Marian Mathieson marian.mathieson@dcpublishing.co.uk
ENABLE MAGAZINE www.enablemagazine.co.uk
DC Publishing Ltd,
198 Bath Street, Glasgow, G2 4HG
Tel: 0844 249 9007
s this edition goes to print, the Paralympics are in full swing. Our awesome athletes continue to inspire, and the Games have ignited conversations about inclusion and accessibility in sport and beyond. The importance of sport and movement is something our cover star, Milly Pickles, knows all about. She shares her story of resilience exclusively with Enable’s readers.
At Enable, we love to tackle tough subjects head-on, from talking to children about dementia, to life a er a stroke. In this issue, we also learn more about the late diagnosis of ADHD, and discover why sleep is so important for good mental health.
We’re dedicated to amplifying the voices of disabled people and those close to them, so in these pages you’ll find a column on airline trouble from Tim Rushby-Smith, candid words on bodily autonomy from Samantha Renke, and the fascinating story of Linseigh Green, an actress whose symptoms of functional neurological disorder inexplicably ease when she takes to the stage.
As always, we hope this edition of Enable informs, supports, and inspires you. We’re here to share stories, spark conversations, and celebrate the community we’re all part of – so if there’s anything you’d like us to cover in future, get in touch.
Till next issue,
20 WHAT A PAIN From flare-up cupboards to spoons, we learn more about managing life with long-term pain.
47 FOR RICHER, FOR POORER
A focus on the impact that ge ing married or cohabiting can have on disability benefits.
A Kindle e-Reader, see page 54
What’s inside
Interview
8 GRATEFUL FOR MY LIFE
Amputee Milly Pickles talks about recovery, marathons and mindset.
10 MOVING MOUNTAINS
Ex-rugby player and adventurer
Ed Jackson on his amazing new film and his charity, Millimetres 2 Mountains.
30 ADHD: BETTER LATE THAN NEVER
Leanne Maskell and Ellie Middleton talk about late diagnosis of ADHD.
43 WE ARE SAVING LIVES
Cor Hutton shares her story, as Finding Your Feet – the amputee charity she set up – celebrates its tenth anniversary.
Voices
23 BETTER WORLD? FOR WHOM?
Enable columnist Tim Rushby-Smith offloads his frustrating experiences after his wheelchair is damaged while on a flight.
28 SHARING THE NEWS
Rhiannon Louden on what happened when she told friends and loved ones about her daughter’s diagnosis of Rett Syndrome.
38 BODILY AUTONOMY: MY TAKE
Samantha Renke offers her perspective on bodily autonomy as a wheelchair using woman.
Motoring
56 KGM TIVOLI
Our motoring expert takes the small SUV out for a spin.
Health
20 WHAT A PAIN
Living with chronic pain is no laughing matter, but Kyleigh Orlebar, who has psoriatic arthritis, explains how she manages to keep a smile on her face, even on her worst days.
33 ALLERGY AWARE
What’s it like to live with the risk of anaphylaxis? Enable’s editor, who has a sesame allergy, investigates.
35 UNDERSTANDING STROKE: A SURVIVOR’S STORY
Stroke can happen to anyone, at any age. We speak to Leah, who – 11 years after surviving a stroke – is still affected by its impact.
40 SWEET DREAMS?
The importance of sleep for good mental health.
Life
15 FOLLOW THE SIGNS
How BSL interpreting is helping bridge the gap between the hearing and Deaf communities, by making music concerts and theatrical performances more inclusive.
18 PUNCTURING THE WALL OF IMPOSSIBILITY
Necrotising enterocolitis survivor Linseigh Green explains how performing on stage has transformed her life.
25 FORGET-ME-NOT
Explaining dementia to children.
51 PRODUCT PICKS
From gaming controllers to adaptive fashion... The latest musthaves.
52 THE DIARY
Brilliant upcoming events, exhibitions and performances.
66 THE JOY OF READING
We discover how reading is becoming more accessible to disabled people, and find out how one writer’s disability influenced her debut release.
Finance
47 FOR RICHER, FOR POORER
Getting married or choosing to cohabit should be a happy time. But the impact on your benefits can be life-changing. We find out more.
30 15 54
Care
12 IT TAKES A VILLAGE
Focusing on the strength of the parent carer community, and the support it takes to raise and nurture a disabled child.
Employment
59 GETTING INTO LINKEDIN
Disability employment expert Jane Hatton shares her top tips for job success using the professional networking site LinkedIn.
60 IT’S NOT WHAT YOU KNOW… Sometimes it’s about who you know too! How building your network can help expand your career opportunities.
63 TIME FOR A CHANGE
Returning to work after you’ve become disabled can be a challenge. If you’re unable to return to your previous role, we look at the support available.
Blind comic heads for Strictly dancefloor
THE FULL LINE-UP of Strictly Come Dancing has been announced. This year, blind comedian Chris McCausland will be taking to the dancefloor. The show will celebrate its 20th anniversary with even more glitz, glamour and unforgettable performances when it comes to our screens this autumn. Chris – a regular on shows like Have I Got News for You, QI, and The Last Leg – will be the show’s first blind competitor.
He said: “If anybody out there is thinking ‘How the hell is he going to do that?’ then rest assured I am thinking exactly the same thing. I don’t dance, I can’t dance, I can’t see the dancing I will have to do. What can possibly go wrong?”
We hope Chris’s appearance raises awareness of visual impairment in the same way Deaf contestant Rose Ayling-Ellis did for BSL when she won the trophy in 2021.
UNPAID CARERS TAKE PM TO TASK
AN OPEN LETTER SIGNED by more than 10,000 unpaid carers was delivered to the new Prime Minister on 15 August. Organised by Carers UK, it called on Sir Keir Starmer to prioritise support for 5.7 million unpaid carers, and outlined how the Government can ensure unpaid carers are properly recognised and supported over the next five years.
Helen Walker of Carers UK said:
“Nearly three quarters of carers whose mental health is bad or very bad are continuing to care even though they feel at breaking point. The new Government has a once in a generation opportunity to ensure every unpaid carer gets the practical, financial and workplace support they need to balance caring responsibilities alongside looking after their own health and wellbeing.”
M&S LAUNCHES STOMA KNICKERS
MARKS & SPENCER HAS launched stoma-friendly underwear. The pants were designed in collaboration with Colostomy UK, and feature an internal pocket to provide all day support.
M&S colleague Jiggy Sohi lives with a stoma, and made the initial suggestion to create the underwear. She said: “For years I’ve known there is a real gap in the market for stoma knickers and last year I built up the confidence to do something about it. I knew that, being part of the M&S family, I had the opportunity to help make a change which would empower women to feel more confident, more beautiful and more included. I’m overjoyed that M&S are now the first high street retailer to launch stoma knickers.”
Made from super soft cotton with light control stretch and elastic at the pocket opening, they’re available online and in selected stores, priced from £18 for a pack of three.
Chris McCausland
Confidence comes from being comfortable in your own body.
So why isn't your prosthetic comfort guaranteed?
With us, it is.
Or your money back.
That's how confident we are.
GRATEFUL FOR MY LIFE
In September 2017, Milly Pickles was electrocuted – an accident that changed her life forever. After multiple surgeries including a below knee amputation, she has learned to stand and walk again, run the London Marathon, become the first amputee to complete the Red Bull 400, and presented with Channel 4’s Paralympic broadcast team. She spoke to Enable’s Kate Stevenson
QYou've faced significant challenges in your life, including your amputation. How did you cope with the loss of your leg?
A: I actually interrupted my surgeon when he was weighing up the pros and cons of amputating my leg. I told him "I'm really sorry, but my leg needs to go. I've seen it – and it's not in a very good way."
Having that authority and autonomy over my decision helped me move forward. I couldn't control what had happened to me. I’d just nearly died, and I was in a lot of pain, but this was my decision. I think if someone else had made it for me, I would've struggled more.
Q: What were those early days of recovery like?
A: I was immobile for about two years when I first lost my leg. I wasn't walking or training. I gained a lot of weight, I developed a binge eating disorder and half of my hair had fallen out due to my trauma. When I looked in the mirror, I wasn't the same person I used to be, but I still felt like me. Eventually I said to myself ‘enough is enough’. I needed to sort my life out. I started to journal and think about the person I wanted to be. I made a plan and I decided to start going to the gym and exercising four times a week. Going to the gym for the first time in a wheelchair was frightening, but I did it. I stayed consistent, started posting on social media and became a Gymshark Athlete.
Q: You recently ran the London Marathon…
A: I genuinely believed I would have zero issues with my training. I was convinced I was going to absolutely nail it. But I cut my leg during training
and couldn't wear my prosthetic. I was in a wheelchair for three weeks, which wasn't ideal, but I still wanted to give it my best shot.
On the day of the race, everything was going really well till I reached 33km. I looked down and saw I was bleeding through my shoe. I'd been checking on my amputated leg throughout the race but I'd not paid much attention to my human foot. I have three toes on my foot – I have half of my fourth toe, and I've lost my big toe.
When I got to the medical tent, I realised that the scar from the surgery that saved my foot had opened. It's really important that I protect the scar, so I decided to walk the last 8km, along with my boyfriend and Joshua Patterson. I still crossed the finish line.
Q: You’ve accomplished so much since your accident. Do you still struggle with what you can and can't do?
A: My body isn't aligned with my mind at all. I find it frustrating because I know I'm more capable than my body allows me to be. When I'm in my wheelchair or I've got horrible phantom pain, it's a constant reminder.
Last year, I couldn't walk for
At the 2024 London Marathon
three months, and I lived alone in a flat. I couldn't even take the bins downstairs. In these moments, you realise the world isn't set up for disabled people.
Q: How important is disability representation in the media?
A: When I was in hospital, I spent hours online looking for people I could relate to. I was desperate to find somebody who could show me that things would get be er. I found a beautiful girl from Brazil who helped me a lot, but I couldn't understand her.
My mum suggested I start posting on social media. I was quite inconsistent at the start. The turning point was when I joined TikTok, and one of my videos blew up – I didn't even mean to post it, but it went viral, and the rest is history. I'm just so glad that I can be the person I never had for other people.
Leg or no leg, I'm grateful for my life
Q: What advice do you have for our readers?
A: Johnny Peacock sent me a video message when I was in hospital. He said: "I know what you're going through is tough, but soon it will be a distant memory." That really stuck with me, and it's true. It's been seven years since I had my accident and I've come so far. You really do get used to being an amputee; you wake up, you put on your leg each day, and it just becomes a new normal. I can't believe I even had two legs before.
Q: You've faced so much adversity, but you've not let it stop you. How do you stay positive?
A: "At least I can be in the Paralympics now." That was the first thing I told my parents a er my leg was amputated. It was the first thing I could think of that I couldn't do before that I could do now. I always try to flip the negative because I very nearly wasn't here. Leg or no leg, I'm grateful for my life.
MOVING MOUNTAINS
Over the past seven years, Ed Jackson’s life has changed immeasurably. From a professional rugby career, to being told he’d never walk again, to watching himself on the big screen scaling the Himalayas. He shared more with editor Melissa Holmes
Naïve and sheltered… It’s not how most professional rugby players would describe their lives. But that’s how Ed Jackson feels about his life before the accident that paralysed him. “Realising how much of the world is out there – outside my rugby bubble – has been the most surprising thing about my journey,” he reveals. Since diving into the shallow end of a pool in 2017 (fracturing two vertebrae, sha ering a disc, and partially crushing his spinal cord), Ed’s life has expanded well beyond that bubble. “I’ve been opened up to how many amazingly kind, generous, selfless people there are in this world who are doing all sorts of di erent things for other people,” he says.
