PosAbility – June / July 2020 by 2A Publishing

Jun/Jul

2020

MAGAZINE SIZZLING SUMMER

PROJ E C T ISOL AT ION

VIRTUAL REALITY

Everything you need to look hot but stay cool

Capturing lockdown through the photographerâ&#x20AC;&#x2122;s lens

Online tours, dance classes and BSL courses to keep you busy

ASSURANCE FOR WHEREVER LIFE TAKES YOU

OUR MULTI-AWARD-WINNING COMPACT SUV NOW ON MOTABILIT Y Experience a car that’s designed to put you first, from the inside out. With our Motability Scheme offers, the multi-award-winning XC40 could be yours for less. Enjoy the comprehensive range of features on our compact SUV, which simplify your journey from start to finish. Intuitive 9-inch Touch Screen | Volvo On Call Optional Park Assist Pilot | Optional programmable tailgate opening height Euro NCAP five-star safety rating | 479 litres of load space VISIT VOLVOCARS.CO.UK/MOTABILITY

Fuel consumption and CO2* figures for the Volvo XC40 range, in MPG (l/100km): WLTP Combined 31.0 – 141.1 (9.1 – 2.0). NEDC CO2 emissions 168 – 41g/km. Twin Engine WLTP electric energy consumption 3.7 – 4.0 miles/kWh. Twin Engine WLTP all electric range 26.1 – 28.0 miles. Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted (post-registration), variations in weather, driving styles and vehicle load. *There is a new test used for fuel consumption and CO2 figures. The CO2 figures shown, however, are based on the outgoing test cycle and will be used to calculate vehicle tax on first registration. To be eligible to join the Motability Scheme you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate Mobility Component of Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment, which will be taken in lieu of the four-weekly rental for 36 months’ duration. 60,000 mile allowance over 3 years; excess mileage charges may apply. Available at participating retailers. Offer not available with other promotions and may be subject to change. For full terms and conditions, visit www.motability.co.uk. Motability Contract Hire Scheme is administered by Motability Operations Limited (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London SE1 9HB.

Welcome JUN/JUL 20

and enjoy the sun. We need to take a little happiness and positivity where we can get it right now, and for now that is the weather.

Ros EDITOR

s we are all getting somewhat used to our new normal, hidden away in our homes and leading a sort of virtual life by way of Zoom and FaceTime, we must not forget that summer is upon us. With that comes sunshine, warmth, longer days and lifted spirits. Many people are arguing that they would rather be in lockdown in the winter when you don’t mind staying in and being curled up with a good book. However, I disagree, the sun makes everything feel a little less harsh at the moment and it draws you out of isolation, encouraging you to get outside for your allotted exercise

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This issue we have tried not to fill it with coronavirus-related content, but it has certainly seeped in where appropriate. We bring families ideas of what to do in lockdown with young disabled children, we hear the pandemic take aways from our columnists and we look at how one charity is supporting disabled people in the developing world. You will find everything you need for summer in our essential guide on page 30 and we bring you some healthy snack recipes to help bring some balance to the natural lockdown snacking habits on page 20. Hannah Hoskins shares why pimping her mobility aid was the best thing she has done and accessible travel writer Carrie-Ann Lightley, discusses the importance of accurate and detailed accessibility information. Plus you will find our usual instalments of products and an incredible competition to win a SmartDrive MX2+ on page 29. Hopefully by next issue we will be focussing on all the things we can go out and do, until then stay safe.

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Editor: Rosalind Tulloch Staff Writers: Katie Campbell Designer: Fionnlagh Ballantine Sales: Val Speers, Cassie Thompson

CONTRIBUTORS

Sam Renke, Mik Scarlet, Dan White, Jane Hatton, Hannah Hoskins, Jenna Farmer, CarrieAnn Lightley, Melissa Cassidy

DISCLAIMER

PosAbility Magazine is published by 2A Publishing Limited. The views expressed in PosAbility Magazine are not necessarily the views of the editor or the publisher. Reproduction in part or in whole is strictly prohibited without the explicit written consent of the publisher. Copyright 2020 ©2A Publishing Limited. All Rights Reserved. ISSN 2049-2251

Contact Details: Caledonia House, Evanton Drive, Thornliebank Ind. Est., Glasgow, G46 8JT Tel: 0141 465 2960 Fax: 0141 258 7783 enquiries@2apublishing.co.uk posabilitymagazine.co.uk

Jun/Jul

2020

MAGAZINE SIZZLING SUMMER

PRO JEC T IS O LATIO N

VIRTUAL REALITY

Everything you need to look hot but stay cool

Capturing lockdown through the photographer’s lens

Online tours, dance classes and BSL courses to keep you busy

To find out more about subscribing to PosAbility Magazine turn to p66

Image by @scallywagfox for the Zebedee Management project ‘Project Isolation’ featuring Zebedee Model Lolly S

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ECT I

JUN/JUL 2020 | ISSUE 55

L ATI ON

07 FYI News, stories, and updates

33 THE MISUNDERSTOOD DISEASE ME/CFS is a woefully misunderstood condition and these misconceptions are very damaging to the ME/ CFS community

12 PROJECT ISOLATION Zebedee Management connected their models with photographers to get creative and innovative in lockdown

36 HOT STUFF The latest must-have products on the market

16 WHY I PIMPED MY MOBILITY AID Hannah Hoskins is making mobility aids sexy, and you should too

44 THE POWER OF ACCESSIBILITY INFO Carrie-Ann Lightley discusses the importance of accurate access information

19 THE MORAL HIGH GROUND Sam Renke discusses the need for the understanding of everyone’s situation during lockdown

20 JUST A LITTLE SNACCIDENT Trying to stay away from the fridge while you are locked down at home? We bring you some healthy snack options

22 INTERNATIONAL AID CBM is a charity that provides support to disabled people across the globe. We discover how they are helping during the pandemic

46 VIRTUAL VISITING Euan’s Guide bring you some of the virtual wonders available to you online

51 KIDS’ CORNER We bring you some ideas to keep your family sane and occupied throughout this strange time, as well as some great products, and Dan White discusses the forgotten army of parent carers

60 THE RISE OF THE PATIENT ADVOCATE 27 FROM SUPERHUMAN TO VULNERABLE? Mik Scarlet discusses the negative connotations of the term “vulnerable”

29 WIN A SMARTDRIVE MX2+ Permobil are offering one lucky reader the chance to win the incredible SmartDrive MX2+, a revolutionary power assist solution that aids propulsion for manual wheelchair users

30 SIZZLING SUMMER MUST-HAVES Even if we are not allowed out much this summer, we will have you looking hot but staying cool

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Jenna Farmer explores what it takes to be a patient advocate and how to make money from it

62 PODIUM PLACE Liz Johnson, founder of The Ability People, has created an online jobs platform to match disabled freelancers with job opportunities

65 DREAM JOB Jane Hatton reminds us of what Access to Work can offer to employees

Image by Rachel Stewart @rach_stewartillingworth_photo

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Life after traumatic injury can be challenging Blesma is here for all serving and ex-Service men and women who have experienced loss of limb, use of limbs, hearing, sight or speech, either during or after Service

Get in touch to find out how we can support you and your family Tel: 020 8548 7080 Email: membersupport@blesma.org Find out more: www.blesma.org

FOR YOUR INFORMATION News and stories from around the world

DISABLED SIM RACERS WANTED

n all-disabled sim racing team is looking for new people to join its driver line-up.

eTeam BRIT is an off-shoot of alldisabled racing team, Team BRIT, and consists of disabled drivers competing in sim racing competitions. Some of the team’s drivers use specially adapted equipment that allows them to compete on a level playing field with non-disabled drivers, building on the hand control technology used by Team BRIT on the race track. Having launched in 2019, and achieving a number of impressive race results, including 6th place at Le Petits Le Man, the team is looking for more drivers to join them in races this year. Competing using the iRacing and rFactor 2 platforms, plans for 2020 include entering the Spa 24 hour, the Le Mans 24 hour, the Indy 500 and the VRS Endurance Series. The team has also launched a new GT3 Championship. eTeam BRIT manager Max Spooner explains: “We’re really proud of what

we achieved in 2019, and have big plans for the year ahead. Sim racing has been pushed into the spotlight following the COVID-19 pandemic and restrictions on track racing, and it’s been great to see more people discovering the sport and what it can offer. “We’ll be racing online even when track racing re-starts, so we’d be very keen to hear from any disabled sim racers who are looking to get more experience in competitive racing series. It doesn’t matter if you’re completely new to the sport – we just want someone who is determined, committed, and also happy to consider travelling with us to ‘in-person’ events such as the Simply Race Endurance Series held at Milton Keynes. Anyone who is keen can get in touch and we’ll provide support and guidance before a trial and assessment.” Anyone who is interested in finding out more about joining the team, or about the eTeam BRIT GT3 Championship should contact Max via email at eteambrit@teambrit.co.uk.

CHANGING PLACES AWARENESS DAY

aking place on 19 July to raise awareness of the lifechanging difference Changing Places facilities can make to the lives of those who need them. The day also celebrates the vital work that the Changing Places campaign has achieved and recognises all the incredible supporters that have worked tirelessly in their efforts. Did you know that only 18 pubs and restaurant across the UK have a registered Changing Places toilet and only 1% of visitor attractions? The figures are staggering and something that this campaign is working hard to change. You can get involved on 19 July by downloading the Changing Places pledge card to share why Changing Places toilets matter to you or you can take a selfie using one of the Changing Places selfie kit items, and don’t forget to share it online on the day using the hashtag #CPAD2020. You can find all the resources to help raise awareness of Changing Places toilets at changing-places.org.

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AT HOME SUPERHEROES

he Superhero Tri, a fun, full-throttle inclusive sporting event that takes place every summer, has understandably had to be postponed this year in light of current events.

number, memento medal and finish line tape. You will also have access to a dedicated app that allows you to share photos and progress updates. Channel 4 will be doing a round-up of highlights from the challenge on 15 August, so make sure you get your snaps in via the app and you may spot yourself on TV! Sign up to get involved at superheroseries.co.uk.

However, this mass participation event has been replaced by the new At Home Superheroes, powered by Marvel! This at home participation event ensures that all the everyday superheroes across the country can get involved from the comfort of their own home and at their own pace. The beauty of At Home Superheroes is that you can compete anywhere; your living room, your garden or your street. You can walk, wheel, run, cycle and you can do it on your own or with friends, family members or carers. A 20km distance goal has been set, but this too can be adjusted for your own personal circumstances, so simply choose a distance that works for you and get prepared to reach your goal. The challenge can be completed between 15 June and 15 July and all entrants will receive a super race pack that includes a t-shirt, race

NEW DATES FOR KIDZ EVENTS

any events have had to be postponed and cancelled this year due to the pandemic. The Kidz to Adultz events that take place throughout the year are just one of the many events that are currently monitoring the government regulations and postponing events as appropriate. This is being done in the interests of safety for all visitors, exhibitors and staff. The dates for the upcoming Kidz events are now as follows:

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10 Sept 2020 – Kidz to Adultz Scotland, Royal Highland Centre, Edinburgh 30 Sept 2020 – Kidz to Adultz South, Farnborough International Exhibition and Conference Centre 12 Nov 2020 – Kidz to Adultz North, EventCity, Manchester 18 Mar 2021 – Kidz to Adultz Middle, Ricoh Arena, Coventry 25 Jun 2021 – Kidz to Adultz Wales and West, ICC Wales, Newport You can keep up to date on any further changes at kidzexhibitions.co.uk.

2.6 CHALLENGE SUCCESS

ue to the cancellation of major fundraising and sporting events this year, many charities have taken a big hit. The loss of billions of pounds for charities has had a serious effect, with many having to reduce vital services or stop work completely. The Virgin Money London Marathon alone raised more than £66.4 million for charities last year, but sadly it could not go ahead this year. In response to the gap in fundraising for charities, the 2.6 challenge was created.

