PosAbility – Oct / Nov 2020

OCT/NOV 2020

MAGAZINE STUDENT SURVIVAL

ST R IKE A P OSE

HALLOWEEN

We explore the benefits of the new way of learning

Meet the new modelling agency championing diversity

How to keep the spooky fun in your home this year

To arrange a test drive please visit www.fiat.co.uk/motability

THE FIAT FAMILY AVAILABLE ON THE MOTABILITY SCHEME* Official Fuel consumption figures for the Fiat range (including mild hybrid) in mpg (l/100km): Combined 34 (8.3) - 53.3 (5.3). CO2 emissions 192 119 g/km. Fuel consumption and CO2 figures are provided for comparative purposes only and 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. Only compare fuel consumption and CO2 figures with other cars tested to the same technical procedure. *Fiat family available on the Motability scheme. Vehicles only available through Motability accredited participating Fiat retailers and are not available in conjunction with any other offer. Subject to orders being placed between 1st October and 31st December 2020. Terms & Conditions apply. Offer may be varied or withdrawn at any time.

Welcome OCT/NOV 20

if we have to sit at other ends of the table for Christmas dinner. Keeping kids excited for Halloween without the usual fun of trick or treating (or guising in my case as I firmly make my kids perform for a treat), may seem hard, but we have some great ideas for smashing Halloween at home this year, find these on page 51.

Ros EDITOR

I

t would be easy to feel disheartened as we slip back into the now familiar boundaries of lockdown life. Even a semilocked down winter is going to feel challenging as the weather takes its inevitable turn, the rain ensues, and the cold forces us back indoors for our health and comfort.

Kids (and many adults) are mourning the loss of Halloween this year, and who knows what will happen with Christmas? Let’s hope we can all still be with the ones closest to us – even

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We also focus on some essentials for surviving the winter months, from nutrition to heated scarves, we will keep you healthy and happy over the cold spell.

Our stunning cover this issue is courtesy of Able Model Management, a new, diverse talent agency focusing on showcasing a diverse range of models. Find out more from the founder James Marshall-Baquedano, on page 16.

You will find instalments from our wonderful columnists and all the regular features too. If you would like to get involved with PosAbility or if there is anything you would like us to cover, please don’t hesitate to get in touch at ros@2apublishing.co.uk.

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

CONTRIBUTORS

Sam Renke, Mik Scarlet, Dan White, Jane Hatton, CarrieAnn Lightley, Pippa Stacey, Mary Cole, James MarshallBaquedano, Ross Lannon, Zan Godden

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 OCT/NOV 2020

MAGAZINE STUDENT SURVIVAL

S TRIKE A PO S E

HALLOWEEN

We explore the benefits of the new way of learning

Meet the new modelling agency championing diversity

How to keep the spooky fun in your home this year

Until next time, stay safe.

Follow us on Twitter @ PosAbilityMag

SUBSCRIBE TODAY...

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

Cover image courtesy of Able Model Management Model: Doaa Shayea Photographer: Nicholas Moylan

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OCT/NOV 2020 | ISSUE 57 LK AB

15 UNLEARNING Sam Renke explores the importance of intersectional activism

16 SELLING MY SCARS James Marshall-Baquedano explains what prompted him to start Able Model Management

20 WINTER WARMERS As the seasons change, so do the nutritious benefits we need from our food

23 WHEELS OF CHANGE Mik Scarlet writes on the importance of including disabled people in the design process of mobility equipment

25 SHOP SMALL Five fantastic small businesses owned and operated by disabled people

29 TEENAGE LOCKDOWN Mary Cole shares the challenges that come with losing routine during lockdown with her teenage son

32 ESSENTIAL AIDS Home comforts to see you through a semi-locked down winter

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News, stories, and updates

35 SURVIVOR SUPPORT

ET

09 FYI

Where to find the right support if you have experienced a brain or spinal cord injury

38 A LIFE ON WHEELS Meet Ross Lannon, a Cornwall-based disability and lifestyle blogger

40 HOT STUFF The latest must-have products

43 AUTUMN ADVENTURES Carrie-Ann Lightley takes us on a journey to Perthshire, Scotland

46 LET’S TALK ABOUT TOILETS Euan’s Guide highlights the importance of Red Cord Cards and Changing Places

49 KIDS’ CORNER This issue we look into Halloween at home, kids’ products, and contributions from Dan White and Zan Godden

60 A NEW WAY OF LEARNING Pippa Stacey asks why it’s taken a pandemic to make remote learning a reasonable adjustment

63 GET THAT DREAM JOB Jane Hatton takes us through the process of planning your career in an uncertain world

UT TOIL

LET’

O

S

TA

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Model – Jasmine Rankin Photographer – Nicholas Moylan

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The Eclipse Cross Design SE with no Advance Payment.

Everything you need for a smooth ride.

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

Fuel economy and CO₂ results for the Mitsubishi Eclipse Cross Design SE Manual / MPG (l/100km) (combined): 36.2 (7.8) / CO₂ emissions: 177 g/km.