REDISCOVERY
A er his injury, Ed was told he’d never walk again. “My whole identity was wrapped up in being physical and
playing sport,” he admits. “When I lost that, I was le wondering ‘Who am I?’.” Learning there was scope for recovery, he “set out to see how far I could go, never expecting to get to where I am now.”
Surgery, physio, marrying Lois (he met his goal of walking down the aisle), and climbing mountains make up some of Ed’s story. The latest chapter is the release of a documentary – The Mountain Within Me – which charts everything from Ed’s injury and se ing up his charity Millimetres 2 Mountains (M2M), to scaling Mera Peak to raise funds for a spinal hospital in Nepal.
HIDDEN SIDES
But it’s not all majestic scenery and inspiring achievements. “The film touches on the hidden sides of disability,” reveals Ed, “like bladder, bowel, sexual function – points that cause a lot of stress and anxiety.”
The importance of supporting others is one of the film’s main messages. “And the power of community,” Ed adds, “reaching out and helping each other – not just for them, but for you as well.” This approach drives M2M, which Ed and Lois founded when he began to feel more hopeful about his future. The support of family, friends, physios and the rugby community got him to that point. Recognising many people didn’t have that support network, he established the charity.
M2M helps beneficiaries through days out in nature, expeditions abroad and monthly online catchups, as well as a life-changing development programme. M2M supports anyone who’s facing
adversity, from depression and anxiety to spinal injuries or stroke.
HAVE AN IMPACT
“I’m fortunate to be in a position where I can have an impact on other people’s lives,” Ed explains. “That motivates me to keep going.”
“I think that having everything taken away for a while and having to contemplate it never being there again does give you a di erent lust for life,” he admits. “You realise it could all end tomorrow.”
FOR MORE INFORMATION
The Mountain Within Me is screening at selected cinemas now.
Raising a disabled child or one who has additional support needs is a rewarding but challenging journey. Parents and carers often hear the phrase “It takes a village to raise a child” – that’s especially true for those of us caring for disabled children. Editor Melissa Holmes learns more
Parent carers of children with additional support needs require a robust support system – a village – to help us navigate the winding path ahead. The support system is more than the traditional ‘village’ of friends and relatives – perhaps you’ll need to access professional, medical, educational and charitable help too. And these people may become your village – familiar faces you can share your troubles with, offload worries to about your child, and lean on in times of need.
DIDN’T SIGN UP FOR THIS
The physical and emotional demands of caring for a disabled child fulltime can feel relentless. Daily challenges – like managing medical appointments and advocating for your child’s educational needs – are
o en things we didn’t ‘sign up for’ when we became parents. Self-care, sleep, and relationships can fall by the wayside, and we question ourselves all the time: are we doing the right things for our child?
O en, family and friends don’t get it. They might o er well-meaning but misguided advice, or may even distance themselves if they cannot ‘tolerate’ your child’s behaviour or understand the implications of their condition, leaving you feeling isolated, unsupported and judged.
NOT ALONE
But you don’t have to walk the path alone. New, meaningful connections can be made, o en in the most unexpected places. Ruth Stone is a Senior Parent Adviser with Contact, the charity for families with disabled children. Contact runs a helpline, provides information on conditions, and even o ers workshops on topics including coping strategies for parent carers, managing your child’s sleep, and navigating the ins and outs of the education system.
Ruth is a regular face at Great Ormond Street and Evelina Children’s Hospitals in London, where she provides advice, information and support to families whose children need hospital care. It’s fair to say she’s part of an extended ‘village’ of supporters helping parent carers.
“We’re here to support families during a really distressing time in their lives, when their child needs hospital care,” explains Ruth, who has worked for the charity’s project – By Your Side – for six years. “Sometimes parents want to o oad, while other times they need practical help,” she says.
One family Ruth has supported over several years has a five-year-old son with complex medical needs and a life-threatening endocrine disorder. His diagnosis and medical needs meant his mum was not able to return to work. Ruth helped the family apply for Disability Living Allowance and told them about discounts for fuel bills and council tax to ease their situation. Ruth has also supported the mum with information about her son’s rights to a nursery place, and helped her
Anna Bird
I’m always amazed at the strength of the parent carer community; they really do pull together to support each other
Anna Bird
understand more about accessing social care. The family has since been allocated a Social Worker and can now access direct payments and valuable respite support.
Ruth is proud of the di erence she helps to make, and explains: “Families whose child is in hospital for extended periods tell me they look forward to seeing me at the information stand, as they’re o en spending long periods on their own and like to see a familiar, friendly face.”
FELLOW PARENT CARERS
Continuity of support – so you don’t have to keep explaining your circumstances to new people all the time – is important for parent carers of disabled children. Most major towns and cities have a carers’ centre which provides face-to-face support, whether that’s via regular drop-in sessions, advocacy or even trips out – it’s an opportunity to make good friends with fellow unpaid carers who are going through similar experiences to you.
You might also meet parents through your child’s school,
at extracurricular activities or playgroups, or through local disability networks.
ONLINE FRIENDSHIP
Plenty of people also build a virtual village through online communities run by charities like Scope, which has thousands of people using its well moderated forums to discuss everything from Universal Credit to accessible days out. The connected community helps disabled people and parent carers make friends, share experiences, get advice and discuss what ma ers to them. Online groups like this give you space to vent and be listened to, and are especially valuable for those times when you need support at odd hours, or when a ending a local support group isn’t feasible.
Don’t underestimate the importance of professional help either, whether it’s a counsellor, therapist, social worker or even your child’s medical team. These professionals may be able to o er strategies to help you manage stress, work through feelings of isolation, and navigate the complexities of your child’s care, as well as linking you up with relevant organisations and groups that can help.
PULL TOGETHER
Anna Bird, Chief Executive at Contact, told Enable: “I’m always amazed at the strength of the parent carer community; they really do pull together to share advice and support each other. Building networks, se ing up support groups, being part of a forum – all for the greater good of their children.”
“Raising any child is challenging, but a disabled child can bring enormous pressure, so it really does take a communal e ort to help,” explains Anna. And, while it might take time to find the right mix of support, your village is out there, ready to help you and your child thrive.
Our team at Notaro Homes, have a wealth of experience and knowledge, so we understand what a critical time it is for the whole family when considering future care options.
We are always here to talk to you, offer advice and support you through the process.
We are a family run business and have been providing vital care and support to individuals across Somerset for nearly 40 years.
Cedar Lodge & The Limes Care Home, Hope Corner Lane, Taunton, Somerset, TA2 7PB
Immacolata House Dementia Nursing Care Home, Portway, Langport, Somerset, TA10 0NQ
FOLLOW THE SIGNS
This summer, videos of BSL interpreters embodying the energy, emotion, and artistry of Taylor Swift’s performances at her Eras tour were all over social media. Live signed coverage of the Olympics opening and closing ceremonies was available through the BBC, while music fans at Glastonbury enjoyed joyful signing from interpreters during performances by Shania Twain and Lil Nas X. We learn more about this valuable and empowering service
For many Deaf fans, attending a live performance used to be a frustrating experience –relying on friends, fellow concertgoers, vibrations and visual elements to engage with the music or get a feel for the narrative. But the growing presence of BSL interpreters is changing that, helping open up cultural experiences for Deaf people. There are around 151,000 BSL users in the UK – 87,000 of whom are Deaf – so it makes sense to offer inclusive performances and events.
HIGHLY SKILLED
BSL interpretation at live events is a specialised skill. In typical BSL interpretation, conversations or speeches are translated in real-time. But performance interpretation requires a deep understanding of the script or lyrics and the ability to convey their meaning, as well as the tone, rhythm, and emotion behind them. For a music concert, the interpreter often works with the artist and production team in advance to ensure they’re intimately familiar with the
setlist, the lyrics, and the artist’s style. The interpreter uses facial expressions, gestures and movement to convey mood, meaning and vibe, translating the auditory experience into an accessible, visual one.
In theatre, the interpreter needs to be able to follow fast-paced dialogue, different accents and onstage wordplay, while also capturing the characters’ emotions and intentions. The Royal Shakespeare Company (RSC) offers integrated BSL interpretation so, rather than
Clare Edwards in Tartuffe in 2018
watching an interpreter standing at the side of the stage while also keeping an eye on the actors, interpreters are integrated into the performance, wearing costume and moving around on stage with other characters.
A SPECIALISED LANGUAGE
Josefa Hunter MacKinnon, Creative Programme Developer for Access and Inclusion at the RSC told us: “We only use fully certified interpreters, which is really important because BSL is such a specialised language. There’s a very small pool of interpreters who are happy on stage and are brilliant at the performance element of it. Another element is the Shakespeare – we need very fearless, brave interpreters who are great at performing and aren’t afraid of getting to grips with the text.”
Josefa refers to both the language of Shakespeare and BSL as being “visually beautiful. When he writes, Shakespeare creates strong images in our heads,” enthuses Josefa. “And BSL is such a beautiful, visual language. Our audiences, even if they’re not BSL users, always say there’s more clarity with an integrated performance, even though they can’t understand what’s being signed.”
EMOTIONAL EXPERIENCE
In ten years of offering integrated performances at the world-famous Globe Theatre and other venues, Josefa revels in the audience feedback: “We get lots of people who get very emotional about seeing integrated BSL
Hearing audiences always prefer the BSL integration. It adds an extra layer of emotion Josefa, RSC
for the first time, seeing stories they’ve heard about played out in front of them.”
Providing access from the very beginning “doesn’t detract or make it a less valuable version of the production,” Josefa says. “Everybody in the auditorium is watching the BSL performance, it’s not something you can ignore,” explains Josefa. “Quite often you might hear people say ‘I don’t want to see a signed performance because the interpreter on the side is really distracting’. But the hearing audiences always prefer the BSL integration. It adds an extra layer of emotion. People tend to walk away feeling that they’ve seen a really special, enhanced version of the production.”
TAKING UP SPACE
No article on BSL interpretation at live performance events would be complete without a mention of the talented Deaf acting community, of course.
From Deafinitely Theatre (a producer of professional high quality theatre for
Deaf and hearing audiences) to Solar Bear Theatre Company (which works with Deaf and hearing actors, theatre makers, artists and young people), Deaf actors are taking up space on stages up and down the country, performing in Deaf-written and produced plays to captive audiences.
The Royal Conservatoire of Scotland has introduced a BA Performance for Deaf and hard of hearing actors. The degree is designed to train Deaf and hard of hearing people in how to perform or create work on stage and screen, and it’s the only course of its kind in Europe. There are BSL interpreters in every class, and graduates have been involved in a range of projects including curating the Edinburgh Deaf Festival and appearing in a Netflix series.
ACCESS FOR ALL
So how can music lovers and theatre fans access BSL interpreted performances? Many theatre venues list their signed performances on their websites. For larger events like pop concerts, venues will often have dedicated booking pages for specific concerts, enabling fans to book seating in the same location as the BSL interpreter. At Glastonbury, Deaf attendees can complete an access request prior to the event, to ensure they’re given information about how to access BSL interpreters for different stages. Meanwhile, the RSC lists its accessible performances on its website.
Providing BSL interpretation or integration at music and theatre events represents more than just creating access to entertainment. It’s about inclusion, respect, and the recognition that everyone deserves to enjoy the arts, sharing the collective experience of live performance and all the emotion, inspiration and sense of community it can create. It also challenges the notion that Deaf people are passive observers in a hearing world – instead empowering them to be active participants in cultural life.
Becky Barry in Hamlet in 2017
PUNCTURING THE WALL OF IMPOSSIBILITY
Actress and writer Linseigh Green has been “puncturing the wall of impossibility since birth”. Here, she shares her story
rom the moment I tasted air, I began to die. Two weeks later, I was diagnosed with necrotising enterocolitis (NEC), a rare, often fatal neonatal disease where part of the bowel ‘dies’. To save my life, part of my colon was surgically removed. My parents were told that, if I did survive, I’d never thrive academically. Other families were told NEC survivors’ life expectancy was 15. I’m now 27. But one can rarely lose part of an essential organ and expect to stay off the hook.
