industry. n my experience patients are always very keen on taking part, in helping and being part of the research and I think that should happen even more,” emphasises Dr Nicola. This isn t the status uo in many clinical trials, but studies like PPMI are changing the perspective of researchers. It is also changing the way researchers connect across different pro ects by sharing data in real-time. “One of the beautiful things about is you don t have to wait for a certain period of time to be able to access the data,” reveals Sohini. “In the ﬁrst iteration of the study we ve seen how successful that has been the data has been downloaded over eight million times so far. “If you are going to invest in this and you re going to as so much from the patient community in terms of being participants in a study like this, then you want the best minds in the world loo ing at the data.” The data from the study could inform researchers in the trials they design while PPMI is still ongoing. e re ust really excited as a foundation about where research is going and thin it s important to thin big, think innovatively and take risks,” concludes Sohini. FOR MORE INFORMATION
To ﬁnd out more about the study or how to take part, visit www.ppmi-info.org, or www.michaeljfox.org
Support for disabled people IS MORE IMPORTANT NOW THAN IT HAS EVER BEEN
he Jubilee Sailing Trust (JST) was founded in 1978 with a simple mission: to make sailing accessible to everyone, regardless of ability and background – and during the pandemic, bringing people together has never been more important. It is one of the cruel ironies of this pandemic that its effects have impacted most on the vulnerable, the isolated and the lonely. There are believed to be around 14 million people in the UK living with a disability and, according to research by the fﬁce for ational tatistics ), of disabled
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people said they experienced increased levels of worry and anxiety due to the Covid-19 crisis and subsequent emergency measures put in place, including isolating themselves from loved ones. If proof were needed of the importance of the support provided by JST then the pandemic has underscored its vital role. Over the years, the Voyage Crew onboard the charity’s tall ship, SV Tenacious, has included over 5, wheelchair users, 1,9 visually impaired, 1, with cerebral palsy, 1, hearing impaired and almost amputees. We know not all disabilities are visible; we’ve seen people onboard who’ve suffered a recent bereavement, victims of accidents and even those who are trying to overcome a fear of the water. We also see lots of students suffering with post-exam stress, or are simply seeking a new life challenge – and we see them ﬂourish. Quite simply, we don’t have a typical proﬁle of what our oyage rew may look like – they are everyone from war veterans to opera singers! And with very good reason… Social inclusion is a catalyst to create stronger, more resilient individuals and communities – and we know we achieve that. Whether you have sailing
experience or not – and most people step onboard Tenacious with no experience of sailing – everyone has a part to play. Once onboard, Voyage Crew are teamed up in a buddy system which is often where lasting friendships are formed. Everyone is put into one of four teams, called “Watches” who take it in turns to be responsible for the various tasks required to sail and run the ship all day and through the night. Everyone is seen and treated as equal. Everyone has a role to play and contribute to the best of their ability. As we come out the other side of the pandemic, bringing people together and providing an environment for social inclusion is more important than ever. We are totally reliant on fundraising to enable us to deliver our mission. We have two current fundraising initiatives that will assist us. Our Watchkeepers scheme promotes regular giving and our Pulling Together appeal helps us raise capital funds to ensure Tenacious is kept in ship shape.
FOR MORE INFORMATION
To learn more about the Jubilee Sailing Trust, to join a voyage or donate, visit: https://jst.org.uk/support-us/donate/
FIFTEEN TO ONE Tim Rushby-Smith calls for greater inclusion of the disabled community in a post-COVID world
s the echoes of the Paralympics fade and we are fully immersed in whatever chaos passes for normal these days, it’s a good time to cast our minds back to the opening ceremony, and the launch of the #WeThe15 campaign.
VISIBLE The challenge in 1945 was to rebuild better, and while the circumstances are profoundly different, the same challenge lies ahead for 2022. The #WeThe15 campaign is an initiative focussed on the
one billion people in the world living with disabilities, and the focus is on the next ten years. For much of the population, that means two more Paralympics, as that’s the only time when disability is moved to centre stage. This is what made the campaign launch timely. It was opportunity, a now we have your attention moment. The challenge that lies ahead is to ensure that disability is not forgotten in the bigger conversations around diversity and inclusion. To ensure people with disabilities are active and visible in all aspects of society. The test will be whether organisations that buy in to the campaign are held to account in a way that leads to meaningful change. We must take the opportunity and hope that #WeThe15 maintains or even builds the momentum of such a promising start. The world is not the same. Change has been forced upon us, and there is no going back. So, let’s embrace the opportunity to forge a more inclusive society. Keep having those conversations. Ask “Why not?”
Let’s embrace the opportunity to forge a more inclusive society
Remember that? I hope so. As we emerge from the worst of COVID-19 and into a world on ﬁre due to climate change, there will be calls to “build back better”. The urgency of the situation should warrant a profound rethink as to how we move forward, so maybe now is a good time to reﬂect on the world in 1945. I know that war analogies are tiresome (apologies to anyone who has actually experienced war ﬁrst hand), but the question heard loudest at the end of World War II was a simple one: “What have we been ﬁghting for?” People returned home to heal and rebuild, changed by their experiences. They wanted to look forward to a better life, not return to the inequity that had gone before. This desire for change brought us the welfare state and the NHS. There were huge house-building programmes, a push to make tertiary education free and to provide grants that enabled people from disadvantaged backgrounds to access these new opportunities (ironically, change for people with disabilities did not keep pace with other social transformations, despite the conﬂict signiﬁcantly increasing the disabled population).
Find out more about the #WeThe15 campaign and how to get involved at www.wethe15.org
Enjoy a new freedom!
TRUST IN CARE
As services reopen, the care sector is still trying to recover from the reputation left by the pandemic
he events of the last few years have left many people sceptical over the safety of care homes, but the industry is ready to reassure the families and the wider public that care homes are a safe place for their loved ones.
SECTOR “The care sector has had a very rough couple of years and Covid has accelerated or increased some of the challenges the sector was already facing,” reveals Mark Walford, chief executive and founder of Trusted
Care (www.trustedcare.co.uk). The organisation helps families to search for and compare care providers to ensure they get the right ﬁt for them or their loved one. “In February 2020 there was a surge in demand for care homes as news of the virus was making headlines and rumours of ‘isolating and shielding’ for the elderly were worrying families many of them took the view it would be better for their loved ones to be in a care home than at home alone,” recalls Mark. “The surge soon ended as the virus spread in care homes and enquiries ‘fell off a cliff’. Over the past
TRUST News of the spread of coronavirus in many care homes has left some people wondering if it is the right place for their family members. “The families we support are more aware, educated and in some ways critical of care homes,” reveals Mark. “They have many more questions about not just the level of services but their approach to infection control, family visiting, stafﬁng and activities.” These questions have increased as the world has reopened and carers have had the opportunity to seek more support. “Care homes and their staff have gone to extraordinary measures to ensure that their residents are safe and well cared for,” emphasises Mark. “We survey all residents we place in care homes following a respite stay; since the start of 2021, the quality of the care they receive scores 4.7 out of 5 stars. The people we place in care homes are having a very positive experience.”
RESPITE At a time when many unpaid carers are facing breaking point, opportunities to have periods of respite are especially important. Many people think that care
So many people we speak with are at breaking point
12 months they have been gradually recovering and back to pre-pandemic levels, however the needs of those now going into care have greatly increased. “The families who are contacting us are at a crisis point, local authorities are under immense pressure to meet demand, which is resulting in a long wait for many people who need support today.”
homes only provide long-term care, but the settings can also be used for unpaid carers to take a break. Without help and support, carers can’t provide the same quality of care to their loved ones: they must care for themselves in order to care for others. “Caring for a loved one is a huge responsibility and something that requires around the clock commitment. It can create a lot of strain both physically and mentally,” stresses Mark. “Respite allows families to take a break from this pressure, recharge their batteries and then start again once feeling refreshed.” The current pressure on unpaid carers is something that Mark and his colleagues often hear of, with their concerns growing. Periods of respite are especially important now if the person that you care for has deteriorated during the coronavirus pandemic, leaving them with increased care needs. “The easing of restrictions has had
an impact on demand for care services; during 2020 we received very few respite care enquiries as holidays were off the cards for many families,” explains Mark. “This year we have seen a strong recovery in respite enquiries over the summer months. However, we are still ﬁnding people are very cautious about care homes and it might take some time before the public start to feel completely comfortable with care homes once more.” Now, Mark wants to see carers receive the support they need to continue, even if this is short-term. “Unfortunately, so many people we speak with are at breaking point: it isn’t an admission of defeat to ask for support, or to take a break,” offers Mark. Respite breaks aren’t just important for carers, they can also be beneﬁcial for the people that they care for, giving them more socialisation and a chance to try new things. Teams like the one at Trusted Care understand that not everyone will feel comfortable leaving their loved ones, but care homes offering respite services can be trusted. There are processes in place to ensure care homes have all of the information they need to properly support your loved one before they arrive for their break. “It starts by understanding their loved ones needs, location and time requirements. Based on the information provided, we will go out into the local market and present the family with three to ﬁve care homes that tic their boxes,” explains Mark. “Once the stay is complete, we will ask for their feedback. Feedback helps us and other people seeking respite to make an informed decision on which provider is right for them.” Respite breaks can be a lifeline provided by care homes. By putting your trust back into them, you can ensure your loved one is safe and well.
FOR MORE INFORMATION
Alongside care homes, organisations including Revitalise (www.revitalise.org.uk) provide respite breaks.
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SUPPORT AFTER AN ACQUIRED DISABILITY After acquiring a lifechanging disability, the right support can ensure you live a happy life
cquiring a disability can change your life overnight, leaving you overwhelmed and wondering where to turn. Over Christmas 2014, mum of two Tracy became an amputee after having sepsis. With the right support, she has been able to live her life fully.
UPSIDE DOWN “I had pneumonia and I went into hospital, they found out I had sepsis and, as a result, I was put into an induced coma,” explains Tracy. “I was very fortunate to be alive because my organs had started to shut down.” Due to the infection, Tracy had to have both her legs amputated, but because she was in an induced coma she wasn’t aware that this was going to happen.
“At the time my youngest son was only 16 months old, it was as if my world was blown upside down in the blink of an eye,” remembers Tracy. “It was a massive shock for me. I didn’t know that anything had happened, I just went into hospital then I woke up and both my legs had been amputated below my knees.” Although the change was hard for Tracy to come to terms with, it didn’t affect the connection she has with her children. “They don’t treat me any different, I would tell other parents to try not to overthink anything because I did, I still overthink sometimes,” admits Tracy. “I had the craziest, distorted thoughts but you’ve just got to be yourself and your children will love you for whoever you are. “They are proud of me and I never thought I would think that when I was in hospital.”
FINDING SUPPORT During this time, Tracy reached a dark place and felt like she couldn’t go on, she recalls: “I was in hospital and I felt like I was the only person like this, I didn’t think there were other people. It sounds awful now but I didn’t want to continue. “That was a long time ago and I’m through the other side but it was a very dark place.” The support Tracy received during her time in hospital and during her rehabilitation at Roehampton, was key to how happy she is now. “Without going to Roehampton, I don’t know where I would be because they were remarkable,” enthuses Tracy. hen you ﬁrst become an amputee, the ﬁrst couple of years you’ve got so much support and you’re attending so many different appointments. “But at times I felt so alone and that happens when people don’t know what’s available to them. You need to reach out to people and that’s why the Limbless Association is so good,” offers Tracy.