EUAN’S GUIDE LAUNCHES FORUM

he disabled access review site, Euan’s Guide, has recently created a forum to help disabled people connect through these strange times.

Recognising the isolation people were feeling and being unable to carry on promoting the physical review side of the site, the team at

This challenge encouraged everyone, of any age or ability, to get involved with their own 2.6 challenge – this could be running 2.6 miles, dancing for 2.6 minutes, cycling 26km – the challenge was up to you. Thousands of people got involved setting their own challenges, raising money for their chosen charity, and sharing their successes online. The challenge has raised over £10.7 million to date and the total continues to grow. Find out more at twopointsixchallenge.co.uk.

Euan’s Guide decided to create a forum for disabled people to talk about some of the virtual experiences they have come across online. Many tourist attractions throughout the UK have created virtual tours to allow people to still experience their venues, even through lockdown. The forum has proven to be a great tool for Euan’s Guide followers to share and gain ideas and knowledge. You can read more about the virtual tours available on page 46 of this issue of PosAbility, and you can join the Euan’s Guide forum at euansguide.org.uk.

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ADOPT A GRANDPARENT

Surrey-based carehome group called CHD Living started a scheme last year called ‘Adopt a Grandparent’ that was designed to pair up residents with local children and adults who either don’t have any grandparents or don’t see their grandparents. Following the announcement of the lockdown they had to digitise the scheme and this has allowed them to reach volunteers across the globe who want to get involved.

was to promote intergenerational communication and the relationship between children and older people, which is very valuable.” “By taking it digital, we felt it was so valuable to relieve potential feelings of isolation and loneliness.” Ms Hasham has described the response as “overwhelming” and staff have commented that the volunteers are getting as much out of it as the residents.

More than 28,000 people across the world have signed up to provide virtual companionship to the residents of the 16 CHD Living carehomes in Surrey.

It has been a beautiful example of human kindness and connectivity in a period of isolation. They hope to widen the reach of the scheme to include other carehomes in the future.

Shaleeza Hasham, head of communications for CHD Living commented: “The idea behind it

You can ‘Adopt a Grandparent’ at chdliving.co.uk/adopt-grandparent.

LATEST

TWEETS

Branda Holden @Brenzi777 Social media has a lot to answer for when it comes to mental health! Opinions are like arseholes! Everyone has them and they all stink! #WednesdayWisdom #MentalHealthAwarenessWeek

Dan White @Danwhite1972 My daughter is 14 tomorrow & throughout lockdown has watched many briefings & seen many newscasts. She remarked to me upon going to bed (to quote her late grandad) that: “They couldn’t organise a p*** up in a brewery dad” ... vote Emily

Daniel Moore @Talmandaniel Just went to ask Google what the differences between swifts and swallows were and ended up saying ‘swofts and swivells’. Google was like ‘yer what?’ #brainfog #MyalgicE #MEAwarenessWeek

Dr Amy Kavanagh @BlondeHistorian It’s 2020. Auto pilot on planes has existed for decades. We nearly have driverless cars. We have facial recognition. You can use a phone app to translate any language. And yet people still can’t imagine how a blind person can use a smart phone

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Project Isolation BY ROSALIND TULLOCH

Lockdown through the lens

Isolation has been hanging over the country like a dark cloud. The restrictions of lockdown, the distance from family and loved ones, the frustration of disrupted routine, cancelled plans and the loss of physical contact has all taken its toll. Loneliness has reared its ugly head and the disabled community has felt the effects and isolation of this new life we are living.

ebedee Management is the specialist talent agency that solely represents disabled people and people of alternative appearances. As an agency they have done incredible work in showcasing the diverse and beautiful faces of the disabled community, increasing the prevalence of disability in the images we see in the media and promoting the need for diversity. Recognising the huge impact that isolation has had on the disabled community, the team at Zebedee created Project Isolation. This project brought together photographers and the Zebedee community to create stunning portraits that represent this period of isolation. Project Isolation was designed to give the Zebedee models and photographers the opportunity to facilitate home-based, creative shoots to continue to support their creative abilities and bring the community together. The beauty of modern technology, like FaceTime and Zoom, has allowed stunning images to be created through an unorthodox platform. We have showcased just some of the results here, along with quotes from the models who took part, sharing their experiences of lockdown and the meaning this shoot had for them.

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CAPRICE

Images by Emli Bendixen @emli_b â&#x20AC;&#x153;Lockdown has had a huge impact on the world, but many disabled people like myself have lived an isolated life for a very long time. Taking part in Project Isolation was a creative and interactive process that both myself and the photographer really enjoyed â&#x20AC;&#x201C; this project has ultimately made me feel less alone and has helped uplift the feelings of isolation.â&#x20AC;?

MONIQUE Images by @scallywagfox

“I know isolation is hard on everyone but for me, at least for the first few weeks, it was normal. I get ill quite easily so have spent weeks at home many times before. I usually take it as time to recharge and get better but almost two months in this is slowly hitting me. The world is now so different and changing to digital/online everything! Workshops, pubs, parties, quiz nights, hugs, laughs etc. Small things hit me the most, like mum not popping over with soup and her delicious Jamaican food, fresh air don’t feel so fresh when constantly wearing a mask and me not being able to just pop out for some ”fresh air” while unwell (fresh air usually meant a small trip to town to treat myself to new trainers or clothes) LOL. Doing isolation alone for so long would have driven me crazy so my friend invited me to move in and they have the cutest dog who I share isolation with every day. I’m looking to get my own dog when I’m back home as only now chilling with Bernard do I understand the love of a dog. Isolation is and has been hard, but just like when I’m unwell I think of even a small positive to look forward to afterwards which always gets me through the worst times. My silver lining is a new love for dogs and getting my own little puppy to train as an assistance dog. What’s your Isolation silver lining?”

ANGELA

Images by Rachel Stewart @rach_stewartillingworth_photo ”Welcome to my world of isolation. For some this time may be quite scary and lonely but for some living with differences, like myself, it can be quite normal.”

ELLIE G

Images by @David_Vintner “Let’s show the community how strong and brave we are together! I can get through this, I get through life every day!”

FREYA

LOLLY S

“Lockdown is about isolating our bodies, not our minds. Our emotions are going through something they’ve never been through before. I know that to help myself get through this, I need to stay in contact with people. That’s why project isolation is so important, it helps us realise that we are not alone.”

“My illness often keeps me home through the winter, where I rest and wait, looking forward to the spring and summer arriving, with warmth for my bones and that extra energy I need to be able to work and meet with the ones I love. I run a wedding venue in the summer season, with festivals, camping and garden parties also a big part of my kife. The gathering of friends and families, in outdoor spaces is such an important pilgrimage, meeting again with those we love. My little caravan and collection of vintage party clothes also come out of hibernation to dance, sing and play. Life with a disability is isolating, especially in winter time, and to know this has now extended into the spring and possibly the summer has been hard to deal with. When Jonny, the photographer, approached me about doing a piece together, I told him how I wanted to collect all my wonderful clothes to form an image of everything that still needs to stay in ‘hibernation’, including me. As we used a large (and heavy!) office scanner, rather than a handheld, it was only possible to do this lying down, and my lovely little caravan was the perfect place. There is a feeling of Ophelia to the styling and the ghostly effect from the scanning. It also reminds me of when I was a child, often having long days, weeks even, of bed rest. I would lie there quietly, often with heavy casts on my legs and arms, and listen to the sound of children playing outside, waiting for when I would be better again and able to join them.”

Images by David Wren

MADDISON Images by Luca Zordan

“Maddie has not been with Zebedee long but in the short time she’s been with them it’s given her a sense of inclusion and acceptance. “Since being in lockdown Maddie started to withdraw again, being a wheelchair user Maddie is not just confined to the house by rules, but also to a wheelchair so she’s very limited to activities. “The isolation project gave her focus and made her feel included in what’s happening in the world. Her way of showing the different feelings of being isolated” Lidia (Maddison’s mum)

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Image by @scallywagfox

BRINSTON Images by Charlie Clift

“Being in lockdown makes you realise how valuable life is and how easily we can lose everything.”

CHARLIE

Images by @DavidHandleyPhoto “Lockdown has meant that Charlie has missed school and all his activities – that makes up most, if not all, of his social interaction. On top of that he has had physio and other therapeutic activities stopped and operations cancelled. We can’t just open the door to the driveway or back garden to him so instead he’s often watched other children bike around or seen pictures of them hiking through fields with their families. Charlie is a very positive boy, but we as parents often feel guilty that he misses out and we have increasingly seen him become frustrated, angry and lacking motivation.”

Mark (Charlie’s dad)

NOAH

Images by Luca Zordan “Isolation is ok because I live on the beach and can go paddle boarding with my sister but I miss playing with my friends. I can’t wait to do my drama club in real life and not on zoom. When isolation is over I want to go to a theme park.”

Project Isolation was commissioned by and features Zebedee models. Follow Zebedee Management through their social media channels to see more stunning images from this project and to follow the amazing work they are doing.

FOLLOW ZEBEDEE Facebook: @zebedeemanagement Twitter: @Zebedeeman Instagram: @zebedee_management

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Pimped WHY I

BY HANNAH HOSKINS

MOBILITY AID

If I am going to be stared at I might as well make a statement

think anyone who uses some form of mobility aid has encountered the stares. You know the ones I mean, that ‘I’m not looking at you but I’m definitely looking at you’ stare. You’ve probably also had the “what’s wrong with you?” conversation which happens so often when you meet new people. They immediately spot your disability aid and normal rules of politeness go out the window and they set off on a fact finding mission to discover exactly why you need said mobility aid. Most of the time it’s not meant to be so rude or personal, it’s just that people don’t actually know what to say to disabled people. When you pair that with the fact that a staggering two thirds of the British public admit that they feel uncomfortable talking to disabled people. You can start to see why they might blurt out the only thing they know to ask. “What’s wrong” is code for “you’re different, why?” To me it always felt like my mobility aid made people have a perception of who I was as a person before they even got to know me. It’s drab and medical facade

said, “I am just the disabled girl and it’s going to be uncomfortable to talk to me”. People avoid the things that make them feel uncomfortable, but at the same time are drawn to it. This means that whenever I walked into a room I could feel all the eyes on me but no one would want to talk to me. I was tired of my mobility aid speaking for me, especially as it wasn’t who I was one bit. It’s why I decided I needed to ‘pimp my ride’. I teamed up with a local artist Charlotte Peacock (@twin_made), and together we took my rollator from medical grey to bubblegum pink and leopard print and she was dubbed Sheila. To say that she draws the eye is an understatement. I had decided that if people were going to stare I might as well make a statement. For me, her brightness which is the antithesis of all mobility aids, screamed, “yes I am here and I am proud of my mobility aid because it offers me freedom”. The process of finally being able to show my personality through my rollator was so empowering. An analogy I often use when talking to people about mobility aids and why it’s important for them to look good is that, honestly, shoes are mobility aids. They help us get from A to B more easily but at the same time we would never question why someone would want to buy pretty shoes in different colours. I mean you only need one pair right? It’s about making a statement and disabled people want to be able to do the same with their mobility aids. It’s why I set up my mobility company, Not Your Grandma’s, we deserve to show off our personalities and to feel empowered. I knew that pimping my mobility aid was an act of reclaiming it and accepting my new normal but what I wasn’t prepared for was the difference in the way other people treated me when I went out and about with Sheila. Yes I still got the stares, maybe a few more because she really is

...yes I am here and I am proud of my mobility aid because it offers me freedom

eye catching but there was a massive shift. Instead of meeting me and asking “what’s wrong with you?” people would often make a comment on Sheila instead. They looked me in the eye and complimented me on my style instead of asking me “what’s wrong with you?” It was like Sheila reminded them that actually behind all of this, there was just a normal person. They didn’t have to mention the difficulties I have with getting around because it didn’t matter. The information they were being told when they saw my mobility aid wasn’t a disabled person who should be pitied, but a vibrant human who liked all things millennial pink and leopard print. They had a starting point to get them over their discomfort and the more they talked to me the more they realised they didn’t need to feel so uncomfortable in the first place. Pimping my mobility aid was one of the best things I have done. I smile every time I get to use her and at the same time I feel like I am teaching people that disability

is the least interesting thing about me and maybe they should spend some time finding that out. I hope that it means that they are more comfortable when they meet the next disabled person and at the very least she sparks some really good honest conversation. At the end of the day, decorating your mobility aid feels like claiming back a part of you that it takes away. If the bonus to that is that people get a better understanding of disability I am all for it.