As a small child, I’d wake up screaming at the stabbing sensation in my stomach. At 16, this escalated until I shook violently and blacked out. I narrowly escaped emergency surgery.
This episode recurred for years. Each time, my life was at risk. Each time, the doctors would struggle to articulate what was happening or how to help. I’ve been rejected by entire gastroenterology departments due to a lack of research.
MAKING AN IMPACT
It turns out NEC has long-term complications. As the survival rate increases, so does the pile-up of orphan patients. By 19, I knew passivity wouldn’t save me. In the ensuing years, I spoke at conferences globally; devised the first known research project on long-term outcomes; advocated for patients before Congressional offices in the US; and appeared on broadcast news… All because I couldn’t get a doctor’s appointment.
For all the grief my body gave me, my brain was my champion. Until it, too, abandoned me.
During my Creative Writing
dissertation at Cambridge, I lost the ability to read and write. Two weeks after my graduation, I was diagnosed with functional neurological disorder, a brain signalling condition. My neurologist suspects it’s related to my traumatic birth, but we lack the research for certainty.
ACTING SAVED ME
I was encouraged to act as an experimental therapy in lieu of sustainable treatment. That’s because –inexplicably – I’m actually able to function normally onstage. This led me to getting an agent, then a role in a touring West End musical, where I covered the lead.
I cannot explain how it felt to be unable to speak, walk, and open my eyes in 2022 and then bare my soul to 2,000 audience members in 2023. Perhaps that’s why my belonging in theatre has been questioned by members of the industry.
But theatre is powered by a suspension of disbelief. So if we can believe in a green girl with magic, we can believe in a disabled girl who dangles from the threshold of impossibility, refusing to let go.
I’ve been rejected by entire gastroenterology departments due to a lack of research
Specialist Medical Travel Insurance
WHAT A PAIN
Living with chronic pain can be a real struggle. Editor Melissa Holmes finds out more about the challenges pain presents, while also learning more about how to cope
Before you judge a man, walk a mile in his shoes… So the saying goes. But how many people stop to think of that phrase when they see someone struggling to get coins out of their wallet, or having to search for a seat on a busy train? The person whose fingers are too painful to handle loose change, or the one who can’t stand up on public transport might be part of the 20 to 50% of adults in the UK who are living with chronic pain.
No one is immune from pain – even the rich and famous struggle with chronic pain, like musician and actor Lady Gaga who has fibromyalgia, and TV presenter Eamonn Holmes, whose mobility has been severely restricted by chronic back pain.
I myself have been living with ‘problem periods’ since I was 14. I was diagnosed with endometriosis at 28, which causes persistent pain all month long, plus flare ups at unexpected times which leave me stuck in bed, barely functioning… not to mention the mental health impact of the disease.
PAIN BELITTLED
My experience of waiting a long time for diagnosis is common with endometriosis, which a ects around
one in ten women and people assigned female at birth. The average wait for diagnosis is seven years. And, as with many pain conditions, medical trauma, gaslighting, and having your pain dismissed, diminished or beli led are recurring issues.
The unpredictability of how acutely the pain will strike, and when it will strike, are some of the worst things about living with chronic pain. Kyleigh Orlebar understands this all too well. She was diagnosed with psoriatic arthritis in 2014. “I got out of bed one morning with really bad pain in both wrists,” she explains. “I thought I must’ve slept in a bad position. But it never stopped hurting.”
INFLAMED JOINTS
Kyleigh went to her doctor, reporting persistent pain in her wrists and fingers. Via ultrasound, medics discovered every joint in Kyleigh’s fingers and thumbs was inflamed. “In a way, I was glad of the diagnosis,” she admits, “because there are medications that can help.”
With her feet and knees now a ected too, Kyleigh uses a combination of in-shoe orthotics, splints and tape to manage her pain, along with medication. “As soon as I was diagnosed, I was popped onto Methotrexate, which is a form of chemotherapy,” she says. In tablet form, it didn’t help: “I remember being so desperate, just in so much pain. So they gave me Methotrexate to inject into my side every week, as well as giving me a steroid injection. All of a sudden, it was like this cloud li ed.”
Kyleigh remained on Methotrexate for five years until a common side e ect – sickness – hit. She was forced to stop using the medication. “The sickness went away,” she says, “but of course the pain came back.”
She’s since tried a variety of medications, and has found that using ‘spoon theory’, along with her favourite
You may get a really bad day, but you have to remember ‘this too will pass’
Kyleigh
forms of self-care, has been really helpful in managing her pain. Spoon theory involves imagining that you start the day with a limited number of ‘spoons’ of physical and mental energy, which will get used up throughout the day. It’s about pacing yourself and knowing your limits – if someone else can lift the kettle to make you a brew, ask them to do it, rather than using up one of your spoons. Kyleigh explains: “You need to know when to rest. If you haven’t got someone around to cook for you on a bad day, prepare a flare-up cupboard – things you can easily cook and eat, like noodles in a pot, or crisps.
MENTALLY STRONG
Living with chronic pain (chronic generally being defined as acute,
regular pain lasting longer than three months) is tough. Frustration, anger, fatigue and insomnia are just some of the mental and physical side effects.
Kyleigh has a naturally sunny disposition, but on her lowest days – like when she was unable to walk her daughter to school: “I couldn’t even hold her hand,” she says – a hot shower and a metaphorical kick up the backside have helped. “It’s been about getting my mental state in a strong enough position to be able to fight any demons,” reveals Kyleigh. “To keep on finding the beauty in life; finding things to be excited about is probably the hardest battle of any diagnosis.”
Kyleigh, who runs her own business as an artist, has had to change her ways of working to accommodate her
shifting pain levels. She’s grateful for her family and husband, who’ll cook for her, bring heated blankets, and make her rest when she really needs to. She also has a “beautiful corner of Instagram” where her friendly followers check in on her frequently.
She told me: “Luckily with chronic pain, it’s never 100% every single day. You may get a really bad day, but you have got to remember – ‘this too will pass’.”
My new live-in PA is phenomenal, I couldn't be happier. I haven’t felt so supported in months if not years.
MSibley
Search by compatibility not just availability!
• PA Pool is an online introduction platform for Clients & PAs, with over 8,000 members UK-wide
• Search according to your needs and view profiles to find the perfect match
• Only pay a subscription fee when you wish to make contact
• PA Pool is a non-profit, user-led organisation
So whether you’re looking to recruit a PA or find Clients to work for, join today. Enable readers get a FREE month’s subscription! Visit www.papool.co.uk/freetrial or scan the QR code
Join today & get a month’s free trial!
Tim Rushby-Smith
Originally from London, writer, artist and paraplegic
Tim Rushby-Smith is based in Australia. He is the author of two books: Looking Up and Beyond the Break. Follow Tim on X @trushbys
BETTER WORLD? FOR WHOM?
Enable columnist Tim Rushby-Smith ends up grounded after a recent flight
Ihave flown as a wheelchair user for 18 years now, and I’ve always arrived at my destination with my wheelchair present and undamaged. I know this is not everyone’s experience, having been on flights with my wheelchair basketball team where other wheelchairs have sustained damage in transit.
END OF THE LINE
My winning streak came to an abrupt end when I returned to Australia with British Airways following a recent trip to the UK, whereupon I discovered both push-rims on my wheelchair were buckled and dented. At first, I was impressed; this would require either huge crushing force, or for something very heavy to be dropped from a significant height.
OK, impressed is too strong, but as I lodged my complaint at the baggage desk in the airport, I did so feeling safe in the knowledge that the airline would of course respond swiftly to compensate me for the damage. The first wobble to my confidence happened almost immediately when the baggage handler showed me
the tag on the back of my chair, which stated that it was being shipped at my own risk, with my name written in someone else’s hand. This had been attached without my knowledge in Singapore, when I was told that the staff member was simply replacing the baggage tag.
SORRY FOR THE DELAY
I sent my claim to the airline and immediately received an automated response. A week later, I received another. And another. I’ve now amassed eight automated responses in the two months that have since passed; each one with slightly
Mobility equipment is special cargo. My wheelchair isn’t like a bicycle
different wording. If you need to write ‘sorry for the delay’ eight different ways, you should be devoting more resources to dealing with the issue…
It’s impossible to find a telephone number to call at British Airways. Presumably they’re all busy making the ‘Better World’ they keep harping on about in their new sustainability campaign (I also asked the airline for a response before filing this article, but none was forthcoming).
Mobility equipment is a very special kind of cargo. My wheelchair isn’t like a bicycle. Even a pushchair doesn’t come close, as I have no giant human to carry me off the flight (I can dream, though). A broken wheelchair is like broken legs.
With 16% of air passengers having a disability, and airlines pitching for our business, some things have improved. But our mobility equipment is still not afforded the level of care we rightfully expect. And taking two months to respond after inflicting such damage is inexcusable. It wouldn’t happen in a Better World.
Revolutionizing Crutches and Walking Sticks
Steets Crutch Parking Aid prevents crutches and walking sticks from falling over. Lightweight, compact, and easy to attach, it enhances safety and convenience. Designed with medical professionals, it aids rehabilitation by reducing fall risks. Made from recycled plastic, it meets high safety standards. Recognized for its innovation, Steets supports independence and well-being.
For users, clinicians or distributors contact us at 03303 202497, info@rebotics.co.uk, or visit www.rebotics.co.uk for more information.
By 2025, it’s estimated that more than a million people will be living with dementia in the UK. The memoryimpairing disability has an impact on the whole family, including children. We spoke to the author of ‘My Grandma has Dementia’ and Dementia UK to find out more about how to support young people who have a relative with dementia
When Alex Winstanley was a child, his grandma was diagnosed with dementia. He watched his mum become a full-time carer for her, and struggled to come to terms with what was happening. “Children see the people they love change overnight, and it’s hard for them to understand because it’s a disease they can’t see,” explains Hannah Gardner, a Consultant Admiral Nurse for Dementia UK.
NORMALISING DEMENTIA
“All of a sudden, grandpa or grandma can’t take them to the park anymore,” continues Hannah. “Physically, the person looks the same, but they’re
being controlled by a really scary disease in their brain. It might a ect how they behave or act. It can feel very sudden and confusing for children.”
Dementia is an umbrella term for loss of memory and other thinking abilities, which becomes severe enough to interfere or cause di culty with daily life. It happens when brain cells get damaged and can’t communicate properly with one another. “Alzheimer’s is the most common form, but it’s not the only type. My grandma had mixed dementia,” shares Alex, who wrote a children’s book about the disease. It helped him cope with the loss of his grandma, who died 10 years a er her diagnosis.
“Her dementia never went away, but neither did her smile. It’s important for children to understand that people with dementia can still be happy,” explains Alex. “I tried to capture that in my book and emphasise that even though a family member might have dementia, and we can’t change that, they still love you very much.”
Hannah holds a similar view. “It’s di cult to explain dementia to children because you want to be honest, but that can be quite frightening for a child. It isn’t like a broken arm that they can put a cast on, because it’s hidden inside the brain. But just because someone’s got dementia doesn’t mean you don’t ma er to them anymore. They might get muddled up or forget your name, but they still know you’re important.”
Just because someone’s got dementia doesn’t mean you don’t matter to them anymore
Hannah Gardner, Dementia
UK
Alex Winstanley
TRANSPARENCY
Dementia is a complex disease that a ects the whole family. When speaking to children about the condition, it can be helpful to be open and honest about your worries. “Children are very observant, and they’ll have picked up on any changes before you speak to them. It can be di cult because you don’t want to scare them or cause more fear or upset, but they need to have reliable information,” emphasises Hannah. “I always recommend taking the time to sit down as a family to find out about dementia together. It gives children the opportunity to express their concerns in a safe space.”