The Motability Contract Hire Scheme is administered by Motability Operations PLC (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate of the Mobility Component of the Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment which will be taken in lieu of the four weekly rental. No advance payment on the Mitsubishi Eclipse Cross Design SE Manual. Terms and Conditions apply. Please ask the dealer for full details. Rentals valid for applications placed between 1st October and 31st December 2020. 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.

FOR YOUR INFORMATION News and stories from around the world

BBS YOUTH ADVISORY PANEL

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pplications for the British Blind Sport (BBS) Youth Advisory Panel are now open.

BBS are looking for up to 12 young people aged 16 - 25 living with a visual impairment (VI) to form this exciting new sports panel.

The Youth Advisory Panel (YAP) will act as a voice for young people living with a VI to become more involved in sport in the UK. The panel members will support BBS with policy and project development and advise on issues relating to young people living with a VI in sport and physical activity.

As this project develops, BBS are hoping that the YAP will also be able to advise and influence a range of sports organisations on how they can best support VI volunteers and participants, contributing to the inclusivity and accessibility of the sport sector nationwide.

This will be a fantastic opportunity for young people living with a VI to truly be heard and have a positive and long lasting impact on the wider sporting community.

The YAP will be expected to meet up to six times a year (in person, if it is possible with the current pandemic) alongside virtual catch up meetings and a few hours dedicated each month, as needed, for project work.

The frequency of the virtual catch up meetings will be decided by the panel at their first meeting.

Applications for the YAP will close on 16 October and applicants will then be shortlisted and invited to a selection day on Saturday 7 November. The selection day will consist of team building work and some set tasks which will be similar to what is expected of panel members should they become part of the YAP. This day is likely to be held virtually, depending on the current climate.

The first YAP meeting will take place on Tuesday 24 November, virtually.

To apply for a place on the panel visit britishblindsport.org.uk/bbs-youthadvisory-panel.

WE BELONG

D

isability Rights UK (DRUK) have launched a campaign called We Belong to help feed the views and thoughts of disabled people back to the government to help shape policy.

DRUK want to hear from as many disabled people as possible about the issues that affect your life and the changes you would like to see implemented. You can share your views by emailing webelong@ disabilityrightsuk.org or you can send an audio file of you talking about the things that matter to you.

Online discussions will be held covering a variety of different topics, bringing together a diverse group of disabled people. These discussions will be held throughout October and they will be guided by what you want to discuss.

DRUK’s Kamran Mallick said: “It’s so important that we get our views directly to the heart of government so that we get a strategy that truly focuses on the things that we, as disabled people, know to be the most important.”

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CALL FOR AMAZON TO REMOVE T-SHIRTS

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orty-three Down’s syndrome and learning-disability groups, including the Down’s syndrome Association and Mencap, have published an open letter calling on Amazon to take steps to halt, once and for all, the sale of t-shirts on their platform which carry messages, such as “Let’s make Down syndrome extinct”, referring to this as hate crime.

The letter stated: “What we would like now is for you to find a way to stop these items being listed for sale on any Amazon platforms, and destroy any stock you may hold of these items for Prime delivery. Hate crime is a serious issue and is on the rise against people with Learning disabilities. We want to see companies who sell items on Amazon that incite hate speech against any minorities banned from ever selling on

Amazon again.

“We hope to see Amazon helping the Down’s syndrome community stand against hate crime. We would like to work with you on this and sincerely hope we hear from you soon regarding the matter of tightening up your policies, banning sellers who post these items and most importantly stopping them ever getting to the point of sale again. Thank you in advance for your support.”

Cristina Bowman of the Diff-Ability Cumbrian Community group organised a change.org petition to alert Amazon to the problem which has already amassed over 70,000 signatures.

Supporters have been campaigning because they believe that it’s only right that as well as being responsive to complaints, Amazon has to take preventative action.

The open letter to Amazon, calls on the commercial giant to take action to recognise that diversity should extend to those with a learning disability, ensuring that they are respected as a part of an inclusive society. To include this group in the Amazon discrimination policy would go some way to addressing that problem.

GETTING AHEAD

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new magazine called Get Ahead has been launched by Disability Rights UK with a focus on post-16 education, training and work. The magazine is produced in collaboration with young disabled people for young disabled people.

The first issue covers ideas for your CV, searching for jobs, useful technology, the benefits of work experience and much more. It will be out quarterly and availale on the DRUK website in a variety of formats.

Visit disabilityrightsuk.org to read the first issue.

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RACING DREAMS

T

eam BRIT, the all-disabled racing car team, have made an extra special effort to make a five-year-old boy’s dreams come true.

Laigan Hammond is from Colburn, Catterick Garrison, and he has a genetic muscular condition. He was diagnosed with spinal muscular atrophy (SMA) Type 1 when he was 11 months old. The condition affects the nerves going to muscles and impacts everything from his breathing and swallowing to his ability to move.

On Saturday 12 September, Laigan and his family were invited to Oulton Park circuit in Chester to watch alldisabled Team BRIT race in the Britcar Championship.

The team, which aims to be the first British all-disabled team to race in the Le Mans 24 hour, supports people with physical and psychological challenges in accessing motorsport. The team uses the world’s most advanced hand controls to drive, and when hearing

about Laigan’s story, team founder Dave Player, invited them to the race.