ABOUT HANNAH Hannah Hoskins is the founder of Not Your Grandma’s, she is making over mobility aids to rid them of their medical appearance and replace them with style and sass. You can follow Hannah on Instagram @notyourgrandmasuk.

...decorating your mobility aid feels like claiming back a part of you that it takes away

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We all welcome a little extra assistance now and again, particularly when travelling alone. Thistle Assistance is an initiative to help you feel safer and more comfortable when using public transport.

thistleassistance.com

I can’t hate on people who have more freedom than me and who are used to going to the gym six times a week or meeting work colleagues at the pub most nights, or who are social butterflies and have memberships to every yoga class out there.

SAM RENKE

I wasn’t showing any empathy. I needed to take a step back and realise that although we are weathering the same storm, we aren’t all in the same boat.

COLUMNIST

I’ve had years of being able to get into a mental state of calm when uncertainty comes slapping me in the face like a soggy slipper. I’ve had years of practice at bed rest, hospital stints and being told “no sorry our venue isn’t wheelchair accessible”. It all sucks for sure, but it doesn’t send me into a spiral of panic. Now I’m asking people to put on my shoes and be ok with it straight away. If I want to show empathy I need to understand that, for some, this is a real challenge and it’s not for me to judge, rather practice what I preach.

Our favourite teacher-turnedactress, Sam Renke, brings you her take on life and the colourful experiences it throws her way.

THE MORAL HIGH GROUND

mpathy is a word I use a lot as a disability campaigner. In fact, all my work involving policy reforms, better treatment for individuals and fighting for equality hinges on getting people to show more empathy and compassion to the disability community.

The premise: only true change can occur if you get a real sense of what life is like for others and a feeling of what it would be like if, in fact, the shoe were to be on the other foot.

not high risk and who could still go out for their shopping and daily exercise. I’d often reply with really snarky messages and send them a plethora of things to do, links on YouTube directing them to learn BSL and book suggestions. At times I’d even berate them and call them out for being lazy or unimaginative. Honestly, they pissed me off. I almost felt a little glad they now had a taste of what life is like for thousands of disabled people who face daily social and attitudinal isolation, making my point that voluntary isolation is a luxury.

It’s certainly a tricky one to master, let alone persuade others to feel for people they don’t know or, on many levels, cannot relate to.

However, this anger and resentment just didn’t feel right. It wasn’t who I am and let’s face it, I was being a complete hypocrite.

The word itself simply means to put one’s feet into someone else’s shoes.

During the first few weeks of lockdown I struggled with people (all non-disabled) messaging me to tell me they were bored out of their minds. The notion of anyone being bored in the 21st century was inconceivable to me. I felt a wave of frustration and anger towards these individuals who were

It’s so hard to show compassion and empathy to those who blatantly show a complete lack of regard for others. Those who aren’t practicing social distancing, having house parties, letting their kids go to friend’s houses, enjoying the sunshine and spending hours at the park. Or even the government who seems at times to be ignoring our health in favour of getting our economy back on track as fast as possible. I believe at times like these the only option is to take the moral high ground. If we expect empathy in our own lives then that’s what we should show to others. We conduct our lives in a way that treats others how we wish to be treated and we always try to put our feet into other people’s shoes before forming an opinion.

“I needed to take a step back and realise that although we are weathering the same storm, we aren’t all in the same boat.”

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JUST A LITTLE

BY ROSALIND TULLOCH A snaccident is the act of accidently consuming a snack, usually something with little or no nutritional value. It perfectly describes all those times you have strolled passed the fridge during lockdown and eaten the last chocolate mousse at 10am, or you have accidently finished an entire packet of biscuits during a Netflix binge. Lockdown was one big snaccident waiting to happen. To help you avoid falling into the vicious cycle of snaccidents and food guilt, we have sourced some healthier snacks that provide nutritional value, satisfy your hunger pangs and leave you with no feelings of shame whatsoever.

CRUNCHY ROASTED CHICKPEAS

Chickpeas are full of protein and high in fibre, so they are a great all-rounder in the snack department. They can also be enjoyed on most diets, and you can almost fool your mind into thinking you are treating yourself to a packet of crisps or popcorn (well, almost). To make these crispy delights, simply drain a tin of chickpeas and place in a bowl with a teaspoon of rapeseed oil (or whatever oil you have in your cupboard) and a teaspoon each of these spices: smoked paprika, ground cumin and ground coriander. Mix them round to ensure all the chickpeas are covered in oil and spices and then pop them on a baking tray and bake them in the oven at 180C for about 35 minutes. Move them around the tray hallway through to ensure they become nice and crisp. Store in an airtight container or separate into bags so you can grab a portion at a time when you feel peckish.

Vegan Sugar-free Gluten-free Dairy-free

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FROZEN BERRY YOGHURT

This quick-to-make, delicious snack is a great alternative to ice cream, which is great during the hot days of summer. No more craving those indulgent tubs of Ben and Jerryâ&#x20AC;&#x2122;s ice cream (well, itâ&#x20AC;&#x2122;s maybe not that good, but you see our point). It is so easy to make, and will be a big crowd pleaser in your household as everyone, young and old, will enjoy a bowl of this deliciousness. All you need is 250g of frozen berries, 250g of low-fat Greek yoghurt and a tablespoon of honey. Throw it all in a food processor and whizz it up until it is the consistency of ice cream. Serve in bowls and enjoy outside in the sunshine, or during movie night, or even at breakfast. We are not judging.

Vegetarian Gluten-free

SMASHED AVOCADO

Okay, so we know you may have to take a mortgage out to keep an avocado habit up, but they really are an oddshaped ball of health and vitamins. They contain “good” fat that helps lower cholesterol and lots of B vitamins which help fight disease and infection, as well as vitamins C and E. They are low in sugar and also contain fibre which helps you feel fuller for longer. One great way to use them is to smash up the flesh in a bowl with a good squeeze of lemon or lime juice and some salt and pepper, you can then enjoy this on rice cakes, toast or dip carrots of breadsticks into it as a dip. Avocado feels substantial so it will definitely fill that hunger hole until dinner. We would recommend buying frozen avocado slices if you can, because the one drawback of fresh avocados (besides the price) is that they remain ripe for approximately 45 minutes before they turn into unappealing brown mush. It is a very stressful waiting and watching game, and a very real first world problem.

EASY TORTILLA CHIPS

A healthy alternative to buying a bag of tortilla chips, these are surprisingly satisfying and great to dip into a healthy salsa or hummus dip. All you need for these are a packet of tortilla wraps (the ones you would normally use for fajitas). Lay one wrap out on a baking tray and brush with a little olive oil, then cut into triangle shapes or longer strips before popping in the oven at 200C and baking for about 10 minutes. Keep an eye on them so they don’t burn. Once they are golden brown, remove and let them cool. You have now created the perfect healthy dipping vehicle for a delicious salsa, or you can use them with the smashed avocado we suggested. You can now sit back and wonder at your culinary skills while munching on your delicious creations.

Vegan Dairy-free

Vegetarian Gluten-free Dairy-free Low-sugar

FLAPJACKS

These vegan flapjacks are so easy to make and will make light work of that sweet tooth at any time of the day. This recipe has been adapted from a BBC Good Food recipe and can be pretty flexible in terms of the nuts and dried fruit you want to add – I tend to add whatever I have left in the cupboard so they taste different every time! Melt 140g of dairy-free spread, 140g of soft light brown sugar and two tablespoons of golden syrup in a pan. Once melted together, remove from the heat and mix in 175g of rolled oats, 75g of chopped nuts and 75g of dried fruit. Mix well and tip into a baking tray lined with baking parchment, pack it in so it is nice and firm and bake in the oven at 160C for about 30-35 minutes. Once they are golden brown, take them out and leave them to cool before portioning them up into squares and nibbling whenever you need a sweet fix.

*Please check ingredients of all shop bought items to ensure they are suitable for your diet. We have tried our best to indicate the diets these recipes are suitable for, however, not all brands are suitable for vegan diets, and some products may contain ingredients unsuitable for other diets. Always check the label.

Vegan Dairy-free

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AID INTERNATIONAL

While we endure the safety of lockdown, and read the daily news stories of the lack of PPE (personal protective equipment) and safety measures for those on the frontline in the UK, or the difficulties many older and disabled people have been facing without carers or personal assistants to help with daily tasks, you would be forgiven for not thinking about what is happening further afield. The reality is that the pandemic has spread globally and many countries do not have a reliable health service,

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BY ROSALIND TULLOCH If we are struggling to provide safe care for disabled and older people, and source vital PPE in this country, then how are people coping in the developing world?

he coronavirus has taken the world by storm, with over 4 million reported cases that have so far claimed nearly 300,000 lives. It is a storm we never anticipated we would have to weather in our lifetime, it is the subject of books and blockbuster movies, not of real life and real people.

modern day sanitising equipment, access to PPE or even access to clean water. So, how are people managing to follow social distancing rules and infection control in those countries? CBM is charity that helps disabled people living in overseas countries, and they have been stepping up to provide frontline staff with PPE and helping to ensure disabled people are given the aid and information they require during this crisis.

ACCESSIBLE MESSAGES EMERGENCY RESPONSE

CBM UK have stated that at times of crisis, people with disabilities are at the greatest risk and can often be among the worst affected and the last to receive help. Some may not hear about the best ways to protect themselves, because health messages are not accessible, while others will be unable to reach help should they become infected with the virus. As people with disabilities are often among the poorest in their communities, they may struggle to access essentials to keep themselves safe, like clean water and soap, and be unable to afford to stock up on food to cope with lockdown restrictions. Movement restrictions to prevent the spread of the virus mean that many support activities have had to be scaled back, leaving people without help they rely on. Children with disabilities may be particularly affected by school closures as they miss out on specialist support they need.

Not all countries have inclusive access to important health messages that are being delivered to the population. People with visual impairments or hearing loss are more at risk of not receiving vital health advice, CBM is working with DPOs and media outlets in Nigeria to provide sign language interpretation. They are also supporting the government in Indonesia to include DPOs in disaster response meetings to raise awareness of the barriers disabled people face in these times and to ensure that the messages and information produced are accessible to all. Support for people’s mental health has also been recognised and CBM continues to work with various countries to ensure people with mental health conditions are still supported through this time. In Nepal they are even providing online counselling to those who require it, and they are delivering online training to mental health champions in Kenya, all with lived experience of mental health conditions, to help them to support their communities and reduce stigma.

CBM runs many projects across Africa and Asia, nearly all of which have been affected. They have been working hard to equip their partner hospitals with as much PPE as possible, but are still struggling to secure face masks and hand sanitisers to protect staff and patients. Nurse Chimi works at a CBM-supported health centre in Cameroon, she commented: “We nurses are at the war front, but have no weapons to defend ourselves… We have no personal protective equipment, no space allocated for COVID-19 cases, no ambulance, no ventilators and limited oxygen tanks… I fear many nurses may die of COVID-19 and I fear exposing my immediate family members. But I love to take care of the sick and I am motivated by my patient’s recovery.” In Zimbabwe, where millions of people were already at risk of starvation due to natural disaster and economic crisis, CBM’s emergency response team is focused on providing essential food aid packages and have been working with partners to ensure that the most vulnerable people in the communities can access food and vital supplies during lockdown.