There are tools and online resources you can use to support the conversation. Alex says that books and videos are especially helpful because they allow the child to visualise the condition: “It lets children see for themselves that things will be okay. It might not give them all the answers, but it shows them that, even though there will be tough times ahead, there will still be great times too.”
CREATING SAFE SPACES
But he reminds us that every child will react to a diagnosis di erently. “The main thing is to try and reduce their anxiety. Dementia is lifelong, and that can be a scary thought. At least it was for me,” admits Alex.
Two siblings in the same family could react very di erently to the news, depending on how they regulate their
emotions and the relationship they have with the diagnosed person. “Some will want to talk about it, and others won’t,” says Hannah, “but it’s important to look out for changes in their behaviour that could indicate they’re struggling.”
“It might be hard for them to put into words what they’re going through. Spending time with them away from everything that’s going on will give them space to sort through their feelings.”
MYTHS AND FEARS
They may be fearful at first, which is totally normal. They might hear rumours about dementia at school,
and it can be hard for children to sort the facts from the myths.
“Some children think dementia is infectious or that they’ll automatically develop it as an adult because their gran or grandpa has it,” reveals Alex. “There’s also a lot of negativity in the media, which doesn’t help. Especially around care homes in TV shows – that really frightened me as a child. But my grandma thrived in her care home. She was safe, happy and well looked a er.”
Hannah says it’s not just children scaring themselves silly; adults are in the dark about dementia too. Whilst she acknowledges that it’s not a simple condition to understand, she thinks that normalising the conversation around dementia and improving awareness is the best way forward: “Dementia a ects the whole family, but we don’t o en speak about how it a ects children,” she admits. “Recognising how it a ects young people is important, because they o en feel isolated.”
“We need to speak to them about their experiences and take the time to understand how they’re feeling,” she urges, “so that we can improve awareness around the challenges and responsibilities of young carers.”
Drawing helps children express their feelings safely
Children with Alex’s books
Rhiannon Louden
Originally from Canada and now based in Glasgow, mum of two Rhiannon Louden is a freelance photographer specialising in weddings, elopements and proposals. In spring 2024, she received the news that her youngest child has Rett Syndrome.
SHARING THE NEWS
Rhiannon Louden explains how she shared the news of her daughter’s diagnosis of a life-limiting condition – news no one wanted to hear
We had our diagnosis confirmed. The people closest to us knew we had the meeting that day: they’d been with us from our first “We’re worried” moments to “We’re seeing a developmental paediatrician” to “We’re testing for Rett Syndrome.”
We had explained it’s a rare, neurodevelopmental disorder that causes a progressive loss of motor skills and language with severe health implications… but that it (hopefully) might not be that.
The people who love us didn’t want it to be that either. They assured us that
There are things people can say or do to make it worse… dismissive comments or “Well, we will love them anyway”
our odds were good, with only a one in 10,000 chance. They were optimistic, because the other option felt too hard to consider.
But now our worst case scenario was a reality. It was the severe, scary, devastating thing. And we had to let them know – while at the same time reeling from the news ourselves.
Telling our older daughter was the most difficult. Her reaction was raw and honest – an expression of grief she was able to release in the way that only a child can.
We couldn’t bring ourselves to share the news with anyone else in person, so we wrote a message instead, outlining the results of the meeting and what would happen next.
WHAT TO SAY
No one knows what to say to a parent who’s just had their child’s future pulled out from under them.
There’s nothing anyone can say to make it better. No one wants this for their child, their family, or themselves. But there are things people can say or do to make it worse though. Dismissive comments or reasoning or “Well, we will love them anyway.”
DISAPPEARING FRIENDS
Or they can disappear into the background. We were surprised (and hurt) by how quickly this happened. I imagine, over time, more and more friends will do the same. It’s a lot: the pain, the empathy, the harsh realities. Much easier to distance yourself.
On the other side of that though, we’re surrounded by an amazing group of people who’ve done the opposite: banded together for us. We know they’ll continue to do so, with words of support and strength, offers of help, check-ins, cards and thoughtful gifts. Friendly, open ears. Tears wiped away.
They told us they were in it for the long haul, that we could count on them, that they couldn’t understand what we were going through but they would be right there beside us, and Poppy.
How lucky we are to have these kinds of people in our lives. Our village.
FOR MORE INFORMATION
Keep up to date with Rhiannon’s experience as a busy mum juggling business and a child with additional support needs via instagram.com/smallfishbrandco
Rhiannon and Poppy
OPEN DOORS
Designed exclusively for disabled individuals and carers
Fits in your wallet - no more bulky documents
Widely accepted nationwide as proof of eligibility for discounts, priority access and more
Advanced security features: hologram and special overlay
Same-day application decision
Emergency contact QR code
Plus premium colourful lanyards exclusively for cardholders
Better late than never
ADHD has only been diagnosable in adults since 2008 and is most commonly diagnosed in young boys. Like many girls, Leanne Maskell and Ellie Middleton were both diagnosed during their twenties, years a er they le school. Kate Stevenson spoke to them about neurodivergence, their lives and everything in between
Being easily distracted, struggling to focus, constantly fidgeting, always losing things… Just some of the symptoms of A ention
Deficit Hyperactivity Disorder (ADHD). Increasing numbers of adults are being diagnosed with ADHD as awareness of the neurodivergent condition increases. An adult may be diagnosed if they have five or more of the symptoms listed in the criteria for children, and symptoms should have
a moderate e ect on the adult’s dayto-day life and relationships.
ADHD coach, professional speaker and author Leanne Maskell got her diagnosis when she was 25 because she was struggling with managing her relationships and finding stability in her life.
“It came about because I was going to kill myself. My life completely spiralled out of control, and I felt so lost,” reveals Leanne. “I’m like a new person now. The di erence since I got my diagnosis is astronomical.”
OUTDATED SYSTEM
Although life is very di erent now for Leanne, the period prior to her diagnosis was dark and lonely. One in four women with ADHD commit suicide because they feel disconnected from society: “We go through life feeling like we’re too much, too hormonal or too emotional,” says Leanne. “But, actually, we have a developmental delay and struggle with our executive functioning skills, which includes regulating our emotions.”
The history of ADHD goes back to the 1700s, and Leanne believes that the diagnostic system is just as outdated. It can be di cult for adult women to get their life-changing diagnoses because criteria are based on hyperactive and adolescent boys.
“Hyperactive li le boys run around. I wasn’t like that,” she told us. “I
would always fall asleep in class, be daydreaming out the window or reading under the table.”
MISJUDGED AND MISUNDERSTOOD
Everyone with ADHD manages their daily life di erently, which is why Leanne says it’s “highly situational”. Some doctors told her she was “fine” because she had a law degree and didn’t fit the criteria for ADHD but, at home, it was a di erent story.
“I can write four books, but I can’t cook myself a meal,” reveals Leanne. “I find it very hard to even clean my house. I’ve managed to create strategies that work for me, but I do still struggle.”
THE NEUROTYPICAL WORLD
Like Leanne, activist, speaker and author Ellie Middleton spent most of her life feeling misunderstood until she was diagnosed with autism and ADHD. “At first it felt like everything was going to be blue skies and rainbows,” discloses Ellie. “But, as time passes, you realise that how you’ve been functioning hasn’t been
I’m like a new person now. The di erence since I got my diagnosis is astronomical
Leanne
Leanne
good for you, and you’ll need to make some changes. There’s still a light at the end of the tunnel, but I’ve realised it takes a lot more work.”
Naturally, not every day is perfect for Ellie. With hundreds of thousands of followers on her social media platforms, she might seem like she has it all together online. But she says: “There are still days when I get so frustrated that my brain doesn’t work how I want it to. I know all the things I need to do. I know what will make me feel be er, but that doesn’t mean I can do it. One week, I can be on top of the world; the next, I’m back to square one.”
STRUGGLING HEALTH SERVICE
There’s been a lot of recent media a ention surrounding ADHD. In some parts of the UK, there’s an eight year backlog for adult assessments and, since 2020, the ADHD Foundation has seen a 400% increase in adults seeking a diagnosis. NHS England is also launching a review of its services. Ellie encounters a number of neurodivergent people in her life due to her job. Even when she’s at the hairdresser, someone will tell her that “their auntie or sister is in the process of ge ing a diagnosis.”
October is ADHD Awareness Month.
She believes social media has helped more people understand ADHD. “There are a lot more women, trans people, queer people, people of colour, people outside of that young white cis boy, who are sharing their experiences now,” divulges Ellie. “I think that’s helped more people to get diagnosed.”
SPEAK UP, SPEAK OUT
Celebrities have also been speaking openly about their late diagnoses. These include Lilly Allen, Paris Hilton, Olivia Atwood, Cara Delevingne, Nadia Sawalha, Sue Perkins… and the list continues to grow.
Media a ention has also helped society to be er understand the condition, but both Ellie and Leanne feel there’s still a long way to go. A er all, the world wasn’t built for neurodivergent people and, as Leanne reminds me, ADHD is still classed as a “disorder”.
“I find that I can tell someone I’m autistic and have ADHD, and they’ll have really good intentions of
If you think you might have ADHD or can relate to any of the information in this article, visit adhdfoundation.org.uk or adhdadult.uk for more guidance and support.
supporting me, but they won’t know how to,” explains Ellie. “They don’t actually know what I’m going to need or the accommodations they need to make.”
Ellie believes the best way to ensure you get support is to communicate your needs with your friends, family, and colleagues. “It can feel like you’re nagging or being a diva, but it’s important to advocate for yourself,” she stresses.
“I hope that – with enough education – people will begin to realise what neurodivergent people need without us constantly reminding them.”
There are still days when I get so frustrated that my brain doesn’t work how I want it to Ellie
FOR MORE INFORMATION
Ellie’s new book, How to Be You, is released on 5 September. Follow her via instagram.com/ elliemidds
Visit Leanne’s website at adhdworks.info for more information on ADHD coaching and to buy her guides.
Ellie
Rose Cottage
ALLERGY AWARE
With allergies affecting up to 41 million people in the UK, medical emergencies relating to anaphylaxis are rarely out of the news. Anaphylaxis Awareness Week takes place from 1 to 6 October; editor Melissa Holmes finds out more
From common conditions like hayfever, asthma and eczema, to food, venom and even drug allergies... Allergies affect many of us. A recent survey by the Food Standards Agency found that around 6% of adults have a confirmed food allergy.
You only find out you have an allergy when you have an allergic reaction. Symptoms can include a swollen tongue, difficulty breathing, and feeling dizzy or fainting. Some allergens cause anaphylaxis – a severe reaction – and even death.
I’ll never forget my first experience of anaphylaxis. I decided to try a new recipe – grilled mushrooms stuffed with tahini and tomatoes. Tahini is a paste made from sesame seeds – I’d eaten those all my life on burger buns and in sushi. But within hours, I was raw and itchy, my lower face and lips massively swollen. The following day, my GP prescribed steroids.
LIFESAVING
After my next reaction, I was prescribed AAIs (Adrenaline AutoInjectors). These easy-use injectors contain adrenaline which decreases the body’s allergic reaction. I always
carry two AAIs and – like thousands of other people – reading labels, keeping up to date with food recalls, and checking allergy information on menus is now part of my everyday life.
With food allergies on the rise and between 5 and 8% of children affected, schools have had to become allergy aware, with many banning nuts from school grounds. Schools should be kept informed of an allergic child’s needs and, if prescribed, in-date injectors should always be kept with the child, with all staff aware of anaphylaxis symptoms so they can act quickly to potentially save the child’s life in the event of a reaction.
ALLERGY = DISABILITY?