The value of friendship They are proud of me and I never thought I would think that
UNDERSTANDING The Limbless Association offers free support to amputees through different groups and by connecting new amputees to people who have been through the experience themselves. Tracy began volunteering with the charity in 2018 and now works there, helping others. “The Limbless Association has its Volunteer Visitor peer support programme and that would be really beneﬁcial for family members because it means they know this support is out there when their loved one is ready,” emphasises Tracy. While Tracy’s amputations were unexpected, there are some cases when people have time to prepare. Speaking to another amputee can be especially helpful at this time. “You can be matched up to an amputee with a similar sort of amputation to you or with similar interests,” reveals Tracy. “For example, if you have children then you might be matched up with me. You don’t have to have the same level of amputation to understand.” Utilising the support provided from organisations like the Limbless Association can make a big difference after acquiring a disability, don’t hesitate to reach out. FOR MORE INFORMATION
To ﬁnd out more about the imb ess sso iation, visit the harity s website at www.limbless-association.org
Life can feel lonely after acquiring a disability, especially if you don’t have a network of friends and family there to support you emotionally. Leslie, who lives in London, has been a wheelchair user since he had a stroke in 2010, having previously served in the Australian Armed Forces and worked as a mechanical engineer. When he acquired a disability, his daily life completely changed. “My day-to-day life starts when I crawl out of bed and into my wheelchair, where I sit until midnight or 1am when I crawl from my wheelchair back to bed, which is completely different than prior to my disability when I worked 14 hours a day,” explains Leslie. “My disability was caused by a stroke and whilst it’s changed my physical ability it has not distracted from my ability to use my mind and direct others.” Although this is the case, Leslie has found it difﬁcult to ﬁnd wor , leaving him ﬁnancially vulnerable and with his disability meaning he is now unable to pursue his previous hobbies in the same way. “Some minor changes included not being able to work, having my license revoked and not being able to drive any longer,” reveals Leslie. “Not being able to work, my income dropped to the point that I received less from social security payments per year than I used to get paid monthly before my disability. In addition, I was unable to climb on my boat and playing guitar was impossible.” uring a difﬁcult time, companionship has been essential to Leslie’s health: his neighbour sometimes cooks him food and he ensures he is in contact with his sister in Australia and daughter in America. “My neighbours, friends, carers and council workers have been fantastic in trying to help but of course aren’t there when needed most,” admits Leslie. During these times, Leslie has found solace in the Age UK Telephone Friendship Service. Through this service, Leslie has been matched with a volunteer befriender who chats to him every week. “I rely heavily on my weekly friendship call as my main weekly social activity,” reveals Leslie. f you or a loved one could beneﬁt from this service, visit the Age UK website (www. ageu .org.u ) to ﬁnd out more.
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IMPROVING HOSPITALITY ACCESS In a UK first, a Disability Ambassador has been appointed for the hospitality industry to improve access for disabled people, both as consumers and employees
he hospitality industry is essential to the economy, but it also underpins the social lives of people throughout the country. Now, the industry has a new ambassador to identify and address access issues for the disabled community. In a three-year appointment, chief executive of UKHospitality (www. ukhospitality.org.uk), Kate Nicholls, is at the helm of this change. The national trade body for hospitality businesses and employers represents over 700 member companies, operating around 100,000 venues across the UK. Did you have previous links to the disabled community before taking on this role? I have always been passionate about diversity and inclusivity, improving access and equality of opportunity for all. My focus has been on ensuring that we consider disabled access in as broad a way as possible to improve the experience for as many people as possible. I found out that I had been successful in my application over the summer and am delighted that the overnment has, for the ﬁrst time, a
dedicated ambassador for the hospitality sector. During my career, I have worked with a wide range of social and health campaign groups and the disabled community to understand access issues and potential solutions. I have also been actively involved in the Blue Badge Awards, seeking to promote best practice in this area of accessibility within the hospitality sector, and working with the disabled community in this regard. How will you work with disabled people within this role? Working with Disability Ambassadors in other sectors, we are looking at innovative solutions to improve accessibility across all parts of life. Most importantly, because this is a three-year role, there is an opportunity to listen and learn ﬁrst to ﬁnd out what is really wanted and needed. It is also important to note that the role is to reﬂect that back into the sector to improve access – so to be a champion within the sector, as well as of the sector and what it is doing. I am keen to broaden the understanding of disability within hospitality and in particular to highlight the hidden or invisible disabilities, which are often
overlooked but which can pose as much of a challenge in accessing employment and services. What action will you take to ensure the hospitality industry is an accessible place? First and foremost, I need to listen, learn and understand the challenges and how disabled people want to overcome them. I can then ensure that we put in place the action plans necessary to promote best practice. A lot of the feedback I have had to date is around honest communication and transparency about what is and what is not possible – everyone’s experience of disability and access is different and we need to ensure that we have that open dialogue about physical access and mobility. It is then about ensuring that we have a series of steps in place to address areas where accessibility is more challenging and developing toolkits, training and support tools for businesses. FOR MORE INFORMATION Keep up to date with Kate’s work on Twitter @UKHospKate
Give the this Christmas
“When my grandparents died I had nobody. Now Mencap gives me a reason to get up in the morning. My Christmas wish would be for more people like me to get help and stop feeling lonely.” - Darren
Text HOPE5 to 70020
to donate £5 this Christmas You will be charged £5, plus your standard network rate. 100% of your donation will go to Mencap. By texting, you are agreeing for Mencap to phone or text you to tell you about our work and how you can help. If you wish to donate and not hear from us again, text HOPE5 NO to 70020. For more information call 0207 696 6007. Mencap is a registered charity 222377 (England and Wales); SC041079 (Scotland). 2021.065_2
2021.065_Xmas appeal_Enable magazine_A4 ad.indd 1
with mencap Mencap are here to help as feelings of loneliness rise in the lead up to the festive season
eople with a learning disability can often feel lonely or isolated, but these feelings are exacerbated as Christmas approaches. Mencap understand this and are here to offer a helping hand through their services. Ali Pike is the director of communities and programmes at the charity. “We’re concerned that people are isolated and alone at any time but especially in the run up to Christmas, I think as it gets darker people get more anxious about going out, the impact that has is really concerning,” explains Ali.
“We have lots of different programmes that people can engage with in the community or through our network of afﬁliated organisations li e community groups, sports organisations, telephone support. “This Christmas, our loneliness campaign will really bring awareness and hopefully bring support in communities because they will be more aware of people with a learning disability.” Mencap’s programmes are wideranging and person-centred, providing a ﬂexible approach that ﬁts each individual and their speciﬁc needs.
Darren attends Mencap’s Me Time service three days a week and has been able to thrive thanks to this support. The service has been a lifeline for Darren whose partner of 15 years passed away in 2008. “When Trace passed away I was depressed. I was really unhappy and would just sit at home and drink beer,” remembers Darren. “After Trace died I started going to the day service run by Mencap. In earlier years, I was drinking a lot and I had lots of problems with being angry. “I did not know how to control my feelings and lots of people did not want to be around me so I did not have any friends.” The staff at Mencap helped Darren to cope with this and after around a year, Darren became comfortable asking for support when he needed it. “I am much happier now and I hardly ever get upset and angry. I have friends now and I am much more sociable,” enthuses Darren. “I now get invited to people’s birthday celebrations and have been to parties and meals out.” Mencap have also supported Darren with healthy eating and exercise, including teaching him about portion sizes, cooking and food safety, and supported him when he felt more comfortable speaking with Mencap staff than his home support. “Coming to Mencap means I have a social life, can get help with any problems and gives me a reason to get up in the morning,” expresses Darren. “If I did not get to go Mencap I would just be alone at home watching TV all the time.”
GET INVOLVED Mencap are always there to offer support if you are feeling lonely, not just during the festive season, but they are also on the lookout for volunteers to offer this help. “We are always looking for a really wide range of people with different experiences and skill sets to bring to our wor ,” conﬁrms li. FOR MORE INFORMATION Find out more and contact Mencap today at www.mencap.org.uk
The festive season can feel overwhelming for some people in the autistic community, but the right planning and support can ease anxiety during this period
THE FESTIVE SEASON A
s Christmas approaches it is a time for celebration, but changes to many aspects of the world around us can cause stress, confusion and anxiety for some autistic people. Anthony, who volunteers with the National Autistic Society, and his wife Louise have two autistic sons, Logan and Mason. They have learnt how to prepare for the festive season in order to ease the pressure on their children.
OVERWHELMING “Christmas is an interesting one with our children and with routines, Logan, our older son, is a massive sensory seeker so he likes everything to be bright and colourful and loud for Christmas. For him it’s a really fun, cool season,” explains Anthony, “Although that is the case, it can all become a little overwhelming and he needs time afterwards to really relax and calm down.” While Logan loves Christmas, he also ﬁnds it hard to read faces, ma ing aspects like visits to Santa a challenge
when faced with a hat, beard and glasses. Logan’s younger brother, Mason, also enjoys the festive season, but due to often experiencing anxiety, this time can be overwhelming. “Mason’s anxiety can be a problem at Christmas: when you throw in all of the Christmas lights, all of the decorations, it really is a struggle,” says Anthony. “He is very confused as to why stores have to advertise Christmas so early. He doesn’t understand why as soon as alloween ﬁnishes the next day there s Christmas decorations on the shelves when Christmas is still at least another month or so away.” The family isn’t alone in their experiences, this is common for people in the autistic community regardless of age. “It’s not just you, there’s a whole other community that also feels the same way, everyone is different everyone and everyone has different needs,” explains Beth Robertson, campaigns manager at the National Autistic Society.
ROUTINE Beth would encourage people to listen to others’ concerns during this time. “There’s all the Christmas decorations and music and all the changes in the shops, at school and at work, then there’s also a lot of social pressure,” emphasises Beth. “If someone says I don’t want craziness or gifts, it’s because it will cause them stress, even if you think that it’s a nice thing to do.” Changes in shops, including loud Christmas music and decorations, are one thing that the organisation is trying to aid through their campaigning. “We’ve been campaigning for stores to bring in quiet hours for people even outside of Christmas, they are helpful if people really struggle to just go in and do the shopping,” explains Beth. Beth would recommend planning out the festive season as much as possible, shopping when it’s quiet and only going places you or your children feel comfortable. Forward planning has become essential for Anthony and his family
during this time, he explains: “Both our children like routines but in very different ways, so Logan likes us to give him a simple plan so he knows what’s going to happen tomorrow. He communicates a little bit differently so we use sign language, Makaton or maybe pictures to show him what he’s going to be doing. “With Mason, because he’s got quite severe anxiety, he really overanalyses the routine so he likes to know what time we’re going to leave to go somewhere, how long we’re going to be there for, how long the activity that we’re going to be doing is going to take.” Effective and tailored communication is key for the family, like it is for many others, but there are also additional ways that they prepare. “Logan struggles with the packaging in shops at Christmas as everything changes from cans of coke to bags of crisps,” emphasises Anthony. “One major problem we had a previous year was that Logan’s favourite snack is Walkers ready salted crisps and
he knows them as the red Walkers packets. One Christmas they had some promotion with Mariah Carey and they put her face all over the packet. “As a result, he then wouldn’t eat them because they were no longer his red packet of Walkers crisps. If things like packaging in shops change we will start stocking up on Logan’s favourite snacks to make sure he’s got the right packaging during the Christmas period.”
PLANNING When planning ahead, it is important to consider the whole festive season, not just Christmas day itself. “Have a schedule so you can see each day, what you want to do and so you know what you’re comfortable with,” offers Beth. “If you’re going to be spending a lot of time with other people make sure there’s a quiet space that you can go to just take time out. “Do everything at your own pace and only do things that you want to.” Having conversations with friends and family that you expect to see
during this time can help you prepare and ensure they know the best way to approach each situation. For parents, Anthony recommends using things like social stories as a visual aid in explaining Christmas to children. “That helps them to understand this time of year and I would also say that we try and stay with school as much as possible,” reveals Anthony. “Say the school starts discussing Christmas on 1 December we’ll sort of start preparing then from 1 December, that keeps everything as uniﬁed as possible for the children.” Preparation and communication are helpful to ease the pressure around the festive season. By implementing these in advance, you can help ease stress for yourself or a family member.