EMERGENCY CORONAVIRUS APPEAL

CBM launched their Coronavirus Emergency Appeal to fund their response to the pandemic and to enable them to support their partners and protect disabled people throughout the world. They are working tirelessly to ensure no one is left behind in this crisis. If you would like to know more about the appeal visit cbmuk.org.uk/Covid19.

Working with local partners and disabled people’s organisations (DPO) in Vietnam has enabled them to distribute packs of cooking oil, dry hand sanitiser, mouthwash, soap, masks, milk, rice and fish sauce to disabled people and older people who live on their own in the community.

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FROM SUPERHUMAN TO VULNERABLE?

t seems in the blink of an x-ray eye, disabled people have switched from being superhumans to being vulnerable. In the year when the superhumans were preparing to be wheeled out big time, with the 2020 Paralympics on the horizon, it’s been really scary how quickly our whole community has flipped to being considered too vulnerable to allow outside. For me it really highlights how vital language is to shaping how the public understand what being disabled really means. While I loathe both tropes, I find the concept of being vulnerable just for being who I am terrifying and damaging to all disabled people. If I asked you “do you feel vulnerable?” some would answer yes. I would then ask, “is that not because of the way you are treated, the lack of autonomy you feel, the lack of access in society or something else that isn’t actually to do with being you?” That’s the problem. Many disabled people feel vulnerable because they are made to feel that way. Even now, with COVID-19 meaning so many of us have been stuck in total isolation for months with many more ahead of us, I would question whether those members of our community are

“Many disabled people feel vulnerable because they are made to feel that way”

@MikScarlet

vulnerable. Susceptible to developing serious complications if they caught the virus sure, but vulnerable? It’s a word that has deeper connotations than just implying that you have health issues that mean an illness might lead you to become seriously ill, I feel it says something about your worth. It’s not the virus that makes you it, you just are it. It’s part of being disabled, of being you. It comes with the package. What’s most troubling to me is how all disabled people are suddenly vulnerable, even if we aren’t in any way more susceptible to COVID-19. Whether the shielding letter has dropped through your letter box or not, society now sees us as all the same, all weak, sickly and required to be locked away for our own good. As someone who is lucky enough to not have had the letter, and who is no more likely to develop COVID-19 than anyone else, or to have a worse outcome if I did, it’s been a real eye opener. I went from regularly being asked “are you a Paralympian?” (ha, no chance) to being confronted with “you shouldn’t be out, people like you should stay at home” every time I venture out for allotted exercise. Usually by others out exercising. The superhuman stereotype was annoying, but for the word disabled to become so firmly associated with vulnerability, I worry it will have a long-term negative impact on the drive for equality and inclusion. It’s too easy for the majority to let vulnerability to an illness turn into just plain vulnerable. Which then reinforces the concept that being disabled is to have a less worthy, less valid, less liveable existence. Then it’s not a lack of inclusion or access that makes our lives so difficult, it’s just part of who we are. How can

society improve that? It can’t, so why try? From there it’s not a huge jump to thinking the compassionate thing is to help us out of the misery that is being us. As a passionate campaigner against assisted suicide because of this kind of thinking, I cannot underestimate how much this scares me. The most frustrating thing is that disabled people could be showing society how to get out of all the crisis quicker and safer. Almost every physical access feature we have been fighting for would make it easier to socially distance. If businesses had set up working from home as reasonable adjustments for us, it would have been easier to get people working from home long-term successfully. Accessible public transport would be easier to use and stay two metres apart. We also know about recovery from illness, so we could support and guide all those who have beaten COVID-19 but who have a long road to recover ahead of them. As we see the lockdown lifting and things returning to normality, it’s time that society stopped seeing us as vulnerable and realised we are an essential resource of knowledge, experience and hope. We can help shine a light on a better tomorrow, maybe with our x-ray vision? Who’d have thought I’d miss the days when I get asked “ever won a medal mate?”

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he SmartDrive MX2+ is a revolutionary power assist solution that bridges the gap between manual wheelchairs and powered wheelchairs. When implemented the SmartDrive MX2+ provides manual wheelchair users with a boost of support to aid propulsion and helps reduce the risks of repetitive strain injuries, and helps the user conserve energy. Operated by a simple tap it will provide an instant extra boost to assist you up steep hills, over difficult terrain or on longer journeys. Combined with the PushTracker E2 wristband and SwitchControl, has made using the SmartDrive even easier. Using gesture-activated controls and activity tracking technology you can start the

SmartDrive with a simple tap of your wristband, no reaching or pushing required. The PushTracker app also delivers activity statistics and allows you to track distance, pushes and coast time in a clear format. This incredible piece of kit is transformative. It allows users to feel more independent and in control of their mobility, it supplements the energy that would normally be exerted, allowing users to conserve that energy for other tasks. It can open up a world of activity for any user. If you have a suitable manual wheelchair that the SmartDrive MX2+ can be fitted to, enter now for your chance to win! Find out more at permobil.com, call 01482 722 888 or email info@permobil.co.uk.

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Terms and conditions The prize is the SmartDrive MX2+ with PushTracker E2 and SwitchControl. Normal RRP of this prize is £4795. The winner will be contacted by Permobil to arrange safe face-to-face contact arrangements to allow for the handover and installation onto a suitable manual wheelchair. No transfer of prize or cash alternative can be offered. Entrants must 18 years or over. Only one entry per household. Entrants must be UK residents. The prize will be delivered to the winner’s address (must be a UK address only). Closing date for entries is 31 Jul 2020.

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Summer Must-haves SIZZLING

BY ROSALIND TULLOCH As summer arrives and we potentially look at getting out and about again, it is time to equip ourselves with some summer essentials. We have collated a wonderful wish list of must-have items that will have you looking and feeling amazing in the sunshine. It’s time to get over-excited about going outside again!

o. N~

Men’s ELITE Straw Trilby Hat

The ideal accessory for every man to look stylish and keep cool this summer. Ted Baker’s straw trilby hat is versatile and on trend, and will look great with any outfit. Hats are a perfect way to keep the sun off your face and avoids any sunburn to the top of your head. This hat will be a great addition to any summer wardrobe and will suit men of any age, a timeless classic, you can’t go wrong. Ted Baker | £39 o. N~

o. N~

This statement turquoise and gold chain is not only stylish and bold, it is also an incredibly practical way to look after your glasses or sunglasses. With our changeable summer weather, sunglasses can be put on and taken off more times in an hour than the number of sips you can take of a refreshing mojito, and then there is always the problem of where to put them so you don’t lose, scratch or break them. Enter beautiful sunglasses chain. Make a statement this summer and keep hold of your specs. Etsy | £29.33

WheelAir

A temperature control system designed to fit any wheelchair to keep you cool. The WheelAir is a clever and discreet piece of kit that allows self-regulation of your body temperature through an active airflow system, keeping you cool on the hottest of days. The clever concept is designed to fit all wheelchairs and it is a comfortable addition to any seat. No more feeling hot and sticky on those lovely summer days or when you are stuck in a venue with no air-conditioning. WheelAir | £650 (prices vary)

Turquoise Glasses Chain

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Frida Kahlo Hand Fan

Sometimes it is nice to hark back to a simpler time when all you needed was a handheld, pleated fan to keep you cool. The simple fan oozes a bit of old school glamour. We have found the perfect fan for all the Frida Kahlo fans out there. Bold, bright and beautifully made with an intricate carved handle, the silk style fabric displays a portrait of Frida Kahlo. Available in raspberry red and teal, and it only costs £2.50. This is our top summer must-have. George’s Whitstable Stores | £2.50

This must-have feminine, floaty, summer-perfect skirt has been created by disability-conscious fashion label Kintsugi Clothing. Named after Sally Darby, the creator of a network for disabled mums called Mums Like Us, this stunning skirt is thoughtfully designed with an elasticated waist, soft fabric and handy side pockets. This versatile skirt will take you through the summer season, from casual drinks with friends to a late summer wedding where you need to dress to impress. First time shoppers will also get a 10% discount for signing up. Kintsugi Clothing | £48

Funkin Cocktails

When is it a better time to enjoy a cocktail than in the sunshine? If we are still locked down, then there is even more reason to treat ourselves to a cheeky cocktail or two. Funkin Cocktails have created an incredible range of delicious ready-to-drink cocktails and cocktail mixes that you simply add your choice of spirit to, making a barquality cocktail in the comfort of your own home, with far less mess and in far less time. No more staring at the bar tender for 27 minutes as they perfect the burnt orange peel for your cosmo. The mixes are delicious so they make great mocktails too, just add ice and a garnish (if you are feeling fancy). Fun in the sun for everyone. Funkin Cocktails | £6 (prices vary)

o. N~

Sometimes we all need a little spritz throughout the day to freshen up and hydrate our skin, especially when it is hot or we are spending a lot of time in environments with airconditioning. The Only Good brand is a clear-conscience range created in New Zealand, it is vegan-friendly, 100% natural and palm oil free. Made with soothing chamomile, toning blue plum and hyaluronic acid, it is the perfect addition to your skincare regime or just as a refreshing and hydrating spray during the day. Holland & Barrett | £7.49

Sally Skirt

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Only Good Hydrating Facial Mist and Toner

Sun Bum SPF 50

Worried about burning when the heatwave comes? We have you covered, the Sun Bum range is gluten free and vegan-friendly, packed with antioxidants to enrich your skin and the SPF 50 will provide you with great UVA/ UVB protection. It is water-resistant for up to 80 minutes but should generally be reapplied after swimming or perspiring significantly. Available in most high street Boots stores or you can order it online straight to your door. Boots | £15.59

FRIO Jungle Five Wallet

If you need to carry insulin pens with you on those hot summer days, look no further than the FRIO wallet. Designed specifically to carry five insulin pens, this practical and pretty wallet will also keep them between the safe temperature range of 18-26°C for up to 45 hours. Handcrafted in the UK and available in a few different styles, we opted to showcase the jungle design as its beautiful green palm leaves are bang on trend for a stylish summer look. FRIO | £35.95

Madagascar Picnic Cooler

When restrictions are eased and we are all allowed to meet up with friends and family again, won’t it be lovely to plan a picnic in your local park. We will all probably be hankering after a change of scenery from our own homes, so why not start planning a picnic party at the park. Get everyone to bring a dish and you can bring the very beautiful Madagascar picnic cooler to keep drinks and food cool for up to six hours, and be the envy of everyone who casts their eyes on it. Wayfair | £17.99

o. N~

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Misunderstood THE

DISEASE

BY ROSALIND TULLOCH

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a neurological disease that affects around 265,000 people in the UK, and yet it is still surrounded by a cloud of misunderstanding. The first issue many people come across is the confusion between ME and CFS, are they the same or two different conditions? In short, they are the same, it just depends on the person giving your diagnosis and what term they use. Many organisations opt for using “ME, also known as CFS”, but the general consensus nowadays is to refer to it as ME/ CFS. Common misconceptions from the wider general public have been detrimental to the lives of the real people living with ME/CFS. It is not simply “feeling tired” as many uninformed individuals may muse, it is a recognised neurological disease that has debilitating symptoms that fluctuate continuously. A lack of education across the healthcare professions has also had a negative effect on the ME community. Leaving individuals feeling distressed, ignored and misunderstood. There is no simple diagnostic test for ME/CFS, which makes it very tricky to obtain an official diagnosis. ME/CFS presents itself differently within each individual and there is a long list of symptoms that can arise in patients. GPs will essentially have to diagnose by ruling out many other conditions and then are likely to use a list of indicators before confirming diagnosis. It can take years for some patients to receive a diagnosis.