Laigan spent time meeting the drivers, seeing the cars and watching the race, before being presented with his very own electric car which the crew fitted with a joystick to allow him to drive.

Laigan’s mum, Nataleigh said: “Thank you for the brilliant gift you have given Laigan. He will be overjoyed to be able to play as a ‘normal’ child would in the garden on something we never thought he would be able to use. It really does mean the world to us that you have thought about our boy. Thank you for inviting us down to meet you all. This is such an amazing opportunity for Laigan to see that his disability will not hold him back from doing anything he wishes to do.�

Team BRIT founder, Dave Player said: “It was such a pleasure to meet Laigan and his family. I hope we were able to show him that disability doesn’t have to hold you back from your dreams, and that he’ll have a lot of fun being an honorary Team BRIT driver at home!�

Further information on Team BRIT can be found at teambrit.co.uk.

LATEST

TWEETS

SICK @aSICKmagazine We are now accepting art submissions for our 2021 wall calendar! Send us your illustrations, collages, paintings, photographs, etc etc etc!

More info at sickmagazine.co.uk

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Pippa @lifeofpippa New hair, who dis? Today I made my second donation (10 inches of hair!) to @LPTrustUK and already I feel 1000x better for it.

đ&#x;’‡

My illness means I can’t donate blood or stem cells, but there’s nothing that really holds me back from donating hair instead: instagram.com/p/CFus8K4j_Og/

Eugene*Grant @MrEugeneGrant It arrived! A real privilege to be included in this fantastic collection edited by the excellent @veronikellymars.

My essay is about #dwarfism, #disability & #masculinity. I don’t know if writers are supposed to say this but: I’m quite proud of it. Can’t wait to read the others!

Susan Griffiths @SusanGriffiths5 This is the reality of what is happening to deaf HCPs in the UK. So many of us are not allowed to do our jobs due to face masks. The clear masks @NHSEngland have produced are totally unsuitable. This needs to be addressed ASAP as it is now 6 months and counting‌ @MattHancock

Photo: Darren S. Cook

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SUPERHERO TIME

T

he Superhero Series is the brainchild of Paralympian Sophia Warner who has cerebral palsy and was the first person with a disability to enter the London Triathlon back in 1998.

“I found entering such events extremely challenging, for example, getting in or out of a wetsuit, my bike off the rack and not to mention trying to complete a fun run when the organisers were already clearing up and had reopened the roads,” explained Sophia.

It was these experiences which led Sophia to establish The Superhero Series. The aim was to create mass participation sports events which were open to as many people as possible despite their level of mobility, where entrants could use any type of equipment to complete the course, be it powerchairs, racerunners, adaptive bikes or baby buggies and much more.

Previously the winter event has taken place at Dorney Lake where entrants would run, walk, cycle, push or be pushed around the lake, but due to the current pandemic entrants in this year’s Winter Wonderwheels will be taking part at home between 5 Nov - 6 Dec. During this time each individual or team will aim to complete a total of 20km, however you can do less or more depending on your level of mobility. This can be done anywhere, from your living room, garden or local park, and can be done in any way by walking,

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running, jumping, skipping, swimming, the choice is yours.

For those of you with a more competitive streak, there is the Superheroes Race Round the World. As with all the Superhero events, entrants can choose how they take part in terms of location and activity, you join one of five SUPER teams, each of which has a celebrity captain. The aim is to help your team get as close as possible to the ultimate SUPER team goal of 40,750km between the designated dates. You can find more information at superheroseries. co.uk/superheroes-race-aroundthe-world.

Quest Limited is delighted to be an official Power Pack Super Partner for the Marvel powered Winter Wonderwheels event this year.

The Quest team will be available prior to the event to help with any equipment setup or repair questions you may have and also to offer the opportunity to rent a RaceRunner or Gameframe through the CP Sport Rental Scheme: cpsport.org/sports/racerunningand-game-frame-rental-service.

“Everyone at Quest is incredibly excited about once again being part of Superheroes. It is bringing people together in a community that celebrates all our own unique abilities and super powers!” commented Rob Henshaw, Managing Director, Quest.

The culmination of the event will be a one-off programme on Channel 4 in December presented by Clare Balding when the overall winners will be announced.

Visit superheroseries.co.uk to get involved.

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DADVIRTUAL 2020

D

isability Awareness Day has gone virtual this year and will be taking place on Sunday 25 October.

Due to COVID-19, they were unable to hold the 29th annual live DAD events in July. In response, they have developed this exciting online platform from which you can experience the usual weeklong schedule of complimentary events, starting with DADVirtual.

DADVirtual will continue to be pan disability, with a strong focus on providing information, advice and guidance on mobility and independent living. You can visit the Arts Marquee and be inspired by the inclusive sports and hobbies on show in the Sports Zone or sign up for one of the many workshops or seminars running from the 26-30 October.

DADVirtual is completely free of charge, but donations are welcome and will go towards making next year’s 30th anniversary event something extra special.

LEGENDS AREN’T BORN. THEY’RE MADE.