FOR MORE INFORMATION For further advice and information contact the National Autistic Society (www.autism.org.uk) or Ambitious About Autism (www.ambitiousaboutautism.org.uk).
KIDZ TO ADULTZ NORTH A free event for children and young people with disabilities and additional needs, and the families and professionals who care for them.
WEDNESDAY 17TH NOVEMBER 2021 9.30AM - 4.30PM
WWW.KIDZEXHIBITIONS.COM 0161 214 4592 INFO@DISABLEDLIVING.CO.UK
150+ EXHIBITORS FUN & FEATURES CPD SEMINARS
Creating opportunities for others Volunteering is more than just a rewarding experience: it can teach you invaluable skills that go on to benefit different areas of your life, all while supporting others
roviding meaningful volunteering opportunities, Stay Up Late run Gig Buddies and Sports Buddies, helping people with a learning disability to participate in the activities they love. Malcolm Hill is the Gig Buddies co-ordinator at the organisation and spends his time recruiting, training and supporting volunteers, as well as matching them with participants. “It matches them with a buddy who will be a friend to them and help plan and participate in the activities they would choose for themselves,” explains Malcolm. “Things that many of us would take for granted like going to a gig, the cinema or even just for a night at the pub.”
OPPORTUNITIES Volunteers are at the heart of the programme, without them, there is no Gig Buddies project. Luckily, there are more and more people dedicating themselves to projects like this one: research by the Royal Voluntary Service found that 12.4 million people volunteered during the pandemic, with 4. million of them doing so for the ﬁrst time.
By dedicating their time and effort, volunteers are brightening people’s daily lives. “The best part of my role is the match meetings where we introduce buddies. Just getting a sense of the opportunities opening up for our participants is so exciting,” reveals Malcolm. “The volunteers are integral to the whole thing as once they are matched up its them who will build the friendship with their buddy, discuss and help plan the events they attend and of course, in doing so, promote the social inclusion, conﬁdence, independence and an overall sense of wellbeing that our participants beneﬁt from as a result.”
INSIGHT Dedicating a portion of your spare time to volunteering isn t ust beneﬁcial for the people you will help support. “Some say it’s given them the inspiration to get out more themselves,” explains Malcolm. “Others have found that being a Gig Buddy has given them an insight into some of the barriers faced by people with a learning disability and a realisation that far too many people are still denied access to opportunities that maybe, prior to volunteering, they might have taken for granted themselves.
“Most importantly I think our volunteers help put a smile on their buddies face and have a lot of fun in doing so.”
FESTIVE It’s always a good time to start volunteering and there’s always opportunities available from in person to over the phone and virtual volunteering, but during the festive season the need for volunteers is often higher. “I guess we usually see the festive period bringing more opportunities to get out and socialise and our participants are as keen as everyone else to get out there and have a good time,” emphasises Malcolm. “For us the demand is always there – no matter what time of year. But what better Christmas present could one of our participants wish for than to be matched up with their very own gig buddy?” FOR MORE INFORMATION Find your next volunteering role today: Gig Buddies (www.gigbuddies.org.uk) NCVO (www.ncvo.org.uk) Reach Volunteering (www.reachvolunteering.org.uk)
On 2 November Purple Tuesday will encourage businesses around the UK to become more accessible, but the impact can have a lasting effect for years to come
id you know less than 10 per cent of organisations have a targeted plan to access the disability market? This is not only having a detrimental effect on the disabled community, but for the organisations missing an opportunity to beneﬁt both socially and on the bottom line.
PAINT THE TOWN PURPLE
POWER Just in the UK the purple pound – the spending power of disabled people and their families – is worth around £274 billion and is estimated to rise by 14 per cent each year. This increases to more than £2.25 trillion worldwide. Without changes to improve the customer experience, disabled people continue to be undervalued. In an effort to combat this, Purple Tuesday takes place each year on 2 November: a programme for organisations of all sizes and from all sectors to make a change.
part in 2021 and have to make a public commitment to ensure sustainable changes are made. It is free for organisations to get involved with and there are already commitment ideas that have been proven to work in previous years. These include training staff to learn key words and phrases in British Sign Language, formalising quiet hours where noise is reduced or removed, or completing a site The purple JOURNEY access audit to improve pound is worth Each of the organisations accessibility in a £274 billion taking part are on a journey physical space. by making a commitment, in the UK The events of with hopes to inspire and the last 18 months inform others along the way. have emphasised the They are required to implement importance of the online one new activity or initiative after marketplace and its accessibility. signing up to take part. Purple Tuesday’s focus is no longer just Sector partners for this year’s event the high street, but virtual access and include Visit Scotland and Visit England, digital inclusion. Other commitment Sainsbury’s, Boots and eBay, but there ideas include completing an online are participants around the UK from accessibility audit on your website. various sectors. Some of these have a Organisations can also make a global inﬂuence, li e icrosoft, irgin commitment that is new and bespoke edia and eloitte. to them. With tried and tested methods to CHANGE take part, and the opportunity to tap The dedicated day is all about making into a powerful market, the day will the customer experience accessible, bring greater awareness to the need for the main barrier to both consumers accessibility both in stores and online, but there is still a way to go before the and organisations utilising the spending purple pound is truly utilised and the power of the disabled community. ore disabled community is catered for. than 2,000 organisations are taking
While the event only takes place on 2 November, it aims to insight change 365 days a year. For 2021, the organisation behind Purple Tuesday has introduced Purple 365: a subscription service supporting organisations and their staff to access knowledge, understanding and practical approaches. The subscription includes monthly webinars on disability-related topics that align with awareness events, and resources throughout the year to help organisations engage with the disabled community.
FOR MORE INFORMATION earn more and ﬁnd out how to parti ipate at www.purpletuesday.org.uk
THISTLE ASSISTANCE PROGRAMME The Thistle Assistance programme is all about helping to relieve travel anxiety, we want people to feel confident when using all forms of public transport across Scotland.
he Thistle Assistance programme is all about helping to relieve travel anxiety, we want people to feel conﬁdent when using all forms of public transport across Scotland. Our research has highlighted that there is a need to improve the door to door journey for people with mobility challenges allowing them to access the public transport network more easily and with conﬁdence combining ourney planning, wayﬁnding, and disability awareness into one easy to use and versatile platform. The platform would deliver in two key areas which respond to passengers needs as identiﬁed by the ampaign for etter Transport The South East of Scotland Transport Partnership (SEStran) & Sentireal are excited to announce a project that will look to meet this challenge, Thistle Assistance VoyagAR. Tom Houston CEO of Sentireal says: “Sentireal are absolutely delighted to be awarded the contract to deliver Thistle Assistance VoyagAR. Being part of the
solution to help the most vulnerable in our community gain independence in travel is both a professional and personal win. We look forward to working with the team at SEStran to deliver a world class application. inancially this is a signiﬁcant contract and further validation of our investment in local talent in software development, web development, content creation, and rtiﬁcial ntelligence. oyag will be the ﬁrst wayﬁnding application to consider the individual needs of the user and create a journey most suitable to their circumstances. We will be reaching out to charities and community groups to gain input and guidance as we move forward with development.” The Thistle Assistance is a key component of transport strategy in Scotland and delivers on the Scottish Governments ambition to have an inclusive and accessible transport system. People rely on public transport to access jobs, services, facilities, family, and friends. While many of the barriers identiﬁed by disabled people and non-disabled people in undertaking
journeys are the same, the impact can be different . Councillor Gordon Edgar, Chair SEStran says: “If we want people to make different travel choices, we must think more clearly about their whole journey, how each part of it connects, and how we can better integrate those parts. This applies to all citizens but is perhaps even more relevant to those members of our communities that have a disability.” SEStran and the other 6 Regional Transport Partnerships (RTPs), Scottish Enterprise, Disability Equality Scotland, Transport Scotland and Transport Operators are all working towards this ambition. Thistle Assistance VoyagAR is being funded by the Scottish Enterprise Can Do Innovation fund, so, whether you are popping to the shops, going to see a friend, or travelling somewhere faraway the Thistle Assistance Programme is always there to help! Because “A Little Help Goes A long way.” To ﬁnd out more visit www.thistleassistance.com
As Christmas approaches and energy prices rise, it’s time to start a conversation about money
money TIME TO TALK
ften seeming awkward or uncomfortable, talking about money can be daunting, but it is an important step to ﬁnancial health, which in turn can prevent increased stress and anxiety. Job losses, extended periods of reduced income and health problems have all contributed to increased worries around money during the last 18 months. “There’s been winners and losers but for the people who lost it’s been really hard ﬁnancially,” emphasises icholas Hill, senior advice manager at the Money and Pensions Service (MaPS). “We know how important it is to make sure people are aware of the beneﬁts they are entitled to in order to maximise their money.” MaPS provides essential support and guidance around money throughout the UK. “If you have seen your income change then it’s really critical to review how you’re spending your money,” advises Nicholas.
TALK MONEY Taking place from 8-12 November, Talk Money Week gives people the chance to do something vital: start an open, honest conversation about ﬁnances. “It’s really critical to have those conversations so you can start to feel in control of your money,” emphasises Nicholas. “We’ve got range of content which will help you depending on the situation, it might be teaching kids about money or having a conversation about money with friends and family.” Discussions around money are always important, whether you feel like you are in a positive place with money or otherwise. Without this, it can lead to problem debt or mental health problems. “Even picking up the phone to someone like MaPS and having the chance to talk about it with somebody on the other end, it means there’s somebody there to help you and it can make a huge difference to people.”
TIME If you are a carer and help manage your loved one s ﬁnances, or want to spea about your ﬁnancial situation with a friend or family member, ﬁnding the right time to start this discussion is important. “Ultimately it has to be an open conversation,” explains Nicholas. “Really you want to be talking when they’ve got a bit of energy. “You’ve got to think about where you’re going to have that conversation and ultimately, who should be there in terms of caring.” An event like Talk Money Week is a great excuse to bring up the topic of money, or if you are watching a show where the topic comes up. These indirect methods can remove additional pressure. “Maybe there’s something happening with a friend and that’s the way into the conversation,” suggests Nicholas. t s ust ﬁnding something in your life where you would feel comfortable raising it because you don’t want to force the conversation too much. If you are in a setting where it isn’t safe to talk about money, or to call an advice provider like MaPS, you can visit a pharmacy li e uperdrug, oots or Morrisons that has a consultation room. Staff in these spaces have training to support you and help you feel comfortable.
CHRISTMAS The lead up to the festive season can be an especially stressful time when it comes to ﬁnances, with gift giving and a full social calendar increasing the pressure to spend, even when you don’t have much to spare. “With Christmas coming up there’s that pressure which comes with spending, you don’t want to have something to deal with after Christmas, it’s better to plan beforehand,” suggests Nicholas. “If you have changed income whether it be a job loss or you’ve been on furlough, then adjusting to your new situation at this time is so important.” Planning ahead can include helpful discussions with the people you would usually spend the festive season with, even if you don’t feel comfortable telling them the details of your ﬁnancial situation.
“You could go down the line of thinking about Secret Santa where everyone gets one dedicated present for another person or maybe just buy for kids, but having that conversation sooner rather than later means you have the option,” enthuses Nicholas. Creating a budget, or updating your current one, is an important step to preparing for the festive season, considering incoming money and out goings. The MaPS budget planner tool, available on the website, is a great way to get advice on where you can save and avoid problem debt. “It gives you immediate control because it’s a snapshot of where your money is going,” reveals Nicholas. “You can see that if you cut back on certain items for even just three months, you can build up a nice buffer. “Ultimately doing an extensive beneﬁts chec is also a really good housekeeping exercise to make sure you’re getting all of the support you’re entitled to.”