The ME Association sets out seven key symptoms that are used to diagnose ME/CFS:

POST-EXERTIONAL MALAISE (PEM) This is the key diagnostic feature in patients with ME/ CFS. It refers to the way in which symptoms worsen after activity, effects of which can be delayed by 24-72 hours after activity

ACTIVITY- OR EXERCISEINDUCED MUSCLE FATIGUE Even after a small physical or mental exertion muscles can be in pain or tired

COGNITIVE DYSFUNCTION Short-term problems, difficulty concentrating, problems with word recall

PAIN Persistent and difficult to control, it can be muscular, rheumatic or neuropathic

SLEEP DISTURBANCE Insomnia, hypersomnia, vivid dreams and restless legs can all affect sleep quality

FLU-LIKE SYMPTOMS A general feeling of being unwell, accompanied by aches, a sore throat, sensitive glands and problems with temperature control

AUTONOMIC SYMPTOMS An inability to tolerate upright activity for any length of time, resulting in lightheadness, spatial disorientation, feeling faint and sweating after standing up. The NICE guidelines are currently being rewritten following pressure from ME organisations, charities and the wider ME community. This will hopefully help reduce diagnosis times and increase the understanding of ME/CFS in the medical profession and the wider public. It is important to raise awareness and educate the population on the facts and realities for people living with ME/CFS. By educating people on the debilitating effects that ME/CFS presents and sharing lived experiences, hopefully we can help to change society’s perceptions of ME/CFS and build a truer understanding of what it means to live with this disease.

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VOICES OF THE ME/ CFS COMMUNITY

Here we showcase a few ME bloggers who are sharing what it means to them to live with ME/CFS and what they would like you to know about their experience. Reading their blogs opens up an understanding to the disease and will squash those dangerous misconceptions many people have, so please follow them and share with others to help raise awareness and understanding.

It is insulting to me that people still buy into the inaccuracies surrounding ME

LIFE OF PIPPA Written by Pippa Stacey My name is Pippa, and I’ve had the symptoms of ME/ CFS since I was a teenager. It took four years for me to receive a clinical diagnosis, and the lack of funding for clinical research and specialist services continues to affect hundreds of thousands of people in this country alone. Life with ME/CFS can feel incredibly isolating at times, not least due to the stigma and lack of understanding about the true nature of the condition from the wider public. ME/CFS dictates every single decision I make, and every moment of my life, but I still feel hopeful for a more positive future. I hope that one day we’ll finally begin to see breakthroughs in biomedical research that paint a more accurate picture of the struggles we face. Follow Pippa Blog: lifeofpippa.co.uk Twitter: @lifeofpippa_ Instagram: @lifeofpippa Facebook: @lifeofpippablog

M.E. MYSELF AND I Written by Anna Redshaw My life was completely thrown off course when, at the age of 21, I had a very sudden and acute onset of what we soon found out was ME. Every single aspect of my life has been, and continues to be, impacted by the fact that my body no longer produces energy as it should. After almost a decade, I am still unable to work, even though flexible employment is available to me. For almost a decade, every single day has been dominated and restricted by ME. The stigma is incredibly damaging. It is insulting to me that people still buy into the inaccuracies surrounding ME, particularly with regards to tiredness. Would 265,000 in the UK alone, have given up the way of life they cherished just because of tiredness? It is absurd that people still think that when accurate information is now available. Follow Anna Blog: the-slow-lane.com Twitter: @theslowlane_ME Instagram: @tea_party_for_m.e Facebook: @theslowlaneME

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MUMMYING AND ME Written by Sophie Crowley ME has turned me into a person I could never have envisaged. I used to be fit and (relatively) healthy. Walking several miles at a time was a regular occurrence, even with a new-born baby in tow. At the start of my ME journey I refused to think this would affect me and continued to push myself, thinking I could just “think positively” through it. “Good vibes only” was a phrase thoroughly ingrained, my inner ableist refusing to accept the reality of a life-changing condition. Well, suffice to say, it didn’t work. I gradually got worse. 20 metres became my walking limit. I couldn’t cook. I couldn’t keep up with my then two-year-old. I realised at that point something drastically needed to change. I hired my first electric wheelchair and haven’t looked back. ME is a complex condition, characterised by one of its main symptoms: post-exertional malaise. In short, this means an exacerbation of symptoms following even the most of simple of exertions. Calling ME “chronic fatigue” is an insult to those who suffer. ME is not simply “being tired all the time”. It is living with flu-like symptoms and having to run a marathon daily. It destroys a person to a skeleton of who they once were. Alongside the typical symptoms of muscle pain, unrefreshing sleep, difficulties with concentration, sufferers have to advocate for themselves, in a world that is rife with misconceptions and mistreatment. I’ve personally come to terms with mine (and my family’s) life with ME but it still hurts. It hurts to have lost the career I worked so hard to build. It hurts to not be the mummy to my daughter I want to be. And most of all, it hurts to have lost the hobbies that I loved so dearly. But this is life now. Life on wheels is the way forward, and I won’t look back. Follow Sophie Blog: mummyingandme.com Twitter: @mummyingandme Instagram: @mummyingme Facebook: @mummyingandme

ME FOGGY DOG Run by Sally Callow

What is myalgic encephalomyelitis to me? I am now over 13 years into the second episode of my own ME journey. The first episode lasted around 18 months in my teens. It has stolen my hopes and dreams, I am only functioning at 50% of my pre-illness levels. I can only work for around 20 hrs a week, my body shuts down if I attempt more. My social life is very limited, friendships have been lost. There are only so many times you can cancel plans before exasperation sets in. Loneliness is a big aspect of ME. Who do you think is keeping us company when we are crashed on our beds, often in pain? Company is often futile when you are so depleted of energy that you can’t function. Talking is difficult and sleep is often calling. The one thing I want people to understand is that ME is not ‘just tiredness’. It’s a complex neurological condition, extreme exhaustion is just one of up to 60 symptoms. ME patients aren’t tired, our cells are tired. We are tired at a cellular level. Sally also runs an online social enterprise that provides online education courses to health professionals to educate them on ME/CFS – stripylightbulb.com. Follow Sally Advocacy and social enterprise: mefoggydog.org Twitter: @MEFoggyDog Instagram: @mefoggydog Facebook: @FoggyDog

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VINTAGE APPLE SCENTED CANDLE The scent of apple has been shown to reduce anxiety, something that many of us are experiencing in a heightened manner at the moment. Settle into your comfiest chair, put on some relaxing music, light your deliciously apple-scented candle and let the soothing begin. Prices from £5.95 rexlondon.com

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SELF-CARE JOURNAL This beautiful book is more than just a pretty cover. Filled with 172 pages of affirmations, exercises and prompts to initiate self-care to lift you, calm you and help you realise your potential. It is designed to guide you to create a self-love ritual by checking in on your emotional wellbeing and looking after yourself. Prices from £22 TheHappiEmpire – etsy.com

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VIBRATIME VIBRATING REMINDER WATCH A discreet device that can be used by both adults and children, this watch vibrates to remind the wearer to take medication at a certain time of day or to remind them to exercise or perform another task. It has eight vibrating alarm settings and the alarm will last for 20 seconds and can be cancelled at the touch of a button.

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BEURER EM29 KNEE AND ELBOW TENS MACHINE The EM29 is designed to provide drug free pain relief to the elbow or knee. Using TENS technology, it delivers a mild electrical current to stop pain in its tracks. It has four-hour effective treatment programmes that can have the intensity adjusted throughout and an automatic switch-off function. Prices from £49.99 argos.co.uk

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UNFORGETTABLE DIGITAL RADIO AND MUSIC PLAYER This simple device is designed to make playing music and listening to the radio easier for people living with dementia. It features large coloured buttons to make them easily recognisable and easy to operate. It also comes with a free USB stick that can hold thousands of songs – a great way to allow access to memorable songs. Prices from £74.99 dementia.livebetterwith.com

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INFLATABLE HAIR WASHING BASIN Designed to be used for washing a person’s hair in the comfort of their own bed. This inflatable, portable product allows an individual to have their hair washed comfortably, keeping them feeling fresh and clean even when they can’t make it to a bath or shower. Prices from £16.50 2020mobility.com

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Motability SCHEME SUMMER EVENTS CANCELLED The Motability Scheme has been closely monitoring the COVID-19 situation and the impact to its customers; the priority is to keep customers mobile, and to support them during these difficult times. In line with government guidance on social distancing, the Motability Scheme has sadly cancelled its programme of summer events, including The Big Event and regional One Big Day events. The safety and wellbeing of customers, employees and Scheme partners is the number one priority and in the current environment these busy events can’t take place in the same way. This means all the events listed below are now cancelled: The Big Event, NEC, Birmingham – Friday 3 and Saturday 4 July One Big Day, Eikon Exhibition Centre, Northern Ireland – Saturday 6 June One Big Day, Westpoint, Exeter – Saturday 25 July One Big Day Yorkshire Event Centre, Harrogate – Saturday 15 August One Big Day East of England Arena, Peterborough – Saturday 5 September One Big Day Royal Highland Centre, Edinburgh – Saturday 19 September

While this is disappointing news, hopefully a full programme of events will return in 2021 allowing customers to continue their journey with the Motability Scheme and discover the most suitable car, WAV, scooter or powered wheelchair for their needs. With this in mind, the Motability Scheme has also temporarily changed how it shares content on its social media channels and has begun theming some posts to bring positivity and light-hearted enjoyment each weekday. There will also be some chances to win prizes by getting involved too – keep an eye on the Facebook and Twitter channels for further updates. Please stay tuned to motability.co.uk and its social media channels for helpful advice and support from other customers who share their experiences. Throughout these changing times the Motability Scheme website is the best place to find the latest customer news and is updated regularly with any information important to customers. For more information, visit motability.co.uk or follow Motability on: Facebook: @Motability Twitter: @MotabilityOps.

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to those shielding and their carers.

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Unleash the Power of Your Imagination If you or a loved one is one of the more than 10 million people in Britain that cannot read printed books due to a print disability, you will understand what it feels like to be unfairly shut out from accessing something that most people take for granted. There are so many barriers in life and Calibre Audio passionately believes that accessing books should not be one of them.

EQUAL ACCESS FOR ALL Calibre Audio is a national charity lending free audiobooks to people that are print disabled. So whether you have a disability that affects holding a book or reading one, Calibre’s aim is to bring the joy of audiobooks to everyone. Because everyone, regardless of their personal or financial circumstances, deserves to immerse themselves in a good book and unleash the power of their imagination. Calibre’s members can choose to read whatever they wish from our ever-expanding and eclectic library in a format that works for them. Books can be borrowed online 24/7 with our download and streaming service, but there’s also a free postal service for delivering CDs and memory sticks if that suits you best. Your books, your choice.

THE AUDIOBOOK COLLECTION Calibre Audio pride themselves on their huge choice of unabridged books. The collection has everything from the perennial classics to the latest blockbusters; from essential page-turners to the more obscure. There is an impressive collection of nonfiction, from travel to politics and religion, as well as many set texts for English literature exams. And the collection is diverse too, with books on subjects such as black history and those for the LGBTQ community. Our members help shape our service, so that our library is a true reflection of the books that are important to you.

JOIN AND GET LISTENING It is free to join for everyone with a print disability. Books can be listened to on a mobile or tablet using the free download app or by streaming directly from the website. We also deliver our audiobooks on MP3 CD and memory stick using a free postal service so our members can choose to listen in a way that works for them. Visit calibreaudio.org.uk or call membership services on 01296 432 339 to join or for more information.

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Power THE

ACCESSIBILITY INFO

Carrie-Ann Lightley discusses the importance of accurate accessibility information, especially as we emerge out of lockdown

he threat posed by COVID-19 leaves many people worried about leaving their homes. For disabled people however, feeling anxious about going out is not a new thing, in some ways that worry has always been there for us. The fear of visiting a new place which may not actually be suitable for our individual accessibility needs – arrival anxiety – can be so consuming, that, in the days before coronavirus-induced isolation, many disabled people simply chose to stay at home, or to only visit places that they were already familiar with. In 2018, over 800 people responded to a survey titled Accessibility and You, from national disability organisation AccessAble. 98% of those surveyed said that they check accessibility information in advance of going to a new place. Just 14% of respondents said that they could find the information they needed, 80% found this information to be inaccurate, and 76% have not visited a venue because of a lack of accessibility information.