JEEP RANGE AVAILABLE ON THE MOTABILITY SCHEME FROM NIL ADVANCE PAYMENT* For more information or to book a test drive visit www.jeep.co.uk/motability or visit your nearest Jeep dealer.

Fuel consumption figures for Jeep Compass and Renegade in mpg (l/100km): Combined 29.4 (9.6) - 48.7 (5.8). CO2 emissions 225 – 151g/km.

Fuel consumption and CO2 figures are provided for comparative purposes only and 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. Only compare fuel consumption and CO2 figures with other cars tested to the same technical procedure. *Jeep Compass and Renegade available on the Motability scheme. Models shown: Jeep Compass 1.4 MultiAir II 140hp Night Eagle (with additional bi-colour paint @£400). Available on the Motability Scheme from £1,295 advanced payment. Jeep Renegade 1.0 GSE T3 120hp MT 4x2 Night Eagle. Available on the Motability Scheme from Nil advance payment. Vehicles only available through Motability accredited participating Jeep retailers and are not available in conjunction with any other offer. Subject to orders being placed between 1st October and 31st December 2020. Terms & Conditions apply. Offer may be varied or withdrawn at any time.

It has come as a shock to me that movements that seek to better the lives of others have actually come under scrutiny and opposition.

SAM RENKE

Some calling it “woke nonsense” or “political correctness gone mad”.

Then there are those who believe that movements such as these are actually driving a further wedge between people instead of bringing them closer together.

I had an interesting conversation with a friend of mine who raised this point exactly, she said that she has now become scared to approach minority groups out of fear of doing the wrong thing.

COLUMNIST

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

It was a really strange conversation to have over a few gin and tonics as she specifically touched upon my own activism. I was taken aback to think that anybody could read one of my columns or hear me talk on television and take what I was trying to say as something as a personal attack, and in turn ostracise disabled people further.

UNLEARNING

T

he past few years have seen a rise in movements which aim to change and challenge the often damaging ingrained, stereotypical and negative narratives we’ve all been indoctrinated by from years of oppression favouring those who are deemed elite within society.

These movements ultimately aim to create a more equal and inclusive society by shining a light on everyday inequalities and calling out unconscious bias, discrimination and prejudice towards minority or ‘undersirable’ groups.

The overarching message being one of ‘unlearning’.

Simply put: we will no longer tolerate ignorance used as an excuse to perpetuate ableist, transphobic, homophobic, ageist, or racist views.

I for one have been educated and empowered by movements such as #MeToo and #BlackLivesMatter.

As an activist these movements have given me the courage and voice to no longer keep my mouth shut or tone down my opinions because I may rock

the boat. It has also encouraged me to think about what I stand for, who I want in my life, and how I can educate and help others to unlearn ableist views.

I’d assume that, like me, most people would welcome this social progression because only good can come from understanding how others live and wanting to make their lives fair, safe and equal, right?

“My activism is simply to say, we have experienced this, it made us feel hurt, afraid, left out so here’s the way I’d like to be treated”

For a split second I thought, “gosh, maybe I’m the problem” and people see me as this extremist, after all I’d hate for my activism to be doing the opposite of what its supposed to.

I slept on our conversation, as I’d advise anyone to do, plus the copious amounts of gin didn’t give me a clear head. I then began to unpick what she had said and realised that in fact it’s not up to me to censor my activism to make others feel less threatened or to make them feel comfortable.

My activism is simply to say, we have experienced this, it made us feel hurt, afraid, left out so here’s the way I’d like to be treated. If you simply listen and unlearn we can live much more harmoniously together.

The bottom line is people will always let their ego get in the way of change, no-one likes to hear that their actions have negative consequences on others but sometimes admitting wrong doings are a hard pill to swallow so the easiest way out is to blame the ones who are calling you out.

Stand true to your beliefs because change never comes easy!

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SELLING MY

SCARS James Marshall-Baquedano started Able Model Management alongside co-founders Joel Oladapo and Ryan Willson, to tackle the lack of diversity in the fashion industry and media.

He shares the journey that led him to take matters into his own hands

G

rowing up I never really felt like I had a disability. The only time I have felt different from others was when I started to look at careers and came across modelling: I’d never considered it before but I had accumulated a wardrobe of funky shirts and colourful trousers and discovered I had a real interest in fashion.

It was here I began to do some freelance modelling alongside my degree.

What interested me most about modelling was how it was used to tell a story.

Particularly, because I had one to share myself. I was born with a congenital heart condition and I had my first of many surgeries at just 3 months old. By the age of 12, I had a stroke, suffered from some visual impairment and at one point, lost all control and feeling in my left hand.

Eventually, doctors were saying that I wouldn’t survive, and if I did, I would never be independent. Although my disability was severe, I hid my scars and enjoyed everyday life like everyone else.

Modelling helped me to do that, for a brief moment. I had been assigned to a small modelling project that would involve me being shirtless. I was confident enough in myself and my scars to do this. Then when I had to unbutton my shirt, things changed.

Once I embraced my heart surgery scar being on show, I noticed the fashion coordinator’s reaction. I suggested it would make an interesting focal point for the image but after one look, the photographer said, “I think we’ve got enough for now,”.