ENERGY As we approach winter and the nights get colder, there are also concerns around rising energy prices and unexpected costs like replacement boilers and other ﬁxes. eing informed can help to ensure you are looking after your physical health at this time. “It’s worth reviewing your provider and making sure you’re paying the appropriate amount,” explains Nicholas. “If you’ve not switched your utility providers in the past year you could save just by switching provider which is a 20-minute task. “There’s also checking whether you can get any energy saving grants, or if you’re not eligible for these then you might go to the Energy Saving Trust website and just make sure you’re checking what you’re eligible for.” Starting a conversation on money, creating a budget and ensuring you are receiving all of the support you are entitled to can make a difference this winter. FOR MORE INFORMATION
Get advice and support from MaPS (www.moneyhelper.org.uk) and the Energy Savings Trust (www.energysavingstrust.org.uk).
A BRIEF INTRODUCTION TO ALCOHOLICS ANONYMOUS
substitute”and for alcohol. By Dr Mani Mehdikhani, CPsychol, PGDip, MPhil, BSc (Hon) Clinical Psychologist Non-Alcoholic A brief introduction to Consistent with the neurobiological view Trustee, General Service Board of Alcoholics Anonymous Great Britain. of social attachment and oxytocin as Alcoholics Anonymous possible factors in addiction, Alcoholics Anonymous (AA), though recovering alcoholics through its Three can be protective understood as selﬂess,
not without controversies, remains
Legacies of Recovery, Unity and Service.
By Dr Mani Mehdikhani, CPsychol, PGDip, MPhil, BScAlcoholics (Hon) Clinical Psychologist and the most widely available, accessible Anonymous is mélange of Non-Alcoholic Trustee, Anonymous Great Britain. and durable mutual aidGeneral recoveryService Board of Alcoholics philosophical and theoretical inﬂuences programme in the world. Though Alcoholics Anonymous thoughon not there is little research(AA), published without controversies, remains the most widely the neurobiology of recovery, existing research accessible literature and focusing onmutual ‘active aid available, durable ingredients’ , there isina the vastworld. bodyThough on the there recovery programme neurochemistry of addiction that is little research published on the neurobiology has lent credence the ‘Disease Model’ of recovery, existingto research literature focusing concept. on ‘active ingredients’, there is a vast body on AA views alcoholism as a progressive the neurochemistry of addiction that has lent illness, and whilst scientiﬁc discourse credence to the ‘Disease Model’ concept.on theviews disease model sought and failed AA alcoholism as a progressive illness, to combat the stigma around addiction, and whilst scientific discourse on the disease AA hassought arguably by instilling model andsucceeded failed to combat the stigma hope in changing the narratives of around addiction, AA has arguably succeeded
which in turn inﬂuenced many other by instilling hope in changing the narratives of treatment and recovery approaches. recovering through its Three Legacies Whilstalcoholics erroneously viewed by some a ‘religious cult’ it Service. views recovery ofasRecovery, Unity and as rootedAnonymous in spirituality (as opposed Alcoholics is mélange of to religiosity per se) which George Vaillant philosophical and theoretical influences which out “likemany human attachment inpointed turn influenced other treatment–and both mediated by limbic circuitry and recovery approaches. the temporal lobeviewed – mayby besome a worthy Whilst erroneously as a substitute” alcohol. ‘religious cult’for it views recovery as rooted in Consistent with the neurobiological spirituality (as opposed to religiosity per se) view of social attachment and as which George Vaillant pointed outoxytocin “like human possible protective factors in addiction, attachment – both mediated by limbic circuitry unity and service within the AA tradition and the temporal lobe – may be a worthy
unity and servicedemocratic within the AA tradition ego-stripping, and can be understood as selfless, ego-stripping, consensus-based approaches that democratic and consensus-based promote social attachment andapproaches building that promote social attachment and building of of connections. Even underappreciated connections. Even practices practices e.g. theunderappreciated ritual of holding hands e.g. ritualreciting of holding in aPrayer circle at in the a circle thehands Serenity the end ofSerenity some meetings, a small reciting the Prayer atplay the end of rolemeetings, enhancingplay social cohesion. some a small role enhancing about AA can evoke strong socialMyths cohesion. reactions some scientiﬁc circles, but Myths aboutinAA can evoke strong reactions its heart is the idea that one inat some scientific circles, but at itsalcoholic heart is can help another alcoholic, the idea that one alcoholic canand helpasanother professional we have an ethical andan moral alcoholic, and as professional we have obligation to at least show respect and ethical and moral obligation to at least show openness towards resources that clients respect and openness towards resources that ﬁnd helpful in dealing with a condition clients find helpful in dealing with a condition that is matter of life or death. that is matter of life or death.
Everyone has the right to loving, healthy relationships, but the dating landscape has changed throughout the pandemic, leaving uncertainty but also opportunity
he lack of face-to-face contact may have left some people anxious and worried about getting back into the world of aw ward ﬁrst dates. ut, the last 18 months have also given a chance to decide what you want out of a relationship with new perspective.
LUV2MEETU Wendy Ponton started out as a primary school teacher specialising in teaching disabled children and young people. This led to an interest in what happens to pupils when they reach adulthood and the support available. ositive relationships, both romantic and otherwise, are ey to having a good support networ . rmed with these experiences, endy is now the dating pro ect development wor er at ft, who run dating and friendship service uv eet . The service enables people to get out and about, supporting a range of events, and activities li e their ingles ingles. “These are meet ups where people sometimes meet potential partners, or through our other events,” explains endy. f we ﬁnd a possible match, we arrange a chaperoned date. ll we as is that members smile and have questions ready to as .”
haperoned ﬁrst dates, where a staff member attends for support, can be things li e a wal , a drin in a caf , or an activity you will both en oy. “Dating is the time when you can both decide whether you want there to be a romantic relationship or you ust want to be friends,” emphasises endy. f a relationship ends, we can also offer advice.”
VIRTUAL The pandemic has brought a new world of dating to the forefront with both positive and negative effects, but has brought different options. “The beginning of lockdown affected our dating landscape dramatically with cancelled dates, wor shops and ingles ingles, but this very quickly morphed into online dates,” reveals endy. ome long term relationships weren’t strong enough to weather long periods apart, but more positively, other new ones developed.” uring loc downs, online dating offered a way to combat loneliness and isolation, especially if people didn’t live with a family support bubble.
PLANNING s the world re opens and socialising restarts, in person dates are also bac on the agenda. o at your own pace,” advises endy. Try not to be pushed into doing lots of things you are not ready for.” lthough face to face is an option, Wendy would advise people to still embrace virtual meets before arranging a date. “Perhaps a meet through video before committing to an in-person date would ensure you actually do want to meet them, and would ease you bac in,” suggests endy. ave a chat with the person you are going to meet ﬁrst. Would they be happy with an outdoor meet? re they happy to wear a mas in busy indoor areas? re they happy to build up slowly and safely?” The dating landscape has changed, but remember that there are options available to ﬁnd new friends and relationships.
FOR MORE INFORMATION Visit the Hft website (www.hft.org.uk) for more information and for Easy Read guides on things like remote dating, texting and phoning etiquette, and how to process a break up.
A LUXURIOUS HAMPER We’re helping you celebrate the new year with the chance to win a luxury hamper worth £100
of Bettys classics: Florentines; Yorkshire fruit cake in a tin; Yorkshire gingerbread; Yorkshire shortbread caddy; chocolate and orange biscuit box. You can enjoy all of these treats at once or make your hamper last, saving the chocolate tasting box for a special occasion. The hamper also comes with a strawberry preserve and onion chutney, perfect for toast and crackers. The hamper is ﬁlled with the ﬁner things in life, helping you mar the festive season and the new year in style.
TERMS AND CONDITIONS: All entries must be received by Tuesday 21 December 2021. The prize is one hamper which will be sent to the winner. The contents of the prize may differ from the images and descriptions included here. The prize in non-transferable, non-refundable, there is no cash alternative and annot be so d to another party ne entry per househo d The pub isher s de ision is ﬁna
hat better way to mark the end of another year than with a luxurious hamper ﬁlled with sweet treats? As 2022 approaches, you could win the Belmont Gift Box from Bettys, a beautiful hamper style gift box ﬁlled with a little bit of everything. Created by the renowned Yorkshire tea rooms, Bettys, this hamper features an array of hand-picked products from the company. From cakes to biscuits, chocolates to chutneys, tea to coffee, there’s something for everyone to enjoy in the box. With this hamper you can brew the perfect cuppa with a box of 80 Bettys Tea Room Blend tea bags and a bag of Bettys Café Blend Coffee. You could even hold your own afternoon tea and pair your hot drink with one of the sweet treats included. The luxury box includes a range
HOW TO ENTER To be in with the chance of winning this prize, simply send us your name, contact details and where you picked up your copy of Enable to competitions@dcpublishing. co.uk quoting Luxury Hamper. Or visit the Enable website and enter online at www.enablemagazine.com/luxuryhamper All entries must be received by Tuesday 21 December 2021. Good luck!
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PLEDGING AGAINST HATE CRIMES D
uring 2020 and 2021, online disability hate crime rose by more than 50 per cent in England and Wales. This latest police data, gathered by charities Leonard Cheshire and United Response, shows that this spike took place during a period where many people in the disabled community were forced to stay at home during national and regional lockdowns. A hate crime is a criminal offence perceived by the victim or any other person to be motivated by hostility or prejudice based on a person’s disability or perceived disability. A hate crime can take place in person, but also online or by phone, and includes things like verbal and physical abuse, threatening behaviour and intimidation, damage to property or harassment. This could be a one-time incident with a stranger, but it could also manifest as an ongoing pattern of behaviour from someone you know.
In response to a disproportionate rise in online hate crimes during the last year, a new campaign asks the public to pledge their support
EXPERIENCE In light of the new data, people are sharing their own experiences of hate crimes in the hope of preventing more happening in the future. This includes Ella who says she wouldn’t always recognise abuse and unwelcome comments she receives on the streets as hate crimes due to the often-misunderstood deﬁnition in the disabled community. “The most common experience for me is people laughing at me or mocking me for the way that I look, particularly – as a person of short stature – when I am out of my wheelchair,” explains Ella. “When I am in my wheelchair, the most common experience is being manhandled and moved out of the way without consent. Many of us experience such a barrage of ableism day in, day out that we are just used to it. We shouldn’t have to be of course, but we are.” Ella 2 enablemagazine.co.uk
as has another individual who has verbally abused me in the past,” reveals Kyle. “In each instance, they were trying to act like nothing had happened. After hate crime, especially if it’s from someone who you were close to, it’s important to try and end that chapter. That can be hard to do if they can contact you still.”
When in her wheelchair, Ella feels as if she is made to feel invisible. “People see a wheelchair, not a person – whereas when I am without my chair, I am a spectacle and more likely to be ridiculed for how I look: which is actually fabulous, by the way.” Kyle, who is a Leonard Cheshire change maker, has also experienced hate crime for many years, starting when he was still at school. “More recently, during a holiday with friends, I experienced ridicule, harassment, theft and even physical violence,” reveals Kyle. “It completely ruined my trip to the point I just wanted to go home early.” “We need to get people to question when bringing up disability is relevant. People have biases about disability, but anyone could become disabled.”