Depending on how your allergy impacts your life, it could be classed as a disability, which grants you certain rights and protections in the workplace, including time off for allergy-related appointments and reasonable adjustments such as separate food storage areas, or barrier protection for skin conditions.
When it comes to managing allergies if you’re a disabled person, it’s vital to ensure your caregivers are aware of your allergies, and they know the
Within hours, I was raw and itchy, my lower face and lips massively swollen
location of your medication and how to administer it. Allergy identification jewellery or an information card carried in your wallet can also be helpful tools. Allergies, especially those severe enough to cause anaphylaxis, are more than just an inconvenience. They can be life-threatening and have a deep impact on daily living. Whether you’re managing your own allergies or supporting someone who has allergies, staying informed, prepared, and vigilant can mean the difference between life and death.
Wheelchair accessible self-catering log cabins in the Peak District countryside
Mobile hoist Specialist equipment
Roll in wet room shower
Dogs welcome
Off-road wheelchair hire
hoegrangeholidays co uk tel: 01629 540262
Chipping Campden’s history in stone is the Cotswolds’ hidden gem - an idyllic centre for easy access to the local towns and villages, Stratford, Cheltenham, Gloucester, Oxford, Warwick & Worcester, etc.
George Barn is within no more than a 7 to 8 minute walk to the curved High Street, its inns, restaurants, shops & attractions.
Situated at Thurston Manor Leisure Park near the beautiful harbour town of Dunbar, East Lothian.
Accessible Self Catering
UNDERSTANDING STROKE A Survivor’s Story
Strokes affect 100,000 people each year in the UK alone, and they often have a life-changing impact. Far from being an ‘old person’s problem’, they can strike any age group. We find out more
I enable health
n the UK, someone has a stroke every five minutes. They happen when blood supply to the brain is cut o – o en by a blood clot or haemorrhage. Strokes can strike anyone, of any age, at any time. They can be fatal, and survivors are o en le with long-term, life-changing e ects which can be disabling.
Leah Ambrose was 36 when she had a stroke. An “excruciating” headache and vomiting were her first symptoms, which her GP put down to the fact she’d just returned from a threemonth trip around Southeast Asia. Leah woke up the next morning: “I was completely paralysed, couldn’t move a bone in my body,” she explains. Her parents called an ambulance, by which point she’d lost the ability to speak. “I remember trying to talk and these slurred sounds came out,” reveals Leah. “My right arm started flailing around of its own accord. I couldn’t make it stop.”
A er tests and brain scans, it became clear that Leah had experienced a stroke. “The immediate a ermath was fear,” reveals Leah. “I was really scared – I didn’t understand what had happened.”
EVERY TWINGE
The impact of Leah’s stroke was “scary – I was concerned about every twinge in my body,” she says. “My movement and speech came back relatively soon, but I had a dropped right side.” Leah was accepted at a specialist rehab centre for people with acquired brain injury, where she received physiotherapy, counselling
Reducing stress levels can help cut your risk of having a stroke
and occupational therapy.
11 years on, she’s still a ected by the impact of her stroke. “Emotionally, I probably only started to feel like myself again in more recent years,” she reveals. She’s been able to run a half marathon, yet is still a ected by dystonia, where her foot drops and drags, as well as weakness down one side of her body. Leah is also working full-time, but struggles with storing and recalling information.
SUPPORT
The support from friends, family and charities – including the Stroke Association and Di erent Strokes –has made a huge di erence to Leah. “My best friend called me every day for a month a er the stroke, to make sure I was ok, so I wasn’t isolated,” she says. “And the organisations out there are so useful – for example, somebody came to help me apply for benefits because I couldn’t work.”
Leah is now an ambassador for Di erent Strokes, and told us that the charity’s online support group has been fundamental in helping her feel less alone. “I would put something on the online group and so many people would answer my question or say ‘I totally get you, I feel this so much’,” she admits.
Now 48, Leah has returned to her previous job as an executive assistant. It took a long time to build up to returning to work, and she says: “Coming back to work since the stroke is a very di erent ball game. The way the memory stores information, and my ability to recall things quickly is compromised. Work is much more challenging now.”
REDUCE THE RISK
There are certain factors that increase your risk of having a stroke, like high blood pressure, high cholesterol
or diabetes. So eating a good diet, avoiding alcohol, stopping smoking, watching your weight, and reducing stress levels can help cut your risk of having a stroke.
For Leah, there was a set of specific circumstances which increased her risk of blood clots – she’d just been on a long-haul flight (which can increase the risk of blood clots) back from a hot country (dehydration can thicken the blood and increases the risk of clots), plus she was a smoker and was taking the contraceptive pill. “I was a classic binge drinker,” she explains, “drinking loads of Prosecco and cocktails. Nobody expects to have a stroke at that age. If you’d have asked me at 36 what I was at risk of, I would have said cancer.”
“If you’re the person it’s happened to, be kind to yourself,” she advises. “I was desperately trying to get my life back. There’s a sense of impatience – ‘why do I feel like this, why can’t I stop crying?’. You’ve got to be kind to yourself.”
Know the signs
The main symptoms of a stroke can be remembered by using the word FAST.
FACE: the person’s face or features may have dropped on one side
ARMS: weakness or numbness in one arm means the person may not be able to li both arms
SPEECH: they may have trouble speaking or understanding what you’re saying
TIME: it’s time to dial 999 straight away if you notice any of these symptoms
There can be other symptoms, like vomiting, dizziness, sudden paralysis (especially down one side of the body), and confusion. Time is of the essence – quick treatment can help limit damage to the brain.
Leah
Samantha Renke
Samantha is a broadcaster, actress, disability activist and the author of ‘You Are the Best Thing Since Sliced Bread’. Follow Samantha on Instagram @samantharenke
BODILY AUTONOMY: MY TAKE
Enable columnist
Samantha Renke
on the importance of dignity and respect when it comes to bodily autonomy
Ihave been thinking a lot about my body recently –more specifically, my bodily autonomy.
Bodily autonomy is a fancy way of saying that my body is my own. I have complete power and agency over it. Bodily autonomy is a human right yet, as a Disabled woman, I often feel like my autonomy wavers.
Born with brittle bone condition, the sporadic nature of bone fractures leaves me feeling like my body has a mind of its own. Seldom in the driving seat, I’m just a passenger, struggling to put my seatbelt on, hanging on for dear life and hoping for the best.
One area I’m still working on is bodily autonomy in a medical setting
DISABLING WORLD
As a manual wheelchair user in a disabling world, this often means others need to push me. I have to hand over my autonomy, trusting that my ‘driver’ has my best interests at heart.
Over the years, I’ve learned to regain my autonomy in these moments by speaking up – telling people how it feels to have someone push my chair, and what works for me and what doesn’t. I also take self-care days and have talking therapy, plus my powerchair means I need less hands-on support.
One area I’m still working on though is bodily autonomy in a medical setting. I recently had leg surgery; a procedure that should’ve happened a few years ago, but I didn’t see eye-to-eye with my then consultant. Were they bad at their job? Absolutely not, but that doesn’t mean they know what’s best for me and my body.
Healthcare professionals are remarkable humans, but we know our bodies best. This can often be forgotten, and Disabled people can lose autonomy in this infantilising infrastructure.
SHOP AROUND
Patient / doctor relations should always take a holistic approach. And I didn’t feel heard or respected, so I shopped around. I contacted my old specialist and moved hospitals. This took time and paperwork – I appreciate that not everyone has that privilege.
Once I was being seen by a different specialist, I continued to speak up. I challenged in-person appointments that could easily be done over the phone. This meant less time and money spent, and also that I didn’t feel rushed.
The procedure had to respect my own circumstances and not follow the tired narrative that sees Disabled and chronically ill people as individuals with nothing better to do than to wait around for operations.
We have rich, vibrant lives that need to be as undisturbed as possible. We need to feel safe and secure in aftercare and support. We also need our voices to be heard and to have our dignity upheld.
7+
ACCESS PERFORMANCES THIS CHRISTMAS AND NEW YEAR
We are a child-friendly, wheelchair-accessible venue. Check our website for a range of access performances including relaxed, captioned, audio described and BSL.
11 Dec, 11am BSL interpreted
13 Dec, 11am Relaxed
15 Dec, 2pm BSL interpreted, Relaxed
18 Dec, 10.30am Audio Described
Ages 2-5
10 Dec, 11am Relaxed
14 Dec, 10am Relaxed
9-13
12 Feb, 10.30am Relaxed
13 Feb, 10.30am Captioned
15 Feb, 1pm BSL interpreted, Relaxed
16 Feb, 1pm Captioned
SWEET DREAMS?
We all need sleep but, for many of us, it can be hard to come by. Not getting enough sleep can have a serious impact on your mental health. Editor Melissa Holmes finds out more
Eight hours of blissful, uninterrupted sleep is the gold standard for adults, with experts saying that eight hours of sleep each night helps to reduce stress, lets us think more clearly, lowers the risk of serious health problems like heart disease, stroke and dementia, and helps improve the body’s ability to heal, as well as boosting our immune system.
THE IMPACT OF POOR SLEEP
What’s more, sleep and mental wellness go hand in hand. Chronic insufficient sleep can lead to depression and anxiety, while inability to sleep and feeling tired all the time can be part of living with depression and other mental health problems. Lack of sleep can reduce your ability to regulate your emotions, and lead to increased irritability or impaired cognition, such as issues with brain fog, concentration and memory.
But getting a decent night’s sleep can be a challenge when you’re disabled. According to US research, 40% of disabled individuals experience long-term difficulties with sleep, including insomnia, sleep apnoea, drowsiness, and narcolepsy (falling asleep suddenly during the day).
People with chronic conditions like spinal cord injury, MS, Parkinson’s and traumatic brain injury are three times more likely to have sleep problems than the general population.
For neurodivergent people, poor sleep can make symptoms worse. Those with ADHD may experience heightened impulsivity when sleep-
deprived, while autistic people might find sensory triggers and social interactions more challenging if they’re not well rested.
Frustratingly, lots of medications that are used to treat issues many disabled people face – like muscle spasms, depression and chronic pain (and even the sedatives used for poor sleep) – can disrupt sleep patterns and lead to additional problems with winding down and staying asleep. Then of course, discomfort and pain themselves, along with anxiety and the physical and mental symptoms of your actual disability add an extra layer of complexity.
CAN’T SWITCH OFF
Jane, 49, has had sleep problems for years. From struggling with her mental health while at university, to a diagnosis of ME and recurrent health problems in more recent years, she has always had difficulties with switching off at night. “I regularly have to take steroids, which can cause insomnia,” she reveals. “I lie awake for hours, my brain turning, unable to rest my body and mind.” Jane knows lack of sleep has an impact on her mental health, and says: “I’ve been on antidepressants for most of my adult life. I know when I don’t get enough sleep my mental health declines even more. I feel tired all the time, and it feels like that has a constant effect on my immune system and my body’s ability to fight off infections. It’s a vicious cycle.”
NO EASY FIX
So what’s the solution? As with any issue that affects everyone differently,
the approach must be flexible and tailored to the individual’s needs and abilities. In his book ‘The Four Pillar Plan’, Dr Rangan Chatterjee offers four main tips which will improve sleep for most people. These are: no tech 90 – switching off tech (which means eliminating melatonin-reducing blue light, as well as sensory and emotional stimulation which can keep you awake) 90 minutes before you go to
When I don’t get enough sleep my mental health declines which has an effect on my immune system Jane
bed; embracing morning light (going outside and exposing yourself to natural daylight, even in the depths of winter, helps your body set its circadian rhythm – your natural body clock); limiting caffeine to before noon only; and creating a relaxing routine you can repeat every night (like dimming lights, taking a bath, and having a warm drink to prepare your body for sleep).