And that concluded the shoot.

All confidence and excitement drained from me. Could this have been my fault?

My scars were a part of me, and I never thought they would cause me to miss

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Clockwise from top: Models – James Freeman, Emily Roberts, Olivia Gallagher, Liv Chapman.

Photographer – Kieran Skudder (James Freeman), Nicholas Moylan (other images)

out on opportunities. I never felt like my disability could hold me back, until that point. Not wanting one unfortunate situation to halt my career, I put together a portfolio full of images with my scar perfectly on show. But it slowly became evident to me that scars didn’t sell.

It left me thinking; is there a platform for disabled models? Are there any magazines or mainstream media channels, or even shops that display models with these qualities? I dove into research on the fashion industry. I scoured modelling pages, websites, posters and there wasn’t a scar in sight or the slightest hint of someone with a disability. Something about this felt so wrong to me. The term inclusion has been a big talking point within the fashion and media industry for

Top image: James MarshallBaquedano (founder of AMM) Bottom image: Mattie Reynolds Images by Nicholas Moylan

years, and as far as I’m aware it was moving in the right direction. Most of us can do online shopping and find items we like easily: I myself have no problem finding a new outfit using popular shopping brand websites. However, for many disabled people there may be obstacles to this. For example, wheelchair users won’t know how the garments fit whilst being in a chair if they have no point of reference; others with growth restrictions may be forced to shop in the children’s section and buy clothing that might not match their style preferences. What felt wrong to me about this, is that I have always viewed fashion as a form of self-expression, and to deny a demographic the ability to do that was to deny them of being themselves. There is

an air of taboo around disability, and that is because society always focuses on the disability someone has rather than their personality or qualities. The world has so much more to offer if we learn to look past it’s simple base layer.

This is why I founded Able Model Management. A team that strives to give equal opportunities and voice to individuals who feel they have been misrepresented by society and the fashion industry itself. The aim of the project was to use photography to address the gap between the disabled community and the media industry, and tackle some of the challenges I’ve mentioned.

When working with a community that feels invisible and underrepresented, the use of photography within a professional climate can truly change perspectives.

It can build confidence, motivation and a determination that everyone should feel they have a right to. It is with the powers of photography that Able Model Management want to help diverse demographics express themselves and flourish.

We work closely with each model, getting to know each and every one of them so that when it comes to publishing our work, we can tell their stories alongside their images. We have now proudly developed partnerships with clothing companies who share a similar ethos to ours. For example, we have worked with Found Hea - a company whose products are ethically sourced, creating a new generation of fashion. For our collaboration, we hosted a photoshoot where our models were captured in a selection of Found Hea’s unique clothing.

Our list of collaborations is still growing and that is why we want to reach out.

We hope to spread a positive message and introduce more diversity within the fashion and media industry, as we believe fashion is for everyone. Our mission statement details our effort to create one’s own opportunity. As a team, we are all passionate, driven and dedicated to creating work that will inspire others and raise awareness. Furthermore, we are a team of equals who believe that anyone is ‘able’ and should be represented no matter what society says.

Find out more at ablemodelmanagement. co.uk or follow them on Instagram @ablemodelmgmt.

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Winter WARMERS

BY KATIE CAMPBELL Autumn is becoming winter, and as the days get shorter, our cravings and nutritional needs are changing Winter is almost upon us, and the change in the seasons means a change in diet for many of us. Hearty meals that fill the stomach and restore the soul will be on the cards, with the desire to finish off the day with a light, cold meal being repressed until the days become longer once again in spring.

With winter comes flu season, shorter days, and the desire to comfort eat - the latter of which will be exacerbated by the current lockdown. Making sure we’re eating well while still eating heartily is a good thing to take notice of in the winter months.

VITAMIN D We get most of our vitamin D from sunlight; the sun contains UVB radiation that helps our skin and liver turn cholesterol into a usable form of vitamin D. However, during the winter, sunlight may not contain enough UVB radiation to kickstart this process, so we find ourselves in a deficit. Vitamin D is important to the body as it facilitates the uptake of calcium, potassium, phosphates, and many other minerals, while also helping to maintain a good immune system - something that’s very important in the wintertime. There aren’t many foods that naturally contain vitamin D, but oily fish and some mushrooms do. If you’re concerned about vitamin D levels in your diet, you could also take a vitamin D supplement, but it might be a good idea to consult with a doctor first to see if that’s right for you.

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HYDRATION STATIONS You may think that summer is the season to concentrate on staying hydrated, but it’s important all year round to make sure you’re getting a good amount of water into your body. Lower temperatures and less sweating may make you feel like you don’t need as much water, and can lead you to drinking hot drinks to combat the cold instead. All liquid is good, but some are better than others (sadly). Tea and coffee contain caffeine, which encourage the body to urinate; in larger doses, which amount to about the same as three cups of coffee or eight cups of tea drank in succession, it can increase the risk of dehydration. Keep a bottle of water with you to ensure you’re hydrating enough throughout the day.