INDIVIDUAL NEEDS

98% of those surveyed said that they check accessibility information in advance of going to a new place

This rings true with my own experiences. I have cerebral palsy, I use a wheelchair, and I’m passionate about accessible travel. I write reviews of accessible accommodation and experiences, and can often spend days or even weeks researching trips, with mixed results. Earlier this year I channelled the frustration I felt about this into a blog post about why I think terms like “fully accessible” don’t help disabled people. My point in the blog post was that “fully accessible” is actually impossible, it doesn’t exist. Fully accessible to who? Just because two people have the same medical condition, or use the same type of mobility aid, doesn’t mean that their access needs are the same. Other unhelpful terms include “wheelchairfriendly” - friendly to exactly what kind of wheelchair? Manual, powered, small or large? If we are focussing on the suitability of a venue based on a particular mobility aid, why aren’t we taking into account the abilities of the person using that aid? Disabled people are just as individual as everyone else on the planet, and so are our wants and needs. In my opinion, the best accessibility takes the needs of as many different impairments as possible into account, and communicates that in a detailed, accurate way. Give us the information we need to decide if a place is suitable for us. Information about level access, Blue Badge parking and accessible toilets. Tell us about quiet spaces for people who have autism or anyone who struggles with too much stimulus. Tell us if your staff are trained in assisting people with dementia. Give us the detail on facilities for assistance dogs, hearing loops, visual smoke alarms, stoma friendly toilets.

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This information, and so much more, can be created and found using the right sources. AccessAble’s website and app have detailed, accurate, factual information to around 70,000 venues across the UK - shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals and more. Thousands of pieces of information for each venue, all thoroughly checked in person by trained surveyors who record facts, figures and photographs. A number of national and regional accessibility review websites and apps are available, for users to share their own experiences of accessing venues. These are especially useful for finding information on things like customer service, how welcoming places are to disabled customers, how easy it is to access Blue Badge parking, how much care has been taken to keep toilets free of clutter, and what to expect in terms of assistance available.

THE OTHER SIDE

Whatever our ‘new normal’ looks like, the importance of accessibility information cannot be forgotten

Like millions of people who are currently isolating to protect themselves due to disability or health conditions, I’m already thinking about what life, travel and days out will look like on the other side. Will I be able to safely get on a bus or a train with assistance? Will social distancing rules mean that places are less crowded, and so more accessible to me? I don’t have the answers, but I am certain that the provision of accessibility information will be even more important. After a lengthy period of isolation, when the time is right and safe for us to do so, many people with accessibility needs will be cautiously re-joining the outside world. What we absolutely don’t need at this point is inaccurate accessibility information, which will ruin much-anticipated trips. Imagine planning a dinner with family and friends for the first time in many months, only to arrive and find that the restaurant you were told was “fully accessible” actually has “just one step”; or anxiously preparing for your first commute back to

the workplace, to discover that the promised hearing loops in the train station ticket office aren’t actually working. These are fears that disabled people, carers and those with accessibility needs battle with daily, and they can only be magnified after so much time spent at home. Whatever our ‘new normal’ looks like, the importance of accessibility information cannot be forgotten. Businesses will need their share of the £249 billion that disabled people contribute to the UK economy every year more than ever – but we can only support them if this information is made available to us.

ABOUT CARRIE-ANN Carrie-Ann Lightley has worked in accessible tourism and marketing for 15 years. She has cerebral palsy and runs her own blog which mainly focuses on accessible travel, you can read this at carrieannlightley.com. You can follow Carrie-Ann on Twitter @CarrieALightley.

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Virtual VISITING The team at Euan’s Guide bring you some alternative options to keep you exploring during lockdown

hat do you do during a lockdown when your charity is all about helping make it easier for people to find great places to go? That was the question we started asking ourselves on 11 March when the World Health Organisation declared the outbreak of COVID-19 a pandemic. Two days later the team behind Euan’s Guide, the disabled access review website, were all working remotely for the foreseeable future and wondering how we could continue to support our users, disabled people and their support networks while we all stay at home.

It also opened our eyes to some brilliant online resources that had been there all along, as self-confessed adventurers and explorers it might come as no surprise that we were particularly drawn to the virtual tours of locations across the globe. Want to join us on a virtual UK tour? Here are just a few suggestions people have shared on the forum:

THE BRITISH MUSEUM, LONDON As one of London’s most popular museums there is an astonishing range of objects to explore when you visit the British Museum, or take a virtual tour online. In fact, they have multiple options allowing you to explore the museum and its objects online. To explore some of its galleries try ArtsAndCulture.google.com/partner/the-britishmuseum. For a timeline view of its virtual artefacts visit BritishMuseum.withgoogle.com. Interested in visiting when you can? The museum has some really positive reviews on Euan’s Guide with an overall rating of 4.3/5.

We quickly started to hear from our users that they were struggling with anxiety and actively trying to limit their news consumption and the amount of time they spent on social media. Our Ambassadors and team members were feeling it too, as our London Ambassador Tina put it: “As disabled people, we are often portrayed negatively or underrepresented by news outlets, and social media users can sometimes lack empathy or even be offensive towards us. This negativity can knock our confidence and impact on our emotional wellbeing.”

MAESHOWE, ORKNEY

We knew what we had to do, so quickly we set about developing a solution that would enable us all to stay connected, combat feelings of isolation and loneliness and share ways to keep busy and entertained from the comfort of your home. The end result was Euan’s Guide Forum, which we launched on Thursday 26 March. The forum seemed a natural solution, it gave disabled people the opportunity to come together in a welcoming, safe and positive space. It is an online space where you can go to escape the news, beat the boredom, ask for advice, find ideas or share what you are doing.

Learn more about one of the UK’s most important Neolithic sites and explore the chambered tomb in 3D with “Explore Maeshowe”, a mobile app available on both iOS and android formats. Through the app you can discover Norse graffiti from the 1100s and see how the entrance passage to the Maeshowe Tomb is perfectly aligned with the setting of the midwinter sun. This historic site has very limited accessibility due to the nature of the tomb, with an exceptionally narrow and low entrance passage. The app offers an alternative where you can still explore the site, albeit virtually.

Quickly we saw the content on the forum grow to cover a range of activities and interests. As a disabled access charity we’ve always been focussed on enabling people to find and share accessible things to do and the forum swiftly became an extension of this, with things being shared that were self-isolation and social-distancing appropriate. As well as covering all the events, shows and activities that moved online for a finite period of time, we heard about other new communities springing up, like The Staying Inn, a virtual pub headed up by “landlady” Dr Amy Kavanagh. Another space created for the disabled community to keep people in self-isolation connected with regular virtual events.

Search “Explore Maeshowe” on your app store to download the app for free.

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Image: © Historic Environment Scotland

THE GIANT’S CAUSEWAY, COUNTY ANTRIM Northern Ireland’s iconic geological wonder can be explored from the comfort of your home thanks to the National Trust’s virtual tours. Get up close and personal with the stunning 360-degree images. The National Trust has also given a great description of how to explore the images using your mouse, keyboard or the on-screen icons. The Giant’s Causeway has a 4.2 rating on Euan’s Guide with reviewers praising its visitor centre. To explore the virtual tours visit NationalTrust.org.uk/ giants-causeway/features/take-a-virtual-tour-of-thegiants-causeway

LOOKING AHEAD

Our primary focus has and always will be on helping people find accessible places to go. We hope to continue the forum as an extension of our review website. The great thing about it is that users can shape and mould it to be whatever they would like it to be. They could continue to use it as a place to share ideas of what to watch, listen to and do while at home. Or they could use it to ask questions before visiting somewhere new and share more about their experience at the places they visit. Like what public transport options had good levels of accessibility and other handy tips they wish they’d known before visiting. If you’d like to find out more or contribute to the review website visit EuansGuide.com. To access the forum visit EuansGuide.com/Forum.

It is an online space where you can go to escape the news, beat the boredom, ask for advice, find ideas or share what you are doing Image: ©National Trust Images_John Millar

THE ROMAN BATHS, BATH Travel back to Roman Britain and explore one of the best preserved Roman ruins in the world with the 3D model of Bath’s Roman Baths. If this virtual tour makes you want to visit in person then you’ll be pleased to hear that the Roman Baths have a 5-star review on Euan’s Guide thanks to well positioned lifts and ramps. Visit RomanBaths.co.uk/3d-model-roman-baths-andpump-room to explore the 3D model.

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arents, first off, we need to tell you that you are all doing amazingly well in these rather stressful and strange circumstances. Lockdown has taken its toll on all of us, and children and families are feeling the effects keenly in households across the UK.

Families with disabled children have found their lives turned upside down, support services reduced, connections and social circles cut off, and routines disrupted. The virtual reality we are currently living in is hard for adults to comprehend so we canâ&#x20AC;&#x2122;t imagine what kids are making of all of this. School closures are keeping our children from their education and their friends, and as parents it can be hard to come up with a new activity, learning resource, baking event, painting extravaganza or movie marathon every day to keep them amused and stimulated. With this in mind we have put together a feature with some online activities and ideas to hopefully help you and your family stay safe and sane through the continued restrictions. Our young voice this issue is Melissa Cassidy who shares her passion for drama and Dan White highlights the forgotten army of parent carers in this pandemic.

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Stay Home STAY SANE BY ROSALIND TULLOCH Parents throughout the UK have been locked away with their children now for over two months. No school, no nursery, no group outings, no trips to the park or the zoo, and strictly no interaction with any other human being â&#x20AC;&#x201C; unless you can safely social distance, and letâ&#x20AC;&#x2122;s be honest that can be very hard to do with younger children.

he pressure of home schooling, working from home, enduring sibling fall outs and trying to limit screen time (an impossible task in this circumstance) can really take its toll on parents. If we are all to emerge on the other side of this relatively unscathed, we need ideas of how to keep the kids amused and we need lots of them. We have compiled a few ideas that we have come across over the last few weeks that could offer a lifeline to some parents, or at the very least give you 20 minutes of peace to have a cup of tea. If you have any ideas of inclusive activities that you would like to share, let us know on Twitter @PosAbilityMag.

FLAMINGO CHICKS At the start of lockdown this amazing inclusive dance organisation was showcased through a few TV appearances and they went viral. Parents of disabled children throughout the country rejoiced in the discovery of Flamingo Chicks and the fun, inclusive and energetic classes they provide for children of all abilities. Katie Sparks is the genius behind these life-changing classes, spurred on by the lack of inclusive opportunities for her daughter Poppy who has cerebral palsy, she created Flamingo Chicks. The virtual classes are signed by a BSL interpreter and there is a great range to ensure everyone can get involved. Get your kids to get their dancing shoes on and have some fun at flamingochicks.org/athome.

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DANCESYNDROME We featured DanceSyndrome in our last issue as a fantastic example of inclusive dance lessons that are designed and led by instructors who have learning disabilities. The team at DanceSyndrome want dance to be accessible to everyone, even through these unusual times where we are all stuck at home. In response to the lockdown restrictions they have created online dance sessions that you can now take part in. The sessions are led by people with learning disabilities alongside a dance artist and they have introduced new junior classes to their timetable which take place at 3pm every Friday. Adult classes take place at 3pm every Wednesday. Take a look at how you can get your kids dancing by visiting dancesyndrome.co.uk/events.

FOR THE ASPIRING ARTIST

PLAYDOUGH

Looking for a creative outlet for your little ones? Take a look on YouTube at some of the drawing demonstrations on there, your kids will be learning how to draw a unicorn masterpiece in no time. A particular favourite in our household is the Art for Kids Hub channel on YouTube, where a father is teaching his kids how to draw different pictures with a step by step guide. He does the drawing line by line, taking it nice and slowly so little ones can keep up, but you can always pause the video to allow your child to take it at their own pace. It’s incredibly therapeutic and hugely satisfying to see the end result – even adults with little or no artistic talent (like me) will be amazed at what they create on the page! Check out Art for Kids Hub.