VIRTUAL Hate crimes taking place online have been of great concern during the pandemic, when many people’s only form of social interaction came virtually. “The internet is saturated with ableism, as is TV and ﬁlm, which a lot of us have been indulging in more during the pandemic,” emphasises Ella. “I know that a lot of disabled people have been receiving a great deal of online ableist abuse. It’s like people’s disabled hate has to come out somehow, and the amount of disabled hate online proves how big and real a problem ableism is.” This has been particularly difﬁcult for yle as online abuse often makes it feel like there’s no way to escape the people who previously subjected him to abuse. “The person responsible for one of my experiences of hate crime has tried to reach out to me online,
t can be especially difﬁcult to move on from a hate crime if it is committed by someone close to you, or a colleague from a workplace. Ella has discovered that being creative helps her to process what has happened, she says: “Being able to transmute my painful feeling into art means I have spiritual freedom and also feel like I am making a stand for other disabled people. would advocate for ﬁnding your disabled community and taking solace in people who understand.” Although these methods can help when trying to process an incident, it can be hard to move on and not live in fear of it happening again. “Now I’m just at a point where I don’t want to think about the individuals involved. I just want to forget them,” admits Kyle. “It’s so important to forgive and forget as it opens doors to life for everyone and quite rightly so.” If you are victim to a hate crime, or witness a hate crime happening, you can report it to the police by calling 1 1 or by ﬁlling out an online form, you can also report it online with your regional police force on their own websites. If you would prefer to speak with someone in person, visit your local police station.
PLEDGE In an effort to combat the rise in hate crimes, particularly online, Leonard Cheshire and United Response have launched a new campaign. This focusses on social media, asking people to join the pledge to drive down disability hate crimes on the platforms and support victims. By using #NoPlaceForHate, you are pledging to: call out disability hate crime - if you see offensive language being used or witness abuse you will report it to the social media platform or to the police; be an ally and reach out to victims, showing support and helping them to report the crime, offering to be a witness if they need one; continue the conversation with friends and family, showing my solidarity with victims of online disability hate crime by using the hashtag.
FOR MORE INFORMATION
Learn more about the new campaign and how you can help combat hate crimes online at www.leonardcheshire.org.uk and www.unitedresponse.org.uk
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.
RANGER with Lithium battery £3,225 HEAVY DUTY RANGER with a lithium battery £3,655 STABILITY GUARANTEED – EVEN ON THE TOUGHEST TERRAIN, YOU STAY STEADY AS A ROCK.
T: 01233 666 000 E: email@example.com www.electrokart.com
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Adapted products to provide independence and style if you are on the move or at home HYGIENE
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MERA CARE SHOWER TOILET
limline and discreet, the ignity in ﬁts into the bathroom or bedroom, helping you dispose of incontinence pads and shields quickly. With a 15-litre capacity, the lockable, airtight seal eliminates smells, reducing the need for repeated trips to the outdoor bin, simply drop in used items and shut the lid.
peciﬁcally designed to put the user in control, the Mera Care Shower Toilet is smart, stylish and easy to use. Its advanced technology gives users increased bathroom independence. With adaptations available, the toilet will ﬁt different individuals’ needs, leaving users feeling cleaner and fresher with a comfortable, convenient and hygienic bathroom experience.
BUZZ LIGHTYEAR STAR COMMAND SPACESHIP WHEELCHAIR COVER SET Disney Store, £50.00 www.shopdisney.co.uk
et ready to head to inﬁnity and beyond with this wheelchair cover set. Modelled on Buzz Lightyear’s iconic spaceship, the covers are made from felt and support bars with cut-out window panels, and are suitable for wheelchairs with 24-inch wheels.
HUNTINGTON’S OPTIMUM BED
Medicotech, from £2895 www.medicotech.co.uk 01908 564100
Regular power, endurance and mobility training helps recovery and improves motor skills. Medicotech have a range of bikes to suit all levels of mobility and can be used in active, passive or assistive modes. Give their friendly team a call to ﬁnd out how the Tigo range THERA-Trainer could help you.
SENSORY COZY CANOE Sensory Direct, £131.99 www.sensorydirect.com 01905 670 500
The inﬂatable co y canoe is a source of deep pressure, particularly helpful for children with sensory processing disorder, ADHD and young people who are autistic. Providing a calming hug as they sit, read or socialise, the soft surface can easily be wiped clean after use.
Kinderkey Healthcare Ltd, POA www.kinderkey.co.uk 01978820714 firstname.lastname@example.org
The Huntington’s Optimum bed has been designed to lower the risk of impact injuries. The Optimum’s safe sides are equipped to absorb the force of involuntary movements ensuring safety and enhancing quality of sleep. Optional removable safety bars also add extra strength and durability.
Subscribe to Get the UK’s leading disability and lifestyle title, Enable Magazine delivered right to your door
s the UK’s most respected and exciting disability and lifestyle publication, each issue of Enable Magazine is bursting with relevant and exclusive content from real life stories and celebrity interviews to advice and spotlight features on topics that really matter. Every issue we cover topics pertinent to the disabled community, whether you have a physical, hidden, learning disability and/or mental health conditions, you are a paid or unpaid carer or a medical professional working with disabled people. Last issue we explored the importance of documenting memories when living with multiple sclerosis with Janis Winehouse, mother of the late Amy Winehouse; learned about the importance of respite from unpaid carers; spoke to the young people and charities demanding change from the social care system; highlighted the importance of diversity and inclusion in branding and employment settings; before
speaking to chief executive of The Valuable 500, Joanna McGrath about putting disability on the business agenda. You can expect features like this and much more in every issue of Enable Magazine. If you or the person you are subscribing for are a resident in the UK, a member of the Enable Magazine team is happy to help. After you subscribe, the next issue of the magazine will be delivered right to your door.
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Honda e REVIEW
Cute looks and being high-tech make the Honda e an intriguing option. Columnist Alisdair Suttie asks: does it have the substance to back up the style?
INSIDE Honda is a past master at squeezing a quart into a pinto when it comes to car interior space, and the Honda e is no different. There’s ample room in the front for the driver and passenger, though taller drivers might ﬁnd the seat base a little short on support. The large dash display screens look great and all the essential information is presented clearly ahead of the driver. In the central screen is a monitor for sat-nav, stereo and all the
usual smartphone functions we expect in a car now. Using the infotainment takes a little getting used to, but no more so than most systems of this type on ﬁrst ac uaintance. n the bac , there are only two seat belts, but lots of room for a pair of passengers, and the Honda e is on a par with the Renault Zoe here. Where the onda comes up short is boot space, which will struggle with a wheelchair even when the parcel shelf is removed.
It accelerates smartly and has light, direct steering
The Honda e is available through Motability with an Advance Payment from £749. Find out more at www.motability.co.uk
EQUIPMENT There are two trims for the Honda e, starting with the standard model that has 16-inch alloy wheels, side cameras in place of door mirrors, parking sensors all-round, and rear parking camera. It also has a panoramic glass roof, climate control, heated front seats, and rear privacy glass. Infotainment is dealt with by a 12.3-inch touchscreen with Apple CarPlay and Bluetooth connections. Safety kit includes adaptive cruise control, lane keeping assist, and autonomous emergency braking. The Advance gains Parking Pilot to take care of parallel parking manoeuvres, all-round cameras, 17-inch alloys, and ross Trafﬁc onitor. There s a entre amera irror ystem in place of a rear-view mirror, upgraded stereo, and heated steering wheel and windscreen. The Advance also has a more powerful electric motor for improved acceleration.
DRIVING The onda e is a tale of two halves on the driving front. The ﬁrst to consider is the driving range, which has a maximum of 137 miles whichever of the two power options you choose. Compared to a enault oe or lectric, that s uite small. owever, if you spend all of your time on local runs or around town, it s much less of a concern and recharging the onda is as uic and simple as an . The other side to the Honda e is the way it drives. It is, simply, great fun. In town, it accelerates smartly and has light, direct steering to make tight turns easy and it s small enough to par in almost any space. Lumps, humps and potholes are mopped up with calm composure, and on faster roads the onda e feels planted. otorway drives will The Honda e will not suit run down battery power uite uic ly, but the everyone and the higher Honda is more than happy on this type of road trim level needs a hefty for short stints. Advance Payment, but it’s lectric cars score well for reﬁnement and very appealing for townhush in the cabin, and the Honda e is among the bound drivers. best we ve driven than s to very little rumble from the tyres or suspension.
The Motability Scheme enables disabled people to lease a new car, scooter or powered wheelchair without the worry of owning and running one. Parents and carers can drive on behalf of the customer. The vehicle should be used by, or for the benefit of, the disabled person.
Making life easier for disabled people
“We went on our first family camping trip. Something we couldn’t have done without the new car.” Sam, Elisabeth’s mum
Who can join the Motability Scheme? You may be able to join the Scheme if you receive one of the following: • Higher Rate Mobility Component of Disability Living Allowance (DLA). • Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP). • War Pensioners’ Mobility Supplement (WPMS). • Armed Forces Independence Payment (AFIP).
What’s included on the Motability Scheme? Insurance Breakdown assistance Servicing and repairs
How Motability, the Charity can help We can provide charitable grants for: • Car adaptations to help make travelling as comfortable as possible. • Vehicle Advance Payments for larger, more expensive vehicles. • Up to 40 hours of driving lessons, to ensure disabled people have access to driving tuition in specially adapted cars as necessary.
To find out more visit motability.org.uk or call 0800 500 3186
Tyres and battery replacement
To find out more about the Motability Scheme visit motability.co.uk or call 0800 093 1000
Motability is a Registered Charity in England and Wales (No.299745) and in Scotland (No.SC050642). Motability is authorised and regulated by the Financial Conduct Authority (Reference No.736309). All cars, scooters and powered wheelchairs provided under the Motability Scheme are leased to customers by Motability Operations Ltd, who operate the Scheme on a contract basis for Motability. Motability Operations Ltd is authorised and regulated by the Financial Conduct Authority (Reference No.735390).
INDEPENDENCE ON THE ROAD
Getting a driving license and being able to drive can give you newfound independence, regardless of your impairment. From lessons to insurance, there are tailored services available
rom going to medical appointments to attending social events and visiting friends, learning to drive and getting your own car opens doors to different opportunities.
to search for instructors in your area and offers helpful advice on things like adaptations, returning to driving, and learning to drive with hearing difﬁculties. Once you have your license you have to notify the Driver and ehicle icensing gency ) the organisation responsible for maintaining a database of drivers and vehicles in the about any medical conditions or disabilities.
Your journey to motoring independence starts with learning to drive. This might seem daunting at ﬁrst but most learners need around 30 to 40 hours of lessons to reach test standard: that’s the same as one full-time working week to COST receive a certiﬁcation that will last your ou might have a desire to drive, but whole life. the high cost of lessons is putting isability isn t an obstacle to you off. ou could be eligible for driving: you can get lessons funding through charities like from a specialist instructor otability. who is trained to take your The charity runs the Drivers must unique circumstances otability cheme which inform the DVLA into account. These allows disabled people, trained instructors will their families and carers of any notifiable usually have specially to lease a car, Wheelchair medical conditions adapted cars to help you ccessible ehicle, or disabilities learn for the ﬁrst time or scooter or powered get bac behind the wheel wheelchair by exchanging after ac uiring a disability. their mobility allowance. The Association of The charity offers access to isability riving nstructors www. mobility grants including the riving disabilitydrivinginstructors.com) helps Lesson Grant Programme. This can people with a physical or learning provide grants towards the cost of up disability to learn to drive by connecting to 40 hours’ driving lessons through an them with specialised instructors. The approved instructor to help a disabled association s website also allows you person pass their test. This funding also
covers familiarisation lessons to enable you to get used to a new way of driving or a different vehicle.