TAKE STOCK Keeping a good stock of tinned food and frozen vegetables is a great idea: if you don’t manage to fight off the flu this winter, you’ll want food to hand that can be made quickly and without much fuss. Disregarding the flu entirely, having a stock of food that’s easy to prepare is ideal and probably something you already do - finances and space permitting - if you live with a health condition or disability that causes you to experience flare ups.

SLOW COOKING

COLD COMFORT

If the time-consuming nature of putting together something balanced and nutritious is off-putting - which is entirely valid - the answer may be to pull out the humble slow cooker and let it do the bulk of the work. Slow cookers offer a way to create nutritional, warm, hearty, and most importantly, delicious food, all the while you can be off doing something else. Filling stews, nutritional soups, and warming curries can all be made with absolute ease in the slow cooker. Fill the crock pot up with ingredients, set it to the appropriate temperature, and head to your home office until dinner time, at which point you’ll have a feast awaiting you that’s fit for a king.

Everyone is going to tell you not to comfort eat because you’ll put on weight. PosAbility are not going to tell you that. Putting on weight is not the end of the world. We are going to tell you that Oscar Wilde apparently once said “everything in moderation, including moderation,” which we are big fans of. If a large PSL is what you need today, then you go for it. If you are craving a mince pie of an evening, we will not be the ones standing between you and the cupboard. Factor these things into a balanced diet; try and get your five fruit and veggies a day, embrace portion control, and remember to hydrate.

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MIK SCARLET COLUMNIST

Follow Mik on Twitter

WHEELS OF CHANGE

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s the lockdown eased and we could venture outside for an hour’s exercise again, the country went silly over cycling. I attached my Freewheel to my wheelchair and went powerwheeling myself. I was so lucky to be given a handcycle attachment by the wonderful Isabelle Clements, the director of Wheels for Wellbeing, who promotes cycling for all. She’d had this cycle under her sofa for years apparently, and hoped that with a little fixing, I’d soon be addicted to the joys of cycling.

I actually remember getting my first tricycle at age 12. It was a revelation, and allowed me to join my mates as we raced around the streets of Luton where I grew up, and venture off into the surrounding countryside. When I became a wheelchair user a few years later, I missed the freedom of cycling, at least until I got my first car. But this isn’t an article trying to get you all to give up your cars and try cycling: it’s fuelled by the battle I have had to get the amazing gift of a handcycle to actually fit my wheelchair. Many months later I still haven’t gone out cycling. In fact, I’ve spent hundreds of pounds on tools and parts, and it is still lying in bits in my living room, much to the annoyance of my wife.

I’ve had it serviced and made road worthy by a mobile cycle servicer called Dinky, and since then I have been battling to make it fit safely onto my wheelchair. I’m getting there, but today I am waiting for yet another tool to finish the job. I hope.

What’s stunning about this situation is that this handcycle attachment is meant to be universal, meaning it is

@MikScarlet

designed to be attached to any chair.

I have three chairs, but it will only fit one of them, and trying to attach it is akin to the Labours of Hercules.

When it came out many years ago, it cost £1000, but the units today cost between £1500 and £3000 - that’s the same price as my wheelchair!

My current day chair is custom built, made by a company called Roma Sport, which comes in at around £3500. For a made-to-measure custom chair, that’s pretty good. Most manual chairs are between £3000 and £7000, but for powerchairs, we’re talking new BMW money. Why on earth is something that is so essential to people so damn expensive? I know this is something all wheelchair users are concerned about, because these huge prices also apply to all equipment for disabled people, not just the big stuff. Wheelchair gloves cost many times more than gloves you can buy from DIY stores, yet are almost exactly the same (consumer hint there, folks).

It doesn’t have to be this way. I once purchased a chair from a company called PDQ that cost £595 for everything. You could also buy a powered handcycle attachment for the chair which came to £1200 for the lot. I loved that PDQ. It wasn’t custom-built, it just came in standard sizes, but I modified it to suit my giant 6’3” frame. Eventually I gave it to a charity that gave chairs to people who couldn’t afford them, as I knew it was as good as they day I unboxed it.

My current chair is the nearest match to that one, but it’s nearly £3k more.

I get that these private companies need to make a profit, but surely it is time that something was done to make them more affordable?

Another major issue with wheelchairs, and other disability equipment, is that

it is mostly designed by non-disabled people. Disabled people are not consulted so past mistakes and flaws just get carried forward without being questioned. The most innovative yet functional chairs I know have all been designed by disabled people, and are usually made by companies that are run and staffed by disabled people. I’ve also noticed that many fight to keep their prices low, or offer a budget range of chairs.

The charity Motivation is proof that the concept of user-led design drives you to keep costs down. They build amazing all-terrain chairs for people from developing countries and you can buy one for a disabled person for £140! You can also buy a sports chair made by Motivation in the UK for £600, and that includes VAT. They even make a racing chair for £750 including VAT. Who runs Motivation?

Wheelchair user David Constantine MBE, an amazing man who leads his team to give the poorest disabled people the chance to live lives they could never have dreamed of.