Tips like these are often referred to as practising good sleep hygiene, which can help improve sleep for most people. Good sleep hygiene can also involve making changes to optimise your physical environment, like using blackout blinds, maintaining a cool room temperature where appropriate, and ensuring the bed and surrounding furnishings are suitable, accessible and comfortable. The impact of noisy
medical equipment can be reduced through using high quality earplugs or installing sound-deadening panels, while using a meditation app, like Insight Timer, through headphones or via a speaker can help quiet your mind and prepare your body for sleep.
For many disabled people, effectively managing pain and discomfort will really help to aid sleep. This might mean using adaptive pillows or mattresses, practicing gentle stretches before bed, or taking prescribed pain medications under your doctor’s guidance. If your medication is causing problems with sleep, have a chat with your GP, consultant or pain team about adjusting dosages, switching medications, or exploring alternative treatments that don’t interfere with sleep. Sometimes, sleep issues need
professional intervention, so you may need to consult a sleep specialist, psychologist, or counsellor.
Improving your sleep – as challenging as that can be when you’re disabled – can really help improve your wellbeing and mental health. It might take time to achieve better sleep, but the benefits will be worth it.
Scope’s Sleep Right podcast can be found on all major podcasting platforms. Just search ‘Sleep Right’
The Sleep Charity thesleepcharity.org.uk
Lightweight Mobility & Seating
Main distributors
•Dietz Mobility
•Karma Mobility
•Ki Mobility
•Otto Bock
•Spex Seating
•Triride
•Tomcat Trikes
•Permobil
• Rehasense
•Quickie
We are saving lives
Feisty, brave, funny, determined, dedicated. Just some of the words that describe Cor Hutton, the quadruple amputee who set up Finding Your Feet, a charity dedicated to supporting amputees in Scotland. Editor Melissa Holmes learns more
For the past ten years, Finding Your Feet has literally been saving lives. “One of the physios at WestMARC, a wheelchair and prosthetics centre, wanted to talk to me about a thesis for her PhD one day,” explains Cor. “She’d written it on the life expectancy of vascular amputees following amputation. And she’d discovered that, in the two years of doing her study, half of them were gone. They’d had no will to live,” she reflects. “She was so excited to talk to me because, as she saw it, we were solving that problem. We were saving lives.”
NO ANSWERS
Cor set up Finding Your Feet after having her hands and feet amputated due to sepsis in 2013. “I couldn’t get any answers,” Cor states. “Nobody could tell me what life was going to be like for me. You’re just feeling utterly useless in hospital, thinking ‘what does quadruple amputation mean you can do or be?’”
Cor’s family suggested she “fill in the blanks”, knowing that setting up a
peer support community would give her a sense of purpose. “There was obviously a real need for it. I love to say it grew arms and legs,” she laughs. “It snowballed.”
Finding Your Feet now runs 70 clubs a month across Scotland, from coffee mornings and peer meetups to gym sessions and archery tasters. Cor – who was the first Scot to receive a double hand transplant – loves a physical challenge, and says “There are lots of physical things to try, but if you want to sit, have a coffee and chat instead, that’s totally fine.”
GET UP AND GO
Finding Your Feet supports amputees of any age and background in Scotland, as well as their families and friends. With everything from employment help, travel tips, peer support and counselling on offer, the charity serves hundreds of ‘Troopers’. Cor reveals that, when she first started out, she discovered that helping other people made her feel better. “Now I realise what that does for your own sense of worth, when somebody else is relying on you,” she says. “You’ll get up and
There was a real need for it – I love to say the charity grew arms and legs!
you’ll go, even when you don’t feel like it. That’s what this can do for you: if you’re a peer supporter with the charity, then you’ll be helping other people, and that will help you.”
Cor’s proudest moments have been seeing Troopers not returning for support. “It’s success when they don’t feel the need to come back because they’re feeling like themselves again,” she smiles. “It’s the small things that make it – like people taking up a new hobby, or friendships that have been made. You’re making such a big difference in such a small way.”
Cor has a lot to be proud of: “If you’re giving people the will to live, then that’s saving lives,” she realises.
Cor with young amputee Keeley
Trying out yoga
Access Performances
Audio Described & Touch Tour
Sat 21 Dec, 2.15pm and Thu 2 Jan, 7.30pm
British Sign Language Interpreted Fri 13 Dec, 7.30pm
Captioned Sat 14 Dec, 2.15pm and Thu 19 Dec, 7.30pm
Relaxed Fri 3 Jan, 2.15pm
Dementia Friendly Wed 18 Dec, 2.15pm
Plan for their future
We learn more about how Mencap’s Wills and Trusts service can help you prepare for the future
No one wants to think about what will happen to our loved ones when we pass away. But for parents of children with support needs, planning for the future is vital.
“Thinking about what will happen to my children a er I’m no longer here caused me so much anxiety, I couldn’t cope with it,” explains Sophia, a mum of two children who both have severe learning disabilities. A friend mentioned Mencap’s Wills and Trusts service, suggesting Sophia take part in a webinar to learn more about the options available.
“It breaks my heart to think that I’ll leave motherhood without a plan in place,” admits Sophia. “That’s what drove me to find out about wills and trusts, and to seek the information from Mencap.”
IN-DEPTH KNOWLEDGE
During the webinars, which are free of charge and are hosted online regularly by Mencap, participants gain in-depth knowledge about wills and trusts. They take part in a Q&A a er the webinar
with a specialist legal professional, and learn more about the process of se ing up wills and trusts, the legalities, and the steps families and carers need to take to secure their children’s futures.
Sophia learned a lot: “I had absolutely no idea there’s specific legislation around wills and trusts, and that if you don’t do things in a certain way, your child could lose benefits,” she admits. “I also had no knowledge about how other people’s wills would a ect mine.”
A er the webinar, Sophia arranged a chat with a solicitor. She and her husband have begun the process of creating trusts – one for each of their children – that will provide for their wellbeing in future.
“The webinar covers everything. Even down to pu ing things in the plan that you know your children love, like going to the cinema or fairground.”
GET IT ON PAPER
Sophia says she feels a duty to tell other parents and carers that the Mencap
We all want the best future for our children when we’re no longer here
webinars exist. “If you haven’t got a plan in place, it could really jeopardise your child’s future and make them even more vulnerable,” she says. “If you’ve got a plan, it’s got to be on paper, it can’t stay in your heart. Have the courage to do it.”
“We don’t know what’s ahead,” Sophia explains. “We don’t know what will happen tomorrow or next week. And, ultimately, what we all want is the very best future for our children when we are no longer here.”
Sophia with her children Leon (6) and Zoe (7)
Do you struggle to get online?
This is called digital exclusion.
At Audit Scotland we carry out work to check whether public money is being used well and meets the needs of Scotland’s people.
We looked at how well the public sector in Scotland is tackling digital exclusion and what more it can do.
We heard from people who have experience of being excluded. We found that not enough is being done to make sure people can get online.
All public bodies have a role to play – they need to support and involve people in making sure they can access the services they need.
15% of Scotland’s adult population lack basic digital skills
9% of Scottish households have no access to the internet
51% of people in the UK who do not access the internet at home or elsewhere report a disability
You can read our report and easy read version at www.audit.scot or call 0131 625 1500 for paper format.
FOR RICHER, FOR POORER
Moving in together or getting married are among the biggest decisions any couple can make. These joyful, momentous milestones should be celebrated. But, for many disabled people, deciding to cohabit or marry can have a challenging impact on finances
If you’re reliant on benefits as a source of income, it’s wise to learn more about how making a big decision like moving in together or getting married can affect your financial situation.
The benefits system can be confusing, so it’s no wonder that some people are unclear on what will happen to their benefits if they choose to cohabit.
Turn2Us is a national charity offering information and practical support to people facing financial insecurity. They told us: “We recognise that navigating the complexities of the benefits system when moving in together or getting married can be very challenging. Understanding the differences between means-tested benefits and non-meanstested benefits is crucial to grasping the potential impact on your financial situation.”
OVER THE THRESHOLD
Disability benefits like Personal Independence Payment, Disability Living Allowance, and New Style Employment and Support Allowance (ESA) are non-means-tested. These particular benefits are assessed based on your individual circumstances, so they won’t be affected by changes in
marital status or cohabitation.
Disability Living Allowance and Personal Independence Payment, for example, are based solely on your disability and how it affects your daily life. And it’s not all bad news – in some cases you might be entitled to more of a certain benefit if you marry or cohabit. “Receiving disability benefits like PIP or DLA can, in some cases, increase the amount you receive from means-tested benefits,” highlight Turn2Us. “For example, if you receive PIP, you are not affected by the Benefit Cap, which is a limit to the total amount of some benefits that working age people can get.”
In contrast, means-tested benefits can be affected. Turn2Us explain: “Means-tested benefits like Universal Credit (UC) and Council Tax Reduction take household savings and income into consideration. Moving in with a partner can significantly impact the amount of benefit you receive. Other factors –such as the number of dependents in the household and the number of bedrooms – can influence the housing element of UC.”
If you move in with or marry someone, you and your partner will need to make a joint UC claim. If they earn over certain thresholds, you may lose your Universal Credit income completely. Equally confusing – if you’re receiving Income-Related ESA, you might lose most or all of it if your partner works 24 hours a week or more.
DREAMS ON HOLD?
Louise Rubin, Head of Policy at disability equality charity Scope told us: “We’ve spoken to disabled people who are shocked to hear they could lose their means-tested benefits if they move in with a partner.
Others are forced to continue living in separate homes.” Many disabled people choose not to marry or cohabit to avoid losing benefits or feeling like a burden on their new partner. This can lead to feelings of isolation, as well as limiting relationship choices.
It’s a sorry state of affairs when love has to be put on hold, or your dreams together can’t be realised, because of what seems to be an unfair benefits system – after all, should your spouse be expected to maintain you, just because you’re married? The days when one income could support a couple, let alone a family with children, are long gone – most households need at least two incomes to afford the cost of living.
2023 research by the Joseph Rowntree Foundation found that a single person needs to earn £29,500 a year to reach a minimum acceptable standard of living, while a couple with two children needs to earn £50,000 between them.
POWER IMBALANCE
When you choose to move in together, finances are usually one of the first things you’ll discuss – who’ll pay the rent or mortgage, how you’ll split the bills, and if you’ll open a joint account for food shopping, for example. But if you get together and lose some or all of your benefits because your new partner earns ‘too much’, you’ll undoubtedly become more reliant on your partner’s income. This can lead to a power imbalance, leaving you open to a range of issues, not least an impact on your self-esteem and mental health. Losing your financial independence and becoming dependent on your partner can make you feel less valued and autonomous. Then there’s the issue of financial abuse – with one partner earning the money and controlling the finances, there’s a risk that the disabled partner may feel pressured or trapped, or become the victim of financial abuse.
The days when one income could support a couple, let alone a family, are long gone
However, life costs more when you’re disabled: Scope’s 2023 Disability Price Tag report discovered that, on average, disabled households (with at least one disabled adult or child) need an additional £975 a month to have the same standard of living as non-disabled households. Louise from Scope explains: “Current policies can push disabled people towards greater financial insecurity and dependency. It shouldn’t be like this. We want Government to listen to disabled people and fix the broken benefits system, to ensure all disabled people can get the support they need.”
It’s crucial to consider the financial implications carefully and discuss them openly with your partner.
Planning ahead – by using the Turn2Us or EntitledTo benefits calculators, and speaking to benefits specialists – can help you manage the transition more smoothly as you navigate your new life together.
DWP: gov.uk/browse/benefits/disability
EntitledTo: entitledto.co.uk
Scope: scope.org.uk / 0808 800 3333
Turn2Us: turn2us.org.uk
Golden Lane Housing
is one of the country’s leading supported housing landlords for people with learning disabilities and autistic people.