Sometimes you just need to come up with something that will keep the kids amused at the drop of a hat – with whatever you have in the cupboard, painting box or under your bed. Playdough is always a winner and is really easy to make. I use the BBC Good Food recipe: 8 tbsp plain flour 2 tbsp table salt 60ml warm water food colouring (optional) 1 tbsp vegetable oil Mix the dry ingredients together in a bowl and the wet ingredients in another bowl. Combine and mix together with a spoon. Dust a surface with some flour and knead the dough on there for a few minutes, until it feels stretchy and not too sticky – add more flour if needed to stop it sticking to the work surface.

NATURAL HISTORY MUSEUM It may be closed to the public but you can still discover the wonderful world that is enclosed in this beautiful building from your very own home. Take a virtual tour, participate in citizen science and access a whole host of learning resources online. They have a section called Dawnosaurs that has been created specifically for children with neurodiverse conditions. It includes a combination of activities from teaching children how to draw a dinosaur and meeting scientists and finding out about their work, to learning about these majestic giants through the Dino Directory. They hope to introduce new content to this area every 4-6 weeks and are actively trying to use this as a valuable SEND resource for disabled children while they are not in education. You can also download the free app – Naturenauts. This app is designed to get kids out in to nature to discover the plants and wildlife that is living right on their doorstep. Head out to hunt for different trees, or embark on a quest to identify as many plants as you can, these interactive games will keep your kids amused in the fresh air for hours.

MINDFULNESS It is such a strange time for all of us, but some children will be finding this period of uncertainty particularly overwhelming and out of their control. Practicing some mindfulness through breathing techniques and gratitude activities can help to calm fraught minds. Try making gratitude paperchains as a family by writing down something you are grateful for every day. Add these to your paperchain each day and watch as it grows into a long line of things you find yourself thankful for. Alternatively, you can use an old glass jar (upcycle an empty jar of pasta sauce or similar) and add your thankful messages into this until it is bursting with gratitude.

Visit nhm.ac.uk for more information.

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Kids’ PRODUCTS

WORRY EATERS These cuddly little companions could come in very handy during these worrying times. Children are very aware of the changes going on around them and this can weigh heavily on young minds. Worry Eaters are a great way to take away those fears, simply ask your child to write or draw their worry on a piece of paper and then pop it into the mouth and zip it away. amazon.co.uk

Prices from

GRAVITY KIDS WEIGHTED BLANKET

£18

These high-quality weighted blankets are soft and snuggly, the perfect calming companion for your little ones at bedtime. Designed to aid sleep by relaxing the body and nervous system, this plush, full-size blanket is ideal for children who struggle to get a good night’s sleep. It comes in varying sizes, weight and colour options. gravityblankets.co.uk

Prices from

£119

FINE MOTOR TOOLS Prices from

£8.50

The Helping Hands fine motor tool set consists of gator grabber tweezers, handy scoopers, twisty droppers and squeezy tweezers. The ideal set to help little hands practice fine motor skills and practice those skills with a fun colourful set in play settings at home. 0845 241 0484 learningresources.co.uk

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SIMPL DIMPL This bright, colourful keyring calms fidgety fingers with its two silicone spots. Prod, poke, push and pop the little buttons on this keyring to keep restless hands at work and to aid in concentration. Available in four colour combinations, the keyring is the perfect little toy to carry with you in your pocket or bag. 0208 953 4484 happypuzzle.co.uk

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£3.99

HIGHWAYKICK 1 SCOOTER This innovative 2-in-1 scooter bike is a fantastic and fun introduction to getting around on your first set of wheels. The seat provides a safe and stable spot for your little racer to scoot around and the rollover protection at the front prevents it from toppling over. It features a non-slip footpad and rear brake, and it is designed to grow with your child. kidly.co.uk

Prices from

£100

GEMINO 30 S ROLLATOR This lightweight paediatric rollator is designed to enhance children’s mobility and independence. It is stable, safe, will aid gait training and it has a handy bag on the front to store things in. Available in a variety of colours to complement your child’s style, it also folds down to a compact size for travel. sunrisemedical.eu

Prices available on request

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act on screen excite me, I know my disability will definitely create some barriers, but those barriers are things I’m going to have to face with confidence and positivity.

FUTURE VOICES Each issue we will be shining a light on a young disabled person who is blazing their own trail. Whether that be campaigning for access, giving up their time to help their community, achieving success in the sporting or arts arena, or educating their peers on disability.

Acting is a very difficult thing to get into when your disabled because the media tend to not represent minorities and even if there’s a role for someone disabled, directors won’t be looking for someone with a speech impairment. I think the media definitely needs to change and stop looking for these stereotypical disabled people because, honestly, they don’t exist. We shouldn’t be discouraged to be out there because having people exposed to all disabilities makes a huge difference to how we are seen and takes away some of the social barriers disabled people face.

MELISSA CASSIDY

y name is Melissa Cassidy, I live in Glasgow, I am 14-years-old and I have quadraplegic cerebral palsy.

I’ve always had a love for drama and performance, ever since I was little I’ve craved attention. I never saw my dysarthric speech as a barrier, all through primary school I was loud and outspoken, but when I moved into secondary school, things changed. My drama teacher in first year was lovely but she didn’t have much experience of disability. When I would perform I would look at her and see concern in her eyes. It wasn’t her fault that she couldn’t understand me but I felt disheartened. I became very conscious of my speech, the way it sounded and the way people reacted to it. I would dread having drama because I was so aware of the silent reactions I would receive and the way people seemed very cautious when they gave my performance feedback. Obviously, no one ever said anything about my speech but I could tell what people were thinking. In my second year of secondary school, I had a new drama teacher. His teaching methods were slightly different. I received a slightly more positive reaction to my performances and my confidence grew. By the time half term came around I became less conscious of my voice and was able to really focus on acting. My class was also used to me by then and I wasn’t nervous anymore. For the first time since I was younger I loved the attention and performing. When the time came to choose my school subjects I knew I wanted to continue with drama. In fact, I knew I really wanted to act as a career. My big ambitions to write and

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& CE Y VI ER ER IV S EL N D IO K T U LEC L CO

Adapted vehicles you can rent About us

Mobility Vehicle Hire Ltd is a daily rental company speciﬁcally servicing the specialist requirements of disabled drivers and passengers throughout the United Kingdom and are established suppliers of speciﬁcally adapted vehicles to cater for the needs of disabled drivers and passengers. Vehicles can be hired on a daily, weekly or monthly basis, and they also provide a door-to-door delivery and collection service. The company has a large portfolio of wheelchair accessible vehicles (WAVs) and adapted cars which are sure to exceed your expectations.

New Showroom

The accessible vehicle specialists saw the opening of their bespoke new premises in Birmingham, located close to junction 7 of the M6, opened by Simon Weston CBE, who was voted one of the Nation’s Favourite Heroes and honoured as one of the top 100 Welsh Heroes, stemming from his charitable work. The new premises are wheelchair accessible, with accessible parking, and features a stunning new demonstration room for customers to view and try any of the vehicles Mobility Vehicle Hire has in the showroom. Simon was joined by the Mayor of Walsall, Marco Longhi, and Graham Footer, chief executive of Disabled Motoring UK. Vehicles on offer sport many adaptations, including infra-red controls, left foot accelerator, boot mounted scooter hoists, push pull hand controls, drive from and ride upfront vehicles, extended pedals and much more. In addition, Mobility Vehicle Hire can provide all sizes of WAVs, with either a rear ramp or an electric tail lift on larger vehicles. All Mobility Vehicle Hire rental vehicles are provided with a full 24-hour breakdown assistance service in the UK. The company will endeavour to beat any other quote you may receive and provide a high level of service throughout your hire.

Try Before You Buy

Mobility Vehicle Hire also provides PIP transition support: if you have been unsuccessful with your transition from DLA to PIP, the company can offer you a vehicle of your choice, included in a bespoke package tailored for your requirements. They can supply you with a short-term rental whilst you may want to go through your appeal process or alternatively, a long-term solution with a vehicle of your choice. The company also offers a Try Before You Buy scheme, which allows customers to hire a vehicle for three days, and, if it meets their needs, take out a long-term lease on it. The customer’s three-day lease will then be refunded from the on-going cost, providing a no obligation opportunity to ensure the vehicle is right for the customer.

Call 0845 293 2799 or email customersupport@specialistvehiclerental.co.uk to arrange a visit.

Visit Mobility Vehicle Hire’s brand new premises at Kudhail House, 238 Birmingham Road, Great Barr, Birmingham B43 7AH

DAN WHITE

testing. Great, but like the woefully underpaid NHS staff, we could do with more. Coronavirus has shaken capitalism to its shaky foundations once again. The carers allowance rose by one pound recently to £67.25 per week, while the rugby league received a £16million bailout. Can others not sense our frustration? The sport won’t be putting teabag purchases on the credit card while it gets the financial support that we crave to just exist and to be blunt, stay alive.

COLUMNIST

Follow Dan on Twitter @DeptOfAbility Dan White, creator of the amazing Department of Ability superheroes and dad to Emily, who is 12 years old and has spina bifida, is a regular face in PosAbility, as he shares his experiences of life as a family with a disabled child.

I, myself, have spent much of the lockdown trying to juggle care for both my high-risk daughter and my wife, while highlighting the situations of parents and young carers. I have bounced around the media talking myself hoarse about our collective situations. The final proof of our apparent invisibility being when I directed a question to Helen Whatley MP about home carers in our corona confinement and was blissfully ignored. It seems if the system doesn’t acknowledge us, there is no problem to solve. An unethical QED.

A FORGOTTEN ARMY

oronavirus has enforced upon carers even more isolation than ever. Our children who would have had the joy of attending SEN or mainstream school are now, mostly imprisoned with us who ourselves are either furloughed, fearful, or both. We are now ordered to remain at home, indoors with our “vulnerable” kin accepting food parcels, but now not accepting the external support we once had. We are adjusting to complete lockdown and appearing to be told by the government “here’s a badge and some free tinned peaches, see you when it’s over.” Coronavirus in a strange way should be an ideal time to have the country finally hear and see what we do for our loved ones 24 hours a day. However, the opportunity for social awareness of our constant battles with the system and our mental health, has been passed over again as it often is with the government. They seem determined to gloss over the cruel social care cuts now exacerbating our lockdowns with bluff, bluster, and billionaire bailouts. Our daily lives are

driven by the absolute want to sustain and assist important lives, but now in this COVID-19 era they are also driven by fear and a worrying truth of being seemingly acceptable collateral damage by the state. Care workers who populate the NHS (which is our children’s lifeline) are rightly lauded, but we still wait for our recognition, not for vanities’ sake, but for moral and social conscience’s sake. We are incommunicado more than ever in COVID UK. Parent carers like us are not motivated by media glory, but a hefty nod to our multiple skills would show that we are not a forgotten army but part of a great, incredible care machine. It would give us reassurance that we are part of the supposed 2020 “all in this together” mantra, that as the country retreats we stand and push onwards, to protect what really matters; life. It would show that as lockdown bites, our already perilous situations are exacerbated by isolation and we need help now more than ever.

We do not want a care badge or another carer phoneline. Carers number around 6.5million in the UK and that means an awful lot of families being kept from sinking a corona-filled but incredible NHS. We simply want better help, better financial support, and apologies for successive missed opportunities to say “we appreciate you so let’s better equip you”. Equality and maximum support for all carers in COVID-19, that’s what you call “all in this together”.

Unpaid carers are now apparently (as I write) on the government list of essential workers and prioritised for

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THE RISE OF THE

PATIENT ADVOCATE BY JENNA FARMER Jenna explores what it takes to become a patient advocate and how you can make a living from it Chances are that if you’re looking to buy a new outfit or need some recipe inspiration, you’ll head to the internet. After all, most of us look to influencers or online experts to guide us through life: whether it’s tips on how to bake the perfect loaf of bread or an everyday make-up tutorial. However, some use their online presence to chronicle an altogether different reality. Patient advocates are those who use their platform to share their daily lives of living with chronic illness or disability. They shine a spotlight on all the different aspects of their daily lives: whether that’s accessible travel, tips for changing a stoma bag or a Q&A about their condition and (where relevant) treatment plan. Such is the demand for these advocates, both from their audience and healthcare brands who work with them, that some people are managing to turn this role into a full-time career. But how does patient advocacy work and how can you become one?