I know I always bang on about the mantra “nothing about us without us”, but it really is time that disabled people were given the chance to design and make the equipment we use to allow us to live? I know if we did the companies that manufacture the stuff would benefit, and so would society. We would see the silly little flaws that keep being repeated banished, and it could put high quality equipment within the reach of all of our community. I ask all equipment manufacturers: go out and seek out disabled design and engineering talent. Take us on and let us fly. You’ll reap the rewards and so will we all.

By the way, I have an amazing design for a wheelchair that appeals to bikers. Just saying.

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INKYSLOTH With prints inspired by nature and industrial architecture - specifically pylons - Robin Bray creates beautiful prints, embroidery, and calligraphy which meld opposition together; natural and old meet new and industrial seamlessly. If you’re in the market for a rainbow pylon greeting card, or someone to create you custom gilded calligraphy of one very specific swear word, Robin is the person to go to.

Complementing the items featured on his Etsy shop, Robin also accepts custom commissions via his website, and offers workshops teaching linoprint techniques to people aged six and up. If you’re in the market for something more wearable, Robin also has a Teemill where he sells t-shirts featuring fantastic industrial architecture and also, dinosaurs.

BY KATIE CAMPBELL Purchasing from small businesses is a great way to ensure money goes directly to the product’s designer and creator. Here’s five small businesses run by disabled people who you can support with your hardearned dosh

etsy.com/uk/shop/Inkysloth inkyslothshirts.teemill.com

ANANYA RAOMIDDLETON Ananya Rao-Middleton makes stunning art, celebrating and advocating for disabled people through her boldly colourful designs. Ananya’s designs emphasise the nature of invisible disabilities, and challenge the societal demand for disabled people to “prove” that their disabilities or illnesses actually exist - some of her previous designs have even included her love for Brazilian Ju Jitsu! Based in London, she lives with multiple sclerosis and post concussion syndrome, and wrote on her Instagram earlier this year that she uses her art as a way to “articulate the realities of living with chronic health conditions.”

Ananya recently launched a range of t-shirts on her Etsy, which features three beautiful designs in a range of inclusive sizes, from XXS to 5XL. etsy.com/uk/shop/ananyapaints

PIXIECRAFT Katy Fenner founded Pixiecraft in 2012, having begun learning the craft of needlework just a year previously. In the eight years since then, she’s established an absolutely huge range of embroidered products on her Etsy, from the most adorable little pocket calmers emblazoned with meaningful messages, to completed embroidery hoops and DIY kits. Earlier this year, Katy began selling fantastic embroidery featuring sexy disabled people: ones with stomas, wheelchair users, some with limb differences, and others using rainbow-accented mobility aids. She spoke openly about the items on her Instagram in September, discussing living with EhlersDanlos syndrome and POTS. If needlecraft is something you’ve always wanted to try, Pixiecraft sell a wide assortment of fun, funny, and sometimes sweary kits for you to sink your teeth into! etsy.com/uk/shop/PixiecraftHandmade

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BATMOONS Jas makes things in multiple media, including polymer clay, badges, totes and prints, many of which feature powerful affirmations to remind you that it’s ok to take up space; that you can thrive even if your surroundings infer that you can’t; and that you are made entirely of magic. Their Autistic Magic kit includes a smorgasbord of items available on their Etsy, including a zine to help with burnout for people who live with autism, a guide on how to use and cope with public transport, an “actually autistic” print, a fantastic “please do not touch me” badge and some cute stickers. They also sell awesome badges which you can pop on your jacket or bag to display some LGBTQIA+ pride, mental health positivity, or a sweet reminder to be a little more positive to your body. etsy.com/uk/shop/batmoons

INVISIBLE ILLNESS SQUAD Self-described “chick with a walking stick” Johannah Sangster lives with joint hyper mobility syndrome, and in her downtime from being a model, working on her Masters degree, and just generally being fantastic, she established the Invisible Illness Squad on Etsty. From her store, you can purchase hats, jumpers, t-shirts and more, featuring slogans like “kindness is visible”. You can also treat yourself to a pamper pack, which contains a beanie, candle, soap and wax melts. The candle is available in an assortment of scents, including calming lavender, soothing cashmere, and bright orange. Each order made from her store also includes a free fabric badge pin! etsy.com/uk/shop/nvisibleIllnessSqua

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Live life your way! ...Dare to be different!

Optimus 2 Optimus 2 RS version shown in image There are no boundaries to the freedom you will experience with the upto 8mph Optimus 2 Powerchair as it takes you on a journey no other Powerchair has yet. It copes fantastically on a multitude of terrains from sand to snow to cobbles to mud while prioritising comfort for the whole journey.

This powerchair doesn’t focus on limitations but rather celebrates the opportunities

Adventure is on the horizon with an industry leading range of upto 42 miles on one charge meaning you can cover more distance and explore without worrying about the battery as it’s designed for permanent all-day use.

Recommended for those who use a manual wheelchair or walking aid indoors but need a more supportive, sturdy option when tackling the outdoors, our qualified

it creates which may otherwise be impossible, uncomfortable or demanding. Enjoy the beautiful countryside and landscape of the whole UK from the security of your Optimus 2 Powerchair.