For over 25 years, Golden Lane Housing has been creating successful specialised supported housing solutions for people with a learning disability and autistic people.
We have grown to provide homes for over 2,800 people, and operate across England, Wales and Northern Ireland.
Working with others is central to everything we do. We work in partnership with many different support providers, so all our tenants can access the support they need to flourish in their home and community.
We work closely with local commissioners of care and support to make sure that our housing solutions are commissioned, in line with their social services and health strategies and priorities.
Whether a person is receiving support through a local authority contract or an individual budget, we want to make sure there’s always a joined-up approach.
Adaptive fashion
High street shops are slowly waking up to the importance of adaptive fashion. Primark announced it’s teaming up with disability advocate Victoria Jenkins to offer more disabledfriendly items. The brand’s first adaptive collection, launched in January, offered lingerie with magnetic closures. Victoria, who founded adaptive fashion brand unhidden.co.uk, said: “Primark recognising the needs of the disabled community…is going to be life-changing for millions of people, and I am excited to work with Primark to bring this to life.” The new range will appear in stores later in 2024, primark.com
Comfy crutches
UK-based Cool Crutches has recently launched cuff covers – super soft, neoprene covers which slide over the cuffs on your crutches. Reviewers have said they’re “very comfortable” and are pleased they’ve had “no more bruising and pinching” after using the cuff covers. These latex free, sweat proof and easy to use covers ensure your crutch cuff won’t catch clothing or anything else as you move.
£16.63 for one, £20.82 for a pair, coolcrutches.com
Product picks
Warming up
As the nights draw in and temperatures drop, it might be time to invest in a heated blanket. Relatively cheap to run – especially if you’re ‘heating the person, not the room’ – Lakeland’s StaySnug faux fur heated throw has been highly rated by the Good Housekeeping Institute. With multiple heat and timer settings, this 160 x 120cm blanket costs a penny per hour to use. It heats up quickly and maintains its temperature evenly, plus the warmth is distributed well across the soft fabric of the throw, making it perfect for keeping you warm for less.
£119.99, lakeland.co.uk
Get gaming
Love to game but can’t find a controller that suits your needs? PlayStation’s Access Controller has been designed to help disabled gamers play more comfortably, for longer. It can be operated from any 360° orientation and used on flat surfaces like a wheelchair tray, plus you can configure the button layout and stick caps to find the shape and texture that works best for you. You can also combine two Access Controllers together, or connect additional buttons or trigger switches via the four expansion ports. The controller was designed with support from community members including AbleGamers and SpecialEffect, meaning that the design, functionality and even packaging has been shaped by the gamers who use it. Perfect for PS5 fans!
£79.99, direct.playstation.com
The diary
13 SEPTEMBER-13 OCTOBER
Festival of Walking
Various locations
Organised annually by the youth hostelling charity YHA (England & Wales), the Festival of Walking aims to get more people walking, particularly those who are new to the great outdoors, or who face barriers to access.
52 YHA hostels are hosting a series of guided, themed walks during the month-long festival. They focus on health and wellbeing, learning new walking skills, and connecting with nature and heritage. As part of the festival, you can download more than 150 circular walking routes – including accessible routes suitable for motorised wheelchairs. yha.org.uk/festival-of-walking
9-10 OCTOBER
The Care Show
Birmingham NEC
An unmissable event for anyone working in the social care sector, The Care Show features the latest products and services from over 200 leading healthcare suppliers, speakers and experts, CPDaccredited educational sessions, and networking opportunities. For those working in residential, home or healthcare, and even architects and designers, The Care Show aims to help build a be er future for care. A endance is free for social care professionals. careshow.co.uk
16-17 OCTOBER
The Other Side of Dance
Southbank Centre –Queen Elizabeth Hall
As part of Dance Umbrella Festival, the dancer, choreographer, and acrobat Diana Niepce explores her recovery from a spinal cord injury. Diana’s work seeks new ways to integrate the disabled body into mainstream dance. Both performances feature an extended post-show discussion (BSL interpretation provided on 16 October). Tickets: £18 / £23. danceumbrella.co.uk
13-14 SEPTEMBER
One Big Day Edinburgh
Royal Highland Centre, Edinburgh
At this Motability event, a endees can check out more than 70 cars, wheelchair adapted vehicles, scooters and powered wheelchairs. You can test drive adapted and standard vehicles (don’t forget your driving licence!), find out more about electric vehicles, and chat with Motability Scheme advisors. This accessible event caters for all, with a children’s play area, free face painting and free balloon modelling. Free to a end. motabilitythebigevent.co.uk/edinburgh/
11 OCTOBER
Kidz to Adultz North
Manchester Central
A jam-packed day for the whole family, Kidz to Adultz showcases the latest in assistive technology, product demonstrations, educational seminars and interactive sessions. Designed for children and young people with disabilities and additional needs, and the people who support them, the inclusive event also features Whizz Kidz Wheelchair Skills Training and Marvin’s Story Time Show. Free entry. kidzexhibitions.co.uk
Meadowsweet Bungalow
• Level drive and ramp
• Alerta Low profiling bed
• Oxford Mini 140 hoist
Beautifully presented modern self-catering bungalow in Scotland with spectacular views. Fully accessible for wheelchair users, with specialist equipment Sleeps 5 Meadowsweet is near Kilmartin Glen, in the Moine Mhor National Nature Reserve Heating and linen is provided Fibre broadband, BT TV and WiFi. Ruth Bebb ruthbebb@btinternet.com www.meadowsweetbungalow.co.uk
• Freeway Tilting Shower Chair
• Fully adapted wet room
• Wide doors, spacious rooms
WIN
AN AMAZON KINDLE
This issue, Enable readers have the chance to win a Kindle Paperwhite e-reader
Enter our latest competition and be in with the chance of winning a Kindle worth £94.99. It’s perfect for cosying up with indoors while the leaves fall outdoors.
The Amazon Kindle Paperwhite has fonts, se ings and special features that improve the reading experience for disabled people.
The accessible reading device has a 6”, 300ppi high-resolution display, plus the Kindle boasts the Voice View screenreader function, Word Wise which lets you look up definitions, X-Ray for reference, the OpenDyslexic font, varying font sizes and layouts for visual enhancement, and dark mode to reduce eye strain and stimulation. With the Kindle Paperwhite, you can immerse yourself in the world of stories and find pleasure in a new book.
HOW TO ENTER
Simply send us your name, contact details and where you picked up your copy of Enable. Deadline for entries: Monday 21 October 2024. BY EMAIL competitions@dcpublishing.co.uk quoting Kindle 2024 ONLINE www.enablemagazine.co.uk/kindle2024
BY POST Competition, DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG
TERMS AND CONDITIONS: All entries must be received by Monday 21 October 2024. The prize is one Amazon Kindle (2022 model) which will be sent to the winner. The prize is non-transferable, non-refundable, there is no cash alternative and it cannot be sold to another party. The contents of the prize may differ from the images and descriptions included here. One entry per household. The publisher’s decision is final. If you do not wish to receive further communications from Enable Magazine, include ‘opt-out’ in your entry. This competition is not being run in conjunction with Amazon.
Based in Great Bedwyn, Wiltshire, close to the M4 No experience necessary – full training given
www.bruceboats.katrust.org.uk
email: bruceboats@katrust.org.uk
CAR INSURANCE ADAPTED FOR YOU
We understand how important your vehicle is, especially if it’s been adapted or modified to cater to your disability. Whether your whole vehicle has been converted by a specialist or you’re using aftermarket accessories to make it more accessible, we offer tailored policies to suit your needs.
It’s no wonder our insurance is trusted by Team BRIT drivers.
Policy benefits can include:
Lost or damaged adaptations are replaced with newer versions
Cover for your manual wheelchair when it’s in your vehicle
Part of the Kennet & Avon Canal Trust, Registered Charity No. CC209206
Suitable courtesy car or money towards transport
Cover available for carers who use your car
Noah Cosby, Team BRIT Driver VW Polo R Line adapted with Push/Pull Hand controls
REVIEW
KGM TIVOLI
KGM is the new name for SsangYong, and the Tivoli remains keen value in the small SUV class
INSIDE
The Tivoli’s cabin has been updated with the switch in name to KGM. You get a high-up driving position which o ers great vision for the driver, even if the thick rear pillars can make changing lanes a li le trickier than in some rivals. Ge ing in and out is simple thanks to the elevated seat, and there’s manual height adjustment for the driver, plus the steering wheel moves for
depth and angle. Heating controls ditch bu ons for a touch-sensitive panel, while the infotainment screen is easy to navigate, even if it’s not the most stylish. This is one of the roomiest cars in its class for back seat occupants. You might have to use the rear footwell to store a wheelchair though –although the 423 litre boot is a decent size, the slope of the tailgate makes it less useful than a Dacia Duster’s.
This is one of the roomiest cars in its class for back seat occupants
The KGM Tivoli 1.5 K40 five-door is available through Motability. For manual transmission, you’ll pay an advance payment of £599, while for the automatic option you’ll pay an advance payment of £799. Both options use the total mobility allowance of your PIP.
Find out more at www.motability.co.uk
EQUIPMENT DRIVING
The Tivoli now comes in a single trim level, called K40. Both manual or automatic versions have the same equipment, meaning you get 18 inch alloy wheels, all-round parking sensors and reversing camera, automatic headlights and wipers, keyless ignition, and the latest safety kit. The front seats and steering wheel are heated, while leather upholstery is standard. You also get electric windows throughout, rear privacy glass, a 10.25 inch main dash display, and a 9 inch infotainment touchscreen with TomTom sat nav, DAB and Bluetooth, plus Apple CarPlay and Android Auto.
The Tivoli is only available with a 163hp 1.5-litre petrol engine, which you can have with a six-speed manual gearbox or automatic transmission. We’d choose the six-speed auto as it swaps gears smoothly and suits the Tivoli’s easygoing nature. There’s no noticeable di erence in acceleration, and fuel economy with the automatic dips by 3mpg to a 36.4mpg average.
You won’t want to rev the 1.5-litre engine too hard as it becomes a bit rowdy beyond 3500rpm, but the automatic is happy to shi up by then. There’s also more wind and road noise in the Tivoli than a Ford Puma
or Skoda Kamiq, and the KGM can’t match these rivals for handling or comfort on rougher roads. The KGM does feel jiggly on pi ed surfaces, but it’s very easy to guide through town thanks to light steering and a compact turning circle.
SUMMARY
KGM has not altered the Tivoli much beyond a mild refresh. It retains value, cabin space, and plenty of kit, but it’s not as good to drive as key competitors.
• Maximum carrying capacity 19 stone
• Range upto 13 miles
• Manoeuvrable with tight turning circle
• Lightweight (Front section 14.8kg) Scan to visit website Available on
Jane Hatton
Jane is the founder of Evenbreak, a social enterprise run by and for disabled people, with a specialist job board and a career hive.
Send your questions to editor@dcpublishing.co.uk
EMPLOYMENT Q&A
Q Getting into LinkedIn
In her column, Jane Hatton, founder of Evenbreak, answers your employment questions
I’m
active on TikTok, but I’m told I should have a LinkedIn account as I’m looking for work. Isn’t my TikTok account enough? I don’t really know much about LinkedIn.
Joining LinkedIn is a great idea – it’s used frequently by recruiters and employers who are looking for candidates. LinkedIn has many features designed to help you showcase your knowledge and skills, plus you can do everything you need with the free version.
Your Profile
Your profile is the first thing a recruiter looks at. It’s a good idea to include a photo of yourself, and complete all the appropriate sections, such as your work history, qualifications and education. You can also write about yourself here: mention your strengths and the work achievements you’re most proud of, and list your skills in the relevant section to help recruiters find you.