INSURANCE f you purchase or lease a car on your own, it is important to ﬁnd insurance that is tailored to your vehicle and situation. nder the isability Discrimination Act 2005, insurers cannot refuse car insurance on the grounds of disability or charge higher premiums to disabled drivers, but there are also specialist providers available. Towergate nsurance www. towergateinsurance.co.u ) and drian lux www.adrianﬂux.co.u ) both provide specialist insurance for disabled drivers. When you are researching providers, make sure you check what’s covered: this could include your wheelchair, hoists or ramps if you have them; car modiﬁcations li e swivel seats and hand controls; a replacement vehicle that meets your needs if you have an accident and whether carers can be added as named drivers.
FOR MORE INFORMATION Access advice on driving and funding at www.motability.org.uk
WINTER SAFETY As the nights get darker it’s important to keep yourself and those around you safe while you’re out and about
he winter can be ﬁlled with fun social activities, but it s arrival comes with dar nights, colder weather and a higher ris of accidents. This time can also mean changes to transport schedules and shop opening hours. t s important to be prepared and plan ahead during this time, especially if very cold weather can exacerbate symptoms of a health condition or disability.
PLANNING s your social calendar gets busier, ma e sure you plan ahead when leaving home. Thin about how you are getting to and from your destination and try to travel with someone you trust if going out or coming home late in the evening. lways try to inform someone of where you are going and don t feel pressured into social situations that you aren t comfortable in.
LOCATION f you use a smartphone, it can be helpful to share your location with a friend, family member or carer while you are out and about or travelling. This can give you a sense of safety if you have to travel alone. f you will be attending different festive events, chec the venue s website or call to as about any accessibility measures that you re uire to avoid disappointment when you arrive.
There are a host of numbers to help you stay safe in different situations whatever the season.
101 105 111 119 159 888
This number connects you to the police in non emergency situations. sing 1 1, you can tal to local ofﬁcers, receive crime prevention advice and report crimes that don t warrant an emergency response. specially important during the winter months, 1 5 is the s national power cut service. y calling this number you can ﬁnd out more about power cuts in your area or report damage to electric substations or power lines. The non emergency number allows you to spea with an advisor who can assess your medical needs, give advice and tell you what to do next. This is best used when your local pharmacy or practice is closed but there isn t an emergency. ntroduced in response to the 19 pandemic, the trac and trace line is used to get in touch with close contacts of anyone who tests positive for the virus to avoid it spreading through the community. aunched by top cams and the lobal yber lliance, this new service helps you to determine whether a call you receive is from your ban or is scammers. The line is bac ed by ma or ban s and technology ﬁrms. This public safety number isn t in place yet but could be introduced by the end of 1. ialling the service would send automatic alerts to emergency contacts li e family, friends or carers if the person doesn t reach their home safely by a set time.
WHEN LIFE GIVES YOU LEMONS
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THE FIGHT FOR LGBTQ+ SPACES While people around the world begin to join the movement for equal rights, the need for accessible spaces for the LGBTQ+ community is a priority for disabled people
lready ﬁghting for rights and recognition as part of the T community, disabled people in this group often have additional barriers to accessing safe, accessible spaces.
PRESSURE aniele ul identiﬁes as a disabled gay man, having been a double amputee since 1 he has experience in the community both before and after ac uiring a disability. y personal experience in the mainstream gay community before becoming disabled wasn t always a very warm and welcoming one,” admits aniele. There is always a lot of pressure on appearance, so loo s and status played a really big role in the mainstream gay community. ou often feel li e you have to appear a certain way ﬁt and slim and handsome and trendy. never really felt li e ﬁtted in any of these and to me that was a very isolating experience in itself.” These feelings intensiﬁed when aniele became an amputee and realised there was few spaces for members of the T community with a disability.
ased on my experience and my observations, it was a very divided community and it was mainly dominated by cisgender white gay men who were fully abled,” recalls aniele. ast forward a few years and the thought of reconnecting with the gay community as a disabled person made me feel particularly stressed and anxious. didn t want these feelings to dominate my life and my social life.” aniele wanted to feel empowered by his disability this acted as his biggest motivation to overcome the difﬁculties he was facing at this time.
INTERSECTIONALITY was luc y enough to come across a group of li e minded individuals and we all share the same vision of wanting to create change for a more inclusive T community,” reveals aniele. nspired by these connections, aniele co founded ara ride, an organisation dedicated to ﬁnding and creating more accessible spaces for T disabled people. e are entirely run by volunteers and we focus on the intersection of being disabled and T ,” explains aniele. This came from a very evident need to address the lac of inclusion
for disabled people within the LGBTQ+ community, the need for more accessible LGBTQ+ spaces, and also a need to promote sex positivity around different bodies and being able to celebrate them. “That was in 2019 so ParaPride today is an empowerment charity, advocating for the visibility, education and awareness of the LGBTQ+ people living with disabilities, impairments, alternative needs and different health conditions.” The organisation supports their community by promoting information, resources and awareness training. “We also want to make sure we celebrate the stories of success and disability empowerment. We support our work by producing inclusive events that cater for different types of disabilities,” adds Daniele. “We also work with venues and other social spaces to produce more inclusive events and spaces that can be accessible regardless of your disability.” Daniele and his team want to bring visibility to this section of the community and give it positive representation: they want everyone to feel like they can engage with the communities they identify with, and to feel included.
SPACES “We believe that all members of the LGBTQ+ community should be enabled to participate in order to help combat the effects of isolation and to combat the social exclusion that surrounds being disabled,” says Daniele. “The disabled community, like other marginalised LGBTQ+ groups, is particularly vulnerable to the effects of homophobia, transphobia and ableism and is frequently the victim of discrimination in society when accessing spaces or areas. “This can be a very isolating experience so we really believe that all members of our community need to feel welcome.” Alongside problems surrounding physical accessibility in many spaces, some issues go further than this: there is a cultural accessibility issue that this community is facing. “Disabled people have reported that they are frequently put off accessing LGBTQ+ spaces and not only because of the lack of appropriate infrastructures,
but also by the behavioural barriers that they have to face,” stresses Daniele. “It comes from clear lack of disability awareness and a lack of information.”
AWARENESS Inclusive and accepting organisations like ParaPride are helping to raise awareness of the current discrimination within the community, and educating people to ensure it doesn’t continue. “There are a number of things that need to change and it is going to take a long time, it’s going to be a long journey,” admits Daniele. “We need to improve the level of communication with our allies across the LGBTQ+ community, particularly communication around venues and other social spaces in order to raise awareness about disability inclusion. “Acknowledging this gap and starting a positive dialogue is already a good start that can open up other conversations. It is going to help to shed more light on the topic and that means we can create a more inclusive LGBTQ+ community.” Starting honest conversations with people both in and out of the community is a good starting point to becoming more aware. Daniele and his team are also running events, online and in person, to help share resources that help tackle isolation. “We talk about love or about relationships, about sex and intimacy, as well as the hook-up culture which is a huge thing in the gay community especially,” explains Daniele. “We will also of course be talking about the stigma and taboo that surrounds the areas of disability and sex. “We really want to encourage everyone to understand and embrace the social model of disability where disabled people are limited by the barriers in society and not by their difference.” By sharing resources, ParaPride are creating change, but anyone can be a part of creating accessible, inclusive spaces, whether they identify as part of the LGBTQ+ community or as an ally. FOR MORE INFORMATION Find out about upcoming ParaPride events at www.parapride.org
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NOTHING ABOUT US WITHOUT US As we approach winter, the world is preparing for a key event in the disabled community’s calendar: International Day of People with Disabilities
hroughout the coronavirus pandemic, the needs of disabled people, their carers, families and others that support them have been brought to light. With people around the globe facing isolation and restricted access to services, an insight was given into just a few of the barriers disabled people often face on a daily basis. On 3 December, disability and the impact of an inaccessible society will be further brought to light as people around the globe mark International Day of People with Disabilities (IDPwD).
BARRIERS Every year IDPwD highlights the importance of removing the barriers that exist for all people living with a disability around the world. The day encompasses both visible and hidden disabilities and impairments. Raising awareness of the importance of inclusion and access in building sustainable societies, it brings to light issues in areas like joining the workforce, ﬁnding support and challenging bias.
As restrictions around the pandemic begin to ease, the day is especially important. It is expected that it will highlight the ways in which the disabled community have felt greater isolation and exclusion during this time due to reduced or stopped services, digital exclusion and the need to shield or self-isolate to stay safe. These ongoing issues can only be solved with greater awareness of disabled people’s needs.
PURPOSE Last year, the day shone a light on hidden disabilities and the impact of the coronavirus on isolation and mental health. While the theme for this December’s annual celebration of the community isn’t yet set, it will encompass the objectives that the day is based on. These centre around: educating people within the community around barriers to inclusion; providing opportunities for education and training for disabled people; providing social and personal support; increasing provision of transport services to support participation in the community; providing enterprise grants
to support the creation of social trading businesses. Stigma and discrimination around disability are still prevalent, with more awareness needed to break down barriers for the disability community as a whole, but IDPwD is a chance for celebration, learning, optimism and action.
GET INVOLVED You can help spread awareness of the barriers for the disabled community on IDPwD via online platforms. Using social media, you can share your experiences and how you want to see the world change for the disabled community. Different charities, along with the United Nations who created the day, will also run events both virtually and inperson on the day.
FOR MORE INFORMATION More information on the day and information on support is available from www.idpwd.org
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Meet the new
MINISTER FOR DISABLED PEOPLE Appointed in September 2021, Chloe Smith MP is the new Minister for Disabled People, Health and Work. Bringing her own experiences to the role, the Minister says she’s passionate about giving the disabled community equal access to opportunities
How will your previous experiences benefit you in this position? In 2020 I was diagnosed with breast cancer. Then followed seven months of gruelling chemotherapy plus radiotherapy treatment, a mastectomy and reconstructive surgery. Experiences like the one I’ve been through can’t help bring to the fore the human-side of being ill and vulnerable, and in need of care. I’ve also family experience, seeing someone close to me drop out of work that they love because of an increasing disability. I want to build on the empathy and understanding I’ve gained through my experience and apply
I want to build on the empathy and understanding I’ve gained through my experience
What was your reaction to being appointed the new Minister for Disabled People? I was delighted when the Prime Minister appointed me as the Minister for Disabled People, to champion those with disabilities and long-term health conditions, and to create a society that works for everyone. Now is the time to make sure we build back better and fairer following the pandemic, remembering that we re not deﬁned by what we can’t do, but by what we can.
it to my approach to the Ministerial role to improve lives of those who need our support the most. Some people live with a disability or long-term health condition for all of their life, while others will unexpectedly ﬁnd themselves in need of support. want to ensure that the vital safety net is ready, whatever the circumstances. What are your priorities while in this position? One of my priorities, as Minister for Disabled People, will be making sure young disabled people get the most out of our multi-billion-pound Plan for Jobs,
and that includes talking to employers about the beneﬁts of having a diverse workforce as we focus on building back fairer. Making sure the voice of the disabled community is heard is something I am hugely passionate about and is a key pillar of the National Disability Strategy which sets out how we will bring their voices to the fore of policy making. In what ways will you work alongside disabled people when creating policy that affects them? Only by engaging with disabled people, their families, carers, disability organisations and other stakeholders will we deliver real and lasting change. One of my immediate priorities in my ﬁrst days as the new inister for Disabled People was to talk to disability stakeholders and visit employment support organisations to meet with disabled people and support workers to hear their views – and that will continue to be a focus of mine. Through our National Strategy for Disabled People and our Health and Disability Green Paper, we are also putting disabled people at the heart of policy making and service delivery. FOR MORE INFORMATION Follow updates from the Department for Work and Penions (www.gov.uk) on social media @DWP and the Minister @NorwichChloe
PREPARING FOR HIGHER EDUCATION Your time in higher education can be some of the most exciting years of your life, increasing your knowledge and independence. With the right preparation and support you can thrive at college or university
RESEARCH Applying and preparing for higher education can be an equally scary and exciting time for both students and parents. The pressure can be exacerbated if you are heading for higher education with a disability, but it doesn’t have to be: arming yourself with information and ensuring you have the right support will mean you succeed and enjoy this time. As UCAS and college application deadlines get closer, you can use this time to start researching different institutions and the varying help they offer. Your time in higher education can be some of the best years of your life, but it is important to choose the right place to study. This can mean avoiding any disappointment when you begin your studies. Whether you already know what you want to study and where, or you aren’t quite sure yet, start looking at websites, course booklets and social media to help you choose. There is a host of additional information available for students with a disability and this should be easy to ﬁnd online for different institutions.