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...how does patient advocacy work and how can you become one?

THE POWER OF PATIENT INSIGHTS You don’t necessarily need a huge following to become a patient advocate. After all, your most valuable commodity is your voice, which comes from many years of living with a condition or disability. This insight is extremely valuable for brands; who work with patient advocates in market research to help improve their products and messaging. Sahara Fleetwood-Beresford lives with inflammatory bowel disease (IBD) and works as a freelance ‘IBD expert’ through the company Merakoi - an organisation who connects brands with patient experts. “I’ve been working on a project with a pharma company for a year. The first phase was helping them identify the unmet needs of IBD patients and coming up with ideas for solutions that might fill that gap.” Sahara is paid for her freelance role and joins in with all kinds of business activities, including in-person workshops as well as sharing insights via voice clips that are used in internal meetings. “My work is ensuring that the core story and messaging will resonate with the community. They’re very good in the sense that if I say ‘I don’t think that’s a good idea’ they listen to my input.” Not only is this role a way to make a living but it can also potentially shape healthcare and the treatment other patients receive.

CREATING CONTENT

Other advocates help brands with their content by using their writing and social media skills to help write content for healthcare companies’ websites. Pippa Stacey has ME and writes a monthly column for a mobility brand as well as having her own blog (lifeofpippa. co.uk). Her most popular post being a feature entitled ‘Powerchairs Aren’t Just for Elderly People’ which features lots of chronic illness influencers and their powerchairs. This is an ideal way for advocates to use their creative writing skills and it ensures healthcare brands have plenty of authentic content.

THE POWER OF INSTAGRAM

Finally, for advocates who do have a larger platform, making a living through Instagram and blog advertisements is another option. Pippa also works with brands to run advertisements on her Instagram account (@lifeofpippa) and believes influencers with disabilities and chronic conditions offer a new way of marketing for many brands, as she explains: “Healthcare brands offer brilliant services and working with more diverse influencers can offer an ideal tool for opening up a brand’s marketability to a much wider demographic.” Georgina Grogan, who has chronic back pain and chronic fatigue syndrome, agrees: “I started a blog seven years ago and it’s completely my life now! I’m tired and in pain all day long but being my own boss through my blog means that I can still make a living in those hours where I feel awake enough to get things done!” Georgina works with relevant brands on her blog shemightbeloved.com and on Instagram @georginagrogan_, where she has an impressive 32,000 followers. She explains that sponsored content can also really benefit her audience. “I worked with a water supplier to promote the discount that can be applied for by those with chronic illnesses; lots of my readers had never heard of it and were so grateful! Brands are reaching a wider audience than if they were to work with abled people, as people follow people who represent them,” she adds.

TURNING CONTENT INTO CASH

...influencers with disabilities and chronic conditions offer a new way of marketing for many brands

So now you know what a patient advocate is, how can you make a living from it? Here’s our top tips... Lots of companies specialise in connecting patients with healthcare companies for clinical trials and market research. These include WEGO, Merakoi and Health Union (who also regularly recruit patients with different health conditions to write for them). Approach small businesses who cater for those with your condition and see if they’d be interested in partnering. This might be writing for their site, a 1-2-1 chat or a whole range of other possibilities. Work closely with relevant charities. It might not be paid but it’s a great way to get experience. Start your own blog to talk about life with your condition. Once your blog is more established there’s several ways to earn from it: such as advertisements or self-publishing your own book. Looking to get started? Pippa Stacey advises to think about what makes you unique and states on her website: “Think about what the world can learn from your experiences; your own unique story is what lends power to the points you’re making.”

ABOUT JENNA

Jenna is a freelance journalist who lives with Crohn’s disease. She also runs chronicillnessbloggers.com, which is a community for bloggers with disabilities and chronic illnesses. You can follow her on Twitter @jennafarmeruk.

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Podium Place BY ROSALIND TULLOCH

he unavoidable shift to home working that the country has experienced over the last few weeks, has had a positive effect on the way employers and businesses see flexible working situations. It has firmly cemented that working from home is a viable option, that working flexible hours is a realistic request and that the need for office-based work is not as important as they once thought.

This in turn opens up a much wider talent pool of potential employees to businesses, and allows employers to focus more on a candidateâ&#x20AC;&#x2122;s skill set, rather than getting hung up on where they need to work from or what hours they need to stick to. Liz Johnson is the former Paralympic champion behind the disability consultancy The Ability People (TAP). TAP works with companies in the UK to improve the recruitment and retention of disabled talent in order to close the disability employment gap and to educate workforces on inclusivity to help change the culture in the workplace. Liz has now launched a new jobs platform to empower the disabled community and connect disabled workers to freelance job opportunities. The new website, called Podium, is the UKâ&#x20AC;&#x2122;s first jobs marketplace designed to cater

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for disabled talent. The platform is unique, free to use and open for freelancers to create profiles, helping to showcase the untapped skill sets of the disabled workforce all in one place. When a disabled freelancer creates their profile they will also be asked to nominate a charity or community organisation that will receive 20% of any fees accrued through the site. The Podium marketplace allows companies to advertise projects and search for professionals within the community of disabled freelancers who can take on the work. Likewise, freelancers can search for roles which suit their needs and set their rates through bespoke profiles. They can also contact employers directly about available roles, providing increased agency in the job hunting process.

Liz, Paralympian and founder of TAP, comments: “The mass transition to remote working has finally killed off many of the arguments that have long prevented disabled people from securing meaningful paid work. Namely that businesses couldn’t accommodate someone with a different working style or workplace requirements that deviated from the norm. “Working remotely has challenged the status quo. Businesses are fundamentally rethinking how they hire and how they operate. It’s proven that, if the majority depend on it, it’s quite possible to cater for a workforce with different needs. Now that we’re beginning to transition out of lockdown, it’s essential that we use this as an opportunity to tackle our shocking track record of disability employment in the UK and embrace a new approach to hiring disabled talent. That’s why we’re launching Podium. “The disabled community is teeming with untapped talent and skill - all that’s left is to bring it to light. That’s where Podium comes in: connecting hiring managers and disabled freelancers via one, easy to use platform. We believe it has the opportunity to transform how disabled people find jobs and will enable our economy to benefit from the immense contribution this community is poised to provide.”

Adil Ghani, consultant at TAP and disability campaigner, comments: “Podium puts the power back into the hands of disabled people when it comes to job hunting. Too often in the past I’ve found that the onus is on us to try to accommodate the employer’s needs, rather than the other way around. What’s so important about this platform is that it recognises the value disabled workers have to offer. It’s not charity, it’s business, and it allows disabled freelancers to work whenever, wherever and however we need to.”

The disabled community is teeming with untapped talent and skill - all that’s left is to bring it to light. That’s where Podium comes in

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CLASSIFIED

Exceptional fully accessible purpose built 4 star self catering holiday accommodation in beautiful rural Dorset. Superbly equipped comfortable and tastefully furnished cottages, heated indoor splash pool(seasonal), recreation room and stunning views from the guest garden.

Two wheelchair accessible cottages with wheel in wetrooms and free use of a wide range of mobility aids. Ideally located for touring the whole county.

Free Wifi. Wet rooms. Electric profiling beds, Zip & Link beds Mobile hoist, Shower chairs and other specialist equipment 10% discount on remaining available weeks in 2020.

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Kidz to Adultz Exhibitions Free events organised by Disabled Living

100+ Exhibitors

Who attends our events?

Children & young adults with disabilities and additional needs, their parents, carers and all the professionals who support them.

Where can you find us? 5 events throughout the year in: Farnborough, Newport (Wales), Manchester, Coventry & Edinburgh.

Register for your FREE tickets at: www.kidzexhibitions.co.uk Email: info@disabledliving.co.uk Tel: 0161 607 8200 Facebook & Twitter @KidztoAdultz, Instagram @kidztoadultz_exhibitions

Kidz to Adultz is a trademark registered to Disabled Living. Charity no: 224742

CPD Seminars

Fun & Features

Accessible Parking

Dream JOB GET THAT

WORDS BY JANE HATTON

GAINING ACCESS TO WORK This issue Jane Hatton explores what support is available from Access to Work

e know that disabled people make premium employees. As well as having the same diversity of skills and talents that the rest of the population has, we are also skilled at finding our way through barriers that we face on a daily basis. This makes us, generally speaking, great at creative problem-solving. However, fighting the barriers we may face at work takes more energy than is necessary, and of course some barriers can’t be removed purely by our own ingenuity. Access to Work can help with relevant support to help us focus our energies on being productive rather than solving avoidable problems. It is a publicly funded employment support programme that aims to help more disabled people start or stay in work. It can provide practical and financial support for disabled people or those who have a long term physical or mental health condition. Support can be provided if you need help or adaptations beyond reasonable adjustments. It has been described as the government’s “best kept secret”, as not many people (including employers) know about it. Knowing what support you might get from Access to Work can help you explain to a prospective employer that any adjustments you may need could be paid for, in part or in full, reassuring the employer that you won’t be too expensive to hire. Access to Work can help you by providing support with: Aids or equipment in the workplace – this could include assistive technology (such as dictation software or a larger monitor)

Adapting equipment to make it easier for you to use – for example, a heightadjustable desk or ergonomic chair Travel to work – if you are unable to drive and public transport is inaccessible for you, this could include taxi fares or a driver Travel in work – again, if you need to travel between different sites as part of your role, this could include taxi fares or a driver Communication support at interviews – for example, a BSL interpreter A wide variety of support workers – this could include someone to take notes at meetings or training events, a job coach to help you learn new tasks, someone to carry equipment around, etc. The Mental Health Support Service - you may be offered, for example, assistance to develop a support plan. This may include steps to support you remaining in or returning to work and suggestions for reasonable adjustments in the workplace Disability awareness training for your colleagues The cost of moving your equipment if you change location or job. Sometimes support may be a one-off payment (for example, a height-adjustable desk for someone with spinal problems), or an on-going payment (for example, a driver for someone with a sight impairment or mobility problem). Access to Work is designed to help people over 16 who have an impairment or health condition that impacts on their ability to do the job. It includes both employment and self-employment. It can be helpful to talk to Access to Work about your support needs. It may be they can advise you on what will be helpful. There may be assistive technology that you are unaware of for example, or solutions they have found to remove barriers for other employees with similar challenges. They can send out experts (eg. in ergonomics or technology) to discuss with you and your employer about what might help the most. You can find out more information by calling 0800 121 7479 (textphone: 0800 121 7579), or visiting gov.uk/access-to-work/ overview. For further tips, and jobs from inclusive employers who are looking to attract more disabled candidates, have a look on the Evenbreak website: evenbreak.co.uk.

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MAGAZINE TRAVEL REVIEWS

Expert travel reviews to help you make the best choice when booking your holiday.

PRODUCTS

An innovative mix of products to support you in everyday living.

EMPLOYMENT AND EDUCATION Regular columns and features on getting your dream job. Providing advice on CVs, interview tips and much more.

PERSONAL STORIES

Inspiring tales from our readers.

COMPETITIONS

Exclusive competitions that give you the chance to win dream holidays, amazing products and once in a lifetime experiences.

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HEALTH AND FITNESS

We look at sports and activities available for you to get involved in to help you lead a healthy lifestyle.

DAYS OUT

Great ideas for the whole family to enjoy.

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PosAbility – June / July 2020

Articles inside

THE RISE OF THE PATIENT ADVOCATE

PODIUM PLACE

P R O J E C T I S O L A T I O N

THE POWER OF ACCESSIBILITY INFO