Recommendations
Recommendations on LinkedIn are a powerful tool for recruiters to see what you’re like to work with. Connect with people you’ve worked with previously, such as managers, colleagues, customers, suppliers, those you’ve worked with in a voluntary capacity, and tutors. You can write recommendations for them, and ask them to write a recommendation for you.
Make Connections
LinkedIn will suggest people you can connect with, and you can also ask people you’re already connected with to introduce you to their connections, if relevant. This helps you build a large number of connections with people who could be useful to know.
Knowledge Showcase
There are three main ways to show your knowledge on LinkedIn. Firstly, you can join up to 50 groups. If you join groups relevant to your field of work, you can answer people’s questions, refer them to useful resources, and demonstrate your knowledge. Secondly, you can write short articles and publish them on LinkedIn to demonstrate your expertise and ways of thinking. Finally, status updates let you share what you’re
LinkedIn has many features that help you showcase your knowledge and skills
working on, lessons learned, links to articles you’ve written, or highlight interesting things for others to read.
Think Like a Recruiter
What qualities do you think recruiters are looking for in the ideal candidate for your ideal role? Does the information in your profile and content match these qualities? How can you ensure your presence on LinkedIn makes you an attractive candidate? Look at Evenbreak (evenbreak. co.uk) for jobs with employers who are actively trying to attract disabled candidates, and set up alerts for the kinds of role you are interested in.
enable employment
It’s not what you know…
…But who you know. Far from being all about too-early breakfast networking sessions or suited yawn-fests where everyone stiffly shakes hands and swaps business cards, networking – like working life – has evolved in recent years
Looking for work, aiming for a promotion or new role, or simply want to share your experiences with others? Networking helps you form relationships with people who can support your professional journey, and connects you with employers who could give you a boost up the career ladder. It also helps you stay visible – crucial in a competitive job market. Attend a great networking event and you could be learning about the latest industry trends, picking up sector-specific skills, and uncovering new perspectives. If you’re disabled, networking can provide access to a community of peers who understand the challenges you face and want to support your development.
TWO-WAY STREET
Of course, networking isn’t only about what others can do for you. It’s a twoway street – you can also offer your skills, expertise, and support to others. So make sure you’re listening, offering advice, and answering questions you feel able to answer.
Larger employers often have their own internal equality and diversity networks, some of which specifically cater for disabled employees. For instance, KPMG offers WorkAbility, BeMindful and Neurodiversity Employee Networks, while Compass Group hosts monthly InclusiviTEA events. Internal networks like these provide an opportunity for disabled staff to meet colleagues and provide valuable input into the company’s culture.
OPEN TO OPPORTUNITIES
Professional bodies like unions or business enterprise groups (such as
Business Gateway in Scotland, or the Federation of Small Businesses) provide networking opportunities for entrepreneurs, business owners and self-employed people.
Any networking events you attend don’t have to be disability-specific – just ensure you check out access arrangements in advance and advocate for the adjustments you require – perhaps an interpreter or step-free movement around the venue – so you can participate fully. Your attendance will help normalise disability in working life and ensure you’re taking your space at the table.
BE PREPARED
Networking helps you form relationships with people
Before an in-person event, you can prepare by researching attendees or speakers you’d like to meet. Don’t be afraid to introduce yourself and talk about your career goals. Afterwards, follow up with new connections via email or LinkedIn – building a network takes ongoing effort.
Face to face networking doesn’t suit everyone. You can find online networking opportunities via trade bodies and business coaches, for example. Alternatively, Facebook, Instagram and LinkedIn host lots of sector specific accounts, groups and recruitment pages. Keep your profile up to date, and engage with your network frequently by sharing articles, commenting on posts, and reaching out to people you want to connect with.
If you’re looking to advance your career, networking is where it’s at. Whether in-person or online, be authentic, helpful and curious, so you can build a network that supports your professional aspirations and empowers you to navigate your career with confidence.
Find your perfect place.
As a leading recruitment outsourcing provider, Guidant Global can offer you direct and exclusive access to great jobs with some of the UK’s top employers.
We’re also a Disability Confident Leader, and our award-winning approach to disability inclusion is building careers and changing lives. It goes without saying, we welcome applications from people with disabilities! In fact, if you have a disability, we’ll guarantee you an interview for any internal role (assuming you meet the minimum
criteria required for the job) and please don’t forget to tell us about any adjustments you might need during the recruitment process.
If you would like to find out more about inclusive careers at Guidant Global, or search for roles with our amazing clients, please visit our website. jobs.guidantgroup.com
TIME FOR A CHANGE
Returning to work after becoming disabled can be challenging, but working with your employer to make adjustments to your role and the working environment can make the experience easier. In some cases though, returning to your previous role isn’t an option. When that happens, what can you do? We investigate
enable employment
B
ecoming disabled – perhaps through spinal cord injury, a musculoskeletal disorder, mental ill health, or sight or hearing loss – has a large impact across many areas of a person’s life. From relationships to sleep, hobbies to employment, the effects of becoming disabled run deep.
Thanks to legislation, all disabled people are entitled to request reasonable adjustments in the workplace. If you acquire your disability during your working life – around 80% of disabilities are acquired, rather than people being born with them – then it’s likely you’ll need to seek changes to help adapt your role.
But no matter how good the reasonable adjustments are, some jobs end up being completely off-limits when you become disabled. Take Enable columnist Tim Rushby-Smith. A tree surgeon prior to his spinal cord injury, he couldn’t return to his role when he became paraplegic, and now loves his work as a writer.
DEEP IMPACT
Not being able to return to a job you’ve spent years training for, or are very accomplished at, can be hard. The loss of a secure income, a social network, and the routine and schedule of being in work can be hard to adapt to while you’re in recovery or adjusting to life as a newly-disabled person. That’s not to mention the mental health impact of becoming disabled, plus the added challenges of applying for benefits and dealing with things like treatments, surgeries or home adaptations.
Becoming disabled can take a long time to adjust to... if you ever truly ‘adjust’. In most cases, you’ll never be the ‘same’ person again – but that doesn’t always have to be a bad thing. Living with a long-term condition, physical disability or mental health issue can give you a very specific and valuable skill set. Your experiences may have led you to become more resilient, and you may benefit from having undergone personal growth and developing self-acceptance. Often you’ll have improved coping skills, which can lead to more creative approaches when it comes to problemsolving – useful, transferable attributes that many recruiters are looking for when they’re filling roles.
INNOVATIVE AND CREATIVE
The research project Getting to Equal: The Disability Inclusion Advantage, carried out by Accenture, discovered that companies that hire disabled people perform better, and see an average of 23% higher revenue. The research quoted a VP of CVS Health (a leading pharmacy chain in the US), David Casey, who said: “People with disabilities tend to be some of the most creative, innovative and loyal employees. A person with a disability wakes up every day thinking about being innovative – that is a skill set.”
So how do you go about getting into a new role? While returning to your previous work may no longer be an option, you can consider volunteering, retraining or undertaking new qualifications.
There are a number of organisations around that can help, like Shaw Trust, which provides career support, and learning and skills services to help people secure good work, whether they have disabilities, have been out of work for a while, or are facing barriers to employment.
Homelessness charity The Big Issue has recently teamed up with brain injury recovery charity SameYou to launch a new partnership that provides job coaches for survivors and their loved ones after trauma. Big Issue Recruit delivers training, employability, health and wellbeing support, financial and digital inclusion and, ultimately, sustainable careers.
AFTER BRAIN INJURY
Tim was working as a warehouse manager when an operation on his spine caused complications and he took voluntary redundancy. Using crutches and unable to do a physically demanding job, he decided to retrain as a counsellor. But in 2005, everything changed. “I was driving my daughter to school when I suffered a series of epileptic seizures,” explains Tim. Afterwards, he struggled with memory, concentration and fatigue, eventually dropping out of his counselling training. After more than a year back and forth between medical experts, Tim was told he had two benign brain tumours. Having originally been diagnosed with epilepsy, Tim could now understand where his symptoms were coming from.
“It impacted my mental health so
People with disabilities tend to be some of the most creative, innovative and loyal employees
much,” he admits. “I hated the new me.” Tim says his wife and children have been his rock throughout.
With the support of organisations including Headway East Northants, SameYou, and his church, Tim has retrained as a peer support worker, using talking therapies to help people who’ve experienced brain injury or other illness. He explains that he was never one to talk about his experiences or feelings, but now understands how vital that is. Tim works with families, groups and individuals to help them, and speaks to universities, healthcare workers, researchers and at conferences to outline the importance of lived experience when creating solutions to help brain injury survivors.
“I’ve tried to turn what has been a negative part of my life into a positive thing,” admits Tim. “A fellow volunteer said I was a great example of posttraumatic growth, which was hard for me to see. But, after looking back at all that I have achieved since my brain injury, I can now see it.”
Tim with his wife, Michelle
We’ve been named as a disability confident employer by Jobcentre Plus and have a positive attitude towards job applications from disabled people.
As we progress, we’ll continue to improve the way that we support our staff, customers, and stakeholders, regardless of disability, gender, ethnicity, age, religion, or sexual orientation.
Our Equality, Diversity, and Inclusion strategy is a priority at RoS. It’s not a one off or an event, it is an ongoing process, and we will work for our colleagues to feel safe, supported and included at work.
We want to be an employer of choice, attracting and retaining the best and widest possible pool of talent. We’ve equality at our core.
that makes a difference
www.audit.scot/about-us/work-with-us
The joy of reading
A good story never leaves you. From trips to the library as a child to se ling down with a book at bedtime, reading opens up a whole new world
It’s never been easier to access reading.
Most smartphones and e-readers – like Kindles – have built-in screen readers, magnification and other accessibility features. You can even enjoy audiobooks via your smart speaker. Listening Books makes reading more accessible for people who find it challenging to read or hold a book. With more than 10,000 titles, the service supports people who have a range of disabilities such as glaucoma, anxiety and MS. Membership costs £20 per year, or is free for those who struggle to pay. Visit listening-books. org.uk to find out more.
Your local library o ers something for everyone, whether it’s biographies, crime, romance or local history. Some loan audiobooks, braille and large print books, DVDs, and even toys. There’s a range of services and activities available too, like book clubs, cra groups and learning opportunities.
And, if ge ing to your local library is an issue, a library membership can open up endless reading opportunities via Libby – a free app you can use via your phone, tablet or computer, which lets you enjoy eBooks, audiobooks, and magazines.
READING COMMUNITY
of literature and discovering new titles, as well as helping you connect with fellow readers and new authors.
A quick search of #DisabledBookTok on TikTok will help you discover trending books, book reviews, and disabled authors writing about topics that ma er (like disability activist Alice Wong’s biography Year of the Tiger). You’ll also find recommendations for books with positive representations of disability, or stories featuring disabled main characters, such as The Whispering Dark, a thriller by deaf author Kelly Andrew. The friendly, inclusive BookTok community o ers a great way of sharing your love
LESS ISOLATED
WIN!
Head to page 54 for your chance to win a Kindle
Paperwhite e-reader
Hopefully readers might feel less isolated if they read a story like this
More disabled writers are pu ing pen to paper (or finger to keyboard) to share their stories and welcome readers into their worlds. Writer Lore a Mason had her first book – Li le Lola Living with Arthritis – published last year. Aimed at younger readers, it tells the story of Lola who, like Lore a, is diagnosed with arthritis as a child. The book considers the emotional journey of living with a chronic illness, in a bid to foster positive conversations about disability and self-worth. Lore a says “I don’t remember coming across any books like mine when I was younger, or books about disabled children. Hopefully readers might feel less isolated if they read a story like this.”
And that’s what reading is all about – opening up new worlds, learning something new, and enjoying some proper relaxation as you get lost in a good book.