CONNECT Online research is a great place to start, but attending open days, both in person and virtual, is a great way to get a true sense of what it’s like to study
You might have the opportunity to speak to other disabled students about their experiences at an institution before you apply. The majority of universities and colleges will hold these, giving you the chance to look at their facilities, the department you would be studying in, and to meet the people that will be teaching you. You could also arrange a meeting with the provider’s disability services for the same day. A meeting like this is a great opportunity to voice your concerns, talk about your requirements, and address any questions you have about adjustments or accessibility. Some courses have current students attend open days to answer any questions you have and give you a sense of the culture. You might have the opportunity to speak to other disabled students about their experiences and how accessible they have found a campus or course.
If a provider doesn’t offer this directly, you can use a service like Unibuddy (www.unibuddy.com) to connect with current students. This can be especially helpful if you are moving out of your home and to a new place for higher education: you could even make some friends ahead of time.
SUPPORT Once you have decided where you would like to study, it’s time to arrange tailored support and apply for any grants or other funding that are available to help you. The most common beneﬁt to support disabled students is Disabled Students Allowance. Provided by the UK overnment www.gov.u ), the beneﬁt can help with the cost of things like assistive technology. Alongside the government, many institutions have ﬁnancial support available to help with these costs and to ensure you have the equipment and software you need to succeed. Each college or uni will have a dedicated disabled students’ support team that you can contact to ﬁnd out what will be available to you.
FOR MORE INFORMATION Contact the Disabled Students Helpline (www.disabilityrightsuk.org) on 0330 995 0414 or email firstname.lastname@example.org
Durham Constabulary Visit the Join Us section @ www.durham.police.uk where all our current job opportunities can be found. Durham Constabulary welcomes people from all diﬀerent backgrounds with diverse skills to be part of our policing family. Have you got what it takes? As a force we are committed to building a workforce which represents the communities we serve. People with language skills, diﬀerent cultures and backgrounds and disabilities are encouraged to apply our force. For more information and support in relation to Positive Action, please contact: Positive.email@example.com or for general enquiries our HR Team: Human.Resources@durham.police.uk
NHS Lothian Opportunities Over 100 career paths – one employer We recognise the value that everyone brings to our organisation. Through our ‘Job Interview Guarantee’ we will consider you on your abilities and guarantee an interview where you meet the essential criteria for the post. We have a wide range of jobs at entry and qualified level and offer great opportunities such as DFN Project SEARCH a programme for young people with disabilities – and much more. Further information on NHS Lothian initiatives; www.careers.nhslothian.scot workforce-development email: firstname.lastname@example.org vacancies: https://apply.jobs.scot.nhs.uk @NHS_Lothian @yourNHSLfuture
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SAVING LIVESAT WORK With a career in the emergency services, you could save and transform lives every day, giving you fulfilment both in and out of work
n the UK, there are around 145, police ofﬁcers, 5 , ﬁre and rescue personnel and around 1 , ualiﬁed paramedics and ambulance staff currently employed in the emergency services. This is in comparison to the more than million people who live in the . eople wor ing in the emergency services are vital to the health of all of us, and you could ﬁnd your perfect career path in the area. The s emergency response teams are bro en down into four services ambulance ﬁre search and rescue police. n each service there is a range of ob roles and opportunities that can suit different levels of experience and varying areas of interest. hen you wor in the emergency services no two days at wor are the same it s unli ely you would ever get bored in one of these areas. The services are also renowned for a high standard of training and professional
development for employees, plus, the average salary for emergency services obs is , 94. any employers within the emergency services are isability onﬁdent, meaning they are dedicated to recruiting and retaining disabled employees. There are a range of different roles available across the emergency services including ambulance technicians paramedics coastguards emergency planners forensic scientists and more. The most common paths are becoming a ﬁreﬁghter, paramedic or police ofﬁcer. f you have ualities li e compassion, ﬂexibility, the ability to be a team player and are able to stay focussed in a tough situation, then regardless of your experience, or whether you are ust starting out in your career, there is a role in the emergency services for you. ind out how you can ma e a real difference with a career in one of the four services.
AMBULANCE Responding to life-threatening injuries and health emergencies while aiding someone until they reach a hospital, a paramedic is the most common role you will ﬁnd in the ambulance service. To practise as a paramedic, you have to be registered with the Health and Care Professions Council, in order to do this you must successfully complete an approved ualiﬁcation in paramedic science. There are three different routes to qualifying as a paramedic, you can: ta e a full time approved ualiﬁcation in paramedic science at a higher education institution and then apply to an ambulance service; become a student paramedic with an ambulance service and study while you work; apply for a degree standard apprenticeship in paramedic science with an ambulance service trust. Obtaining a university degree is still the most common way to become a paramedic. Regardless of the path you follow to become a paramedic, you have to hold a full, manual driving licence. If you passed your driving test after 1996 then you may need an extra driving ualiﬁcation. This is because ambulance service trusts use vehicles of different sizes. Always check to ensure you have the correct classiﬁcations when applying for a job. Find out more about how to qualify as a paramedic on the NHS website (healthcareers.nhs.uk).
FIRE ireﬁghters wor to protect people from ﬁre and other dangers, as well as giving advice on ﬁre prevention to the public. ou can become a ﬁreﬁghter in a range of ways: by completing a college course or an apprenticeship; applying directly to your local ﬁre service completing a ﬁre service training course.
POLICE: BE PART OF THE DURHAM DIFFERENCE
As a highly physical job, there are additional tests if you want to become a ﬁreﬁghter. ou ll need to pass a ﬁtness test; pass a medical check; pass enhanced background checks; have a full driving licence; be over the age of 18. There are other roles within the ﬁre service if you would be unable to pass these tests, or you would rather help from behind the scenes. You could work in a support role like emergency call handling or in a ﬁre safety role. ou can also volunteer in the service to see what the job is really like and to gain experience until you apply. Read more about what it takes to work in the ﬁre service through the ational Careers Service (nationalcareers.service. gov.uk).
At the heart of Durham Constabulary is the Durham Difference, encompassing the core values of: positivity; fairness; courage; inclusivity; integrity. People visiting the force often say it feels positively different or comment on the visible commitment and motivation of ofﬁcers and staff. This feeling comes from the constabulary’s supportive leadership approach with staff. Durham Constabulary wants all staff to be able to come to work and be their whole, true selves. This allows them to support, value, connect and empower staff to deliver effective and efﬁcient policing services to the communities of County Durham and Darlington. Aiming to be as inclusive as possible, the force offers a generous annual leave entitlement, a comprehensive pension scheme, and a ﬂexible approach to the work/life balance that we all crave. Committed to force wellbeing, the force also has a range of informed, friendly and accessible support groups and wellbeing services, assisting and guiding members of the force with their physical and mental wellness. s a isability onﬁdent mployer, disabled people are guaranteed the offer of an interview with the service. Be you, bring you, be part of the urham ifference ﬁnd out more at www.durham.police.uk
SEARCH AND RESCUE Search and rescue workers have an essential role in keeping people safe: this umbrella encompasses services like the coastguard and mountain rescue. This area of the emergency services has the highest number of volunteers making up the workforce: they are an essential component to its success. You could get into this work through volunteering; a college course or apprenticeship; by applying directly. If you are selected to be a volunteer in a search and rescue setting then you will be expected to commit a certain amount of your time each month to training and call outs, you ll also be expected to have experience in hill wal ing, reading maps and using a compass. In a voluntary role, you will be given training over a 12-month probationary period to ensure you are ready to join.
FOR MORE INFORMATION
Find your next role in the emergency services at nationalcareers.service.gov.uk
VALUING YOUR NEEDS IN THE WORKPLACE T
he ofﬁcial government body responsible for intellectual property rights, the Intellectual Property fﬁce ) is a isability onﬁdent employer, creating an inclusive environment for employees from all backgrounds.
ETHOS Working as a senior business analyst, Chris, who is hard of hearing, feels valued at the company where the whole of a person is considered. “We want all of you: your enthusiasm, your courage, the reality of your life,” emphasises Chris. “You might have caring responsibilities, you might have mental health issues, we want all of those things that make you up as a person.”
As well as her own positive experiences, Chris has witnessed the impact this has had on colleagues and has been encouraged to share her personal experiences in the past. “I think we don’t want to just play lip service, we truly want people to feel that whatever makes up their abilities and work, we do the best we can to make that shine,” explains Chris. This ethos isn’t something Chris has always experienced in workplace settings: her last employer was less understanding of her needs, making the IPO’s support even more meaningful.
TRUST This culture is something that exists throughout the IPO, with dedicated support, diversity networks and useful things like workplace adjustment passports in place.
Creating an inclusive work environment is key to each employee’s success, and in turn, the company’s. The Intellectual Property Office is dedicated to supporting current and prospective employees
In the past, the different employee networks at the company have been able to hold information sessions and panels, answering questions from peers to enable them to work to the best of their ability. “We have this really good network where we try and think of others,” reveals Chris. “We will try to work together to improve the IPO in a collective way.” This is mirrored by senior ﬁgures at the company who are dedicated to listening to feedback. “There’s an IPO board member who’s our network sponsor and he attends virtually every meeting. He genuinely listens and participates but doesn’t lead, I think that’s important,” offers Chris. One of the key things creating this environment is the option to have a workplace adjustment passport, hris explains ach person can ﬁll in their passport which is what their disability means to them, what kind of adaptations they need, and that’s owned by the individual who’s disabled. or has a long term health condition. “If my manager changes then I choose if I share that passport and I think that’s important, it means I don’t have to ﬁght those battles again. t s a lot to do with trust.” With strategies in place to ensure employees feel valued and supported, you could thrive in a role with the IPO.
FOR MORE INFORMATION Find out what job opportunities the IPO have available at www.gov.uk/ipo
British Sign Language The IPO is an inclusive employer. We are building a great place to work where everyone is confident being themselves. Visit Civil Service Jobs and search for the Intellectual Property Office.
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THE POWER OF EMPLOYER SUPPORT Jo Craig, part of the human resource and organisational development team at Audit Scotland, writes about the importance of a supportive employer when balancing a life-long illness and parenting
soriatic arthritis is a lifelong, incurable disease. The symptoms and impact can be severe and debilitating at times, yet I can have weeks of such good health that I almost forget I have this illness. I was diagnosed in my late 20s after suffering from fatigue, joint pain and stiffness, sometimes to the point where even walking was challenging. t is difﬁcult for others to appreciate that the impacts can be as much physical as they are mental. It’s a vicious circle: stress and anxiety are deﬁnitely trigger points and this intensiﬁes the side effects. Being diagnosed with arthritis when I was so young also comes as a surprise to some people – that it isn’t simply an illness that impacts older people. It is
also a hidden condition, which for me creates an additional burden. Often people around me don’t appreciate the multiple impacts of arthritis.
PRIORITISE It has taken me many years to ask for and accept that I need help in the workplace and indeed to realise that employers can and must provide support. Looking back, this illness has deﬁnitely affected my career. Above all, the sometimes-crushing fatigue that continues and lingers during and after a ﬂare up is extremely hard to deal with. I also have a young son and took the decision to work part-time when he was born. It means I can prioritise both my health and family time.
SUPPORTIVE It wasn’t until I joined Audit Scotland in March 2020 that I felt fully comfortable being open and clear about needing adjustments. When I was starting out in my career I didn’t have the awareness I do now of employment law, of my rights and the value of equality legislation. Since starting in Audit Scotland’s HR team I’ve been working from home. There are deﬁnitely beneﬁts to home working, including not having to navigate public transport when I’m tired and in pain. The team have been incredibly supportive, reassuring me from the outset that sometimes it’s ok not to be ok, that I can take time to rest and recover. That there are no consequences in doing so. Now, we’re beginning to plan our return to ofﬁce wor ing. m looking forward to seeing colleagues I’ve only met virtually. I thrive on meeting people and that’s been one of the most difﬁcult aspects of home working. now go bac to the ofﬁce knowing I’ve got an employer I can speak to when my health is severely impacting me, yet getting to this point has been a long journey. Even accepting I have a disability, one that affects my day to day, was a challenge. ut the beneﬁts of this openness are immense, with openness comes a much greater positive: knowing help and support are there when I need it. FOR MORE INFORMATION Discover what career opportunities Audit Scotland have available at: www.audit-scotland.gov.uk
Committed to equal opportunity We’re Scotland’s public sector auditor. We give independent assurance to the people of Scotland that public money is spent properly, efficiently and effectively.
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We are committed to equal opportunity and to a culture that respects difference. We welcome applications from all sectors of the community. We offer an interview to all disabled candidates who meet the essential criteria. As an employer, and in our audit role, we play a leading part in the promotion and application of diversity and equality.
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mentoring A new perspective, different ideas and the chance to share your ideas: there’s plenty of benefits to mentoring in the workplace
uilding connections with people in your industry can open doors to new opportunities, but mentoring can take this to the next level, providing chances to learn for both parties involved. entors can be especially beneﬁcial for people in the disabled community looking for work. “When I was looking for graduate jobs there was quite a number of challenges in that space, not because employers didn’t want to recruit people with disabilities but more because they weren’t aware of what to ask,” explains Steven Jones who founded the Disability Connect Mentoring Scheme. “I’ve always had mentors throughout my time and I’ve just found it so useful, especially if they are someone completely different to me, showing me what works for them and what doesn’t.
That’s has really helped me in terms of looking at what I want to do next.”
REVERSE There are a host of beneﬁts to mentoring and this is echoed in Steven’s scheme, built especially for organisations who want to become more disability aware and inclusive. “All of the mentors on the scheme have disabilities and they really value sharing those really unique insights with organisations that just want to learn,” reveals Steven. “These organisations want to increase the amount of people with disabilities that they employ but they maybe weren’t aware of the barriers or they don’t really know what to do.” Traditional mentoring can be a positive experience for individuals, but when organisations want to learn more about disability and removing barriers, reverse mentoring comes into play.
Steven. “Reverse mentoring is so unique as an initiative because you get a real, honest insight into different people and what they need from the organisation.” The practice challenges people, and the organisations they belong to, to think about what they can do differently and how to drive change.
“This helps you see things from a completely different viewpoint and I think it’s also someone to challenge you a little bit,” offers Steven. “The best way to look at reverse mentoring is it just does what it says on the tin: it’s a typical mentoring scheme just turned upside down. “Typically, you would have someone maybe more experienced train someone junior, but this is shifted the other way round.” Reverse mentoring is popular when organisations are looking to learn about protected characteristics, these are: age; disability; gender reassignment; marriage and civil partnership; pregnancy and maternity; race; religion or belief; sex; and sexual orientation. “Having the reverse mentor share their really unique experience of what works for them and how they deal with their own disability is so important,” stresses
Doing this doesn’t just help the organisation in the current climate, when the conversation on diversity and inclusion seems bigger than ever, it stays with individuals throughout their professional lives. “If someone has real one-to-one dedicated learning on disability they quite often take things away which they will use for the rest of their career,” explains Steven. “They then think about whether they can do things a different way and just generally change their perspective and way of thinking.” This approach allows organisations to reﬂect on their internal policies and procedures, and working out how they can make things like employment processes, staff progression and disability awareness in the workplace more inclusive. “Organisations I work with a sign up for lots of different reasons and some of the reasons are very internal-focused so they want to review let’s say their end-to-end recruitment strategy and they use mentors to look at their job application process,” adds Steven. “Some use it for external points as well, so I work with some companies who have lots of products. “At the moment I’m working with a big shopping centre and they really want to make it a more inclusive environment. From a visual impairment point of view, that could be clear and tactile signage. The mentors wor with ﬁnd it such an insightful and useful experience themselves as well.” Implementing reverse mentoring takes research a step further than reading what can be done to create an accepting and accessible environment, because it comes from someone real, offering suggestions based on their own lived experiences. “Many employers need that direct and detailed insight because they just won’t realise certain things otherwise. They might have an accessible reception
but they don’t detail how far it is to the train station or if there are steps into the building elsewhere,” emphasises Steven. “I think a big part of organisations’ culture comes from senior management but also individuals’ management as well so it’s really that embedded in that knowledge and how they receive it.”
CONNECT The Disability Connect Mentoring Scheme isn’t the only provider of this service, organisations including Disability Rights UK also provide the opportunity for organisations to learn from disabled people directly. or teven, the theme of reﬂection is embedded throughout the process and is a key component to making reverse mentoring successful. “I really emphasise every disability is unique and should really be treated in that unique way as well, but all of the mentors have a really deep understanding of mentoring and different mentoring theories,” says Steven. “It is quite a strategic matching process looking at actually who do I currently have to mentor and what does an organisation want to gain out of this experience?” Steven works with each organisation for a period of six months, starting with an initial consultation and a monthly catch up to understand how the process is working, what they are learning and what they want to achieve. This becomes a more in-depth chat at the three month mark, and at the end of the process they have the chance to reﬂect on what has been learnt and what their next steps will be to implement new practices or solutions. With greater input from disabled people themselves, practices like reverse mentoring can transform the way organisations work, and the way they adapt to suit different people’s requirements whether they have a disability or other circumstances that re uire an open mind and ﬂexibility.
FOR MORE INFORMATION
Find out more about reverse mentoring from Disability Rights UK (www.disabilityrightsuk.org) and Disability Connect (www.disabilityconnect.org.uk).
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on stage Challenging perceptions
Celebrating sisterhood, womanhood and sexuality, one play is changing people’s perceptions of what it’s like to grow up with a sibling who has additional complex needs
ased on the unique experiences of two sisters, SOPHIE is an autobiographical play based on the experiences of Emily and Sophie during their childhood in Hull. Having received Arts Council funding to tour the UK, the one-woman show is changing perceptions of relationships and intimacy when linked to disability.
PERCEPTIONS With a two-year age gap, Sophie being older, the two sisters have always had a strong connection. Now 32, people have always treated Sophie, who has Down’s syndrome, differently due to a lack of information about the condition. “The opening scene of the play is Sophie’s 30th birthday then we kind of go back to my mum as a 22-year-old and Sophie’s delivery,” explains Emily, who stars as both herself and her mother in the play. “With Sophie having Down’s syndrome and the time when she was born, our mum was given all of this
information about how to give her up for adoption because that was just the given.” The play isn t the sisters ﬁrst venture into the arts as a duo: they previously made a short ﬁlm based around a real conversation as teenagers where Sophie told Emily she wanted to feel sexy and desired. “At the time I was 15 and I thought I had to protect my sister, keep her away from boys, kissing, anything like that,” admits Emily. “Obviously that was wrong but it was coming from a place of care.”
DESIRE Through Sophie’s experiences, Emily realised that there had to be more information and education around sex, intimacy and relationships for people with additional needs. Without this, perceptions couldn’t change. The play takes this into account, exploring things like starting their periods, going out drinking and meeting boys. “All of those things that happened very differently were still very much the same,” explains Emily. “These individuals deserve to feel attractive and
desired, it’s dangerous if we don’t start talking about this and offering some kind of information. “We feel very strongly that everybody has the right to desire to feel desired, to explore their sexuality and to explore relationships, as long as they feel it’s a safe space and they have the support that they need.”
CELEBRATION Already on tour, the sisters hope that people watching the play, and those discussing the topics it brings to the forefront, will have an open mind. “It mainly challenges what people think Sophie’s reactions are going to be to certain things and how life is always a pleasant surprise, the whole thing is a celebration,” enthuses Emily. “It’s really fun but it also ticks quite a lot of boxes and it answers a lot of questions that people have in regards to relationships in the disabled community, intimacy, marriage, all of those things.” “There will be people in the audience who want to get married, people who are in relationships and people who are not, so it will be interesting to see all of the different perspectives on it.” SOPHIE is the story of just one family’s experiences, but it’s themes will resonate throughout the disabled community and beyond, helping to change perceptions of disability and relationships. FOR MORE INFORMATION Keep up with Sophie and Emily, and how they are working to change perceptions of Down’s syndrome, on Instagram @_sophie_potter_ and @emkpcurtis
Art The gift of
Still looking for the perfect Christmas gifts? Enter Scope’s first online shop, filled with products designed by disabled artists and designers
aunched during October 2021, Scope has introduced its ﬁrst standalone online shop. The new store comes after the charity too a huge ﬁnancial hit throughout the coronavirus pandemic, but is now implementing a diverse range of fundraising activities to ensure they can provide vital services to support disabled people and their families. ollaborating with ﬁve disabled artists, the shop offers a range of print on-demand designs as well as ready to purchase items.
CREATIVE One of the featured artists is Mahlia Amatina, a neurodiverse visual artist creating multi-sensory experiences of colour, line, shape and form. Mahlia always had a love of art, but this connection was strengthened when she was diagnosed with Asperger’s Syndrome in 2015. “It was six years ago now, I was always a creative person but the two things happened to coincide at the same time,” remembers Mahlia. “I talked to other people on the autism spectrum and it helped me to understand my new sense of self even though I was born with autism.” Mahlia’s diagnosis, her experiences and the experiences of others quickly started to inﬂuence her wor . “I used it to help me communicate my feelings around my diagnosis and what I
was going through at the time, then later it became a lot more interactive,” offers Mahlia. “It was a real catalyst in wanting to do more.”
DIVERSITY Making a statement about the importance of diversity is something that underpins much of the art featured on the products, and is also important to Mahlia who has always been a keen activist. “It’s always been a really important part of my art even before my diagnosis,” emphasises Mahlia. “I think being from an ethnic minority myself, I know that statistically, less ethnic minorities visit art galleries and I was very aware of those sorts of issues so I guess diversity has always been at the forefront of my practice. “I always want to raise awareness and understanding around autism, but also neurodiversity more generally.”
POWERFUL When Scope reached out to Mahlia about the shop, she felt it was the perfect ﬁt having admired the charity s work for a long time.
“I was very excited at the opportunity,” reveals Mahlia. “I’ve always loved the campaigning that they’ve done, it’s very powerful and I feel like they have a lot of impact. To me our values really aligned.” As the gift-giving season approaches, Mahlia would encourage anyone to look at the shop and learn more about the stories behind the products, she says: “There’s a great deal behind every piece of work and so much context. It’s a fantastic gift to buy someone an original piece and a lovely story as well, I think it’s really special.”
FOR MORE INFORMATION Visit the new Scope shop now at shop.scope.org.uk, or learn more about Mahlia’s art at www.mahliaamatina.com
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