Rascal Rehab Specialists can ensure this Powerchair meets your needs. PLUS with a host of additional upgrades the Optimus 2 makes a great companion for those with more complex care needs, such as the tilt feature and the backrest angle adjustment.

This German built, multiterrain, off-road Powerchair is the only choice if you are looking for a life without limits.

• Excellent traction & off-road For more information & mobility with aluminium rim Electric Mobility Specialists: • Optimal sitting comfort • Small turning circle of 120cm • Maximum weight capacity upto 150kg / 23.6 stone electricmobility.co.uk • UK Exclusivity

0800 252614 E. and O.E

Send special cards this Christmas…

…show your support for our disabled artists who created them.

With Christmas just around the corner, you probably need to start thinking about which greetings cards to send.

To send a special Christmas message this year, why not choose the greetings cards our group of painters produce at the Mouth and Foot Painting Artists.

Our festive cards are all reproduced from our original paintings, that we create by uniquely holding a paintbrush in our mouth or with our foot.

Just visit our website to purchase from the wide range

L-R Rosaleen Moriarty-Simmonds OBE, Alison Lapper MBE and Peter Longstaff

of cards we offer. At the same time, you’ll also be able to browse through the many other Christmas products we produce including a desk calendar, jigsaw puzzles, wrapping paper and children’s books.

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57-2020

To show your support for our work go to: www.mfpa.co.uk

Mouth and Foot Painting Artists

Teenage LOCKDOWN

Mary Cole is a mum to three children, and her eldest son Ben has Down’s syndrome. During lockdown Ben turned thirteen, a difficult time for any young person. Mary shares the challenges that they experienced as a family and the impact of having no routine or respite during this time.

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ur eldest son Ben is in year seven, and was happy and settled at school before lockdown started. After that, his world suddenly changed, and became very confusing. He is a typical teenager in many respects.

Ben loves the company of his friends, enjoys music, playing computer games and watching TV. He has strong opinions, is moody and concerned with his appearance. He also happens to have Down’s syndrome.

Ben is in year seven and was happy and settled at school before lockdown started and his world suddenly changed and became very confusing. He has been shielding, which means he has barely been out of the house since March.

Ben is very sociable, and he has missed seeing his school friends and extended family. Each week he would stand in the doorway and join in enthusiastically with the clap for carers but then get distressed afterwards. This tantalising contact with the outside world served to remind Ben of how much he was missing his friends. He had Zoom meetings with school friends and we have had regular family get-togethers on Skype. However, keeping in touch this way was a challenge for Ben who relies heavily on his non-verbal communication skills which work differently on a screen. Ben has an extensive vocabulary and demonstrates a good understanding of what is said to him, but he has difficultly forming sentences and his speech is unclear to those who do not know him well. The paperwork for his Annual Review this summer included the description of Ben having a magnetic personality who is popular with his classmates. It was upsetting to see him withdrawn and struggling to participate in virtual lessons or Zoom calls with his friends. He also loves to hug. It was very poignant to watch Ben hugging the laptop when talking to his grandparents on Skype.

It was very poignant to watch Ben hugging the laptop when talking to his grandparents on Skype

Ben may struggle with speech, but he finds other ways to communicate what he is feeling. He has been working on his life skills during lockdown, including being more independent with dressing. About a month into lockdown, there was a day when he dressed himself in his school uniform. This was his way of demonstrating unequivocally that he was missing school.

Ben attends our local secondary school which has an Enhanced Resource Unit providing specialist provision within a mainstream environment. When his peers have Modern Foreign Languages, Ben has Foundation Numeracy and Literacy classes. He attends SEND as well

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as mainstream PE and all his other classes are mainstream.

I often get quite emotional when I drop Ben at school as I long for more schools to be like his. It has a firmly embedded ethos of inclusion. Ben’s needs are complex, and I am certain many mainstream secondary settings would be unable to meet his needs.

Ben was unable to access his respite care throughout lockdown. Previously he had some respite each weekend, alternating between a club and time with his personal assistant. He also has holiday club days allocated for the summer and Easter holidays. It made us realise how much we were all benefitting as a family from Ben’s respite.

He accesses fun activities which he enjoys, and we get a chance to catch our breath and do activities with our other two children that might be more difficult with Ben present.

He does not have challenging behaviours as such, but he is impulsive and unpredictable. This coupled with his lack of awareness of danger means we must always be on high alert, which can be exhausting.

I often get quite emotional when I drop Ben at school as I long for more schools to be like his. It has a firmly embedded ethos of inclusion

He always notices if someone is feeling upset or stressed and will respond with kindness Like all teenagers, Ben has been dealing with some strong emotions. A very inaccurate and profoundly unhelpful stereotype is that people with Down’s syndrome are “always happy”. Ben does have an amazing capacity for joy which is infectious, but he experiences a full range of emotions, like anyone else. He has had times during lockdown of getting upset and tearful and occasionally quite angry. Usually it passes quickly, and he can be distracted by something he finds enjoyable, but inevitably his difficulties with communication leave him feeling very frustrated at times.

Ben is hugely empathetic. Lockdown has presented different but significant challenges for each of us in our family. Ben picked some flowers for me from the garden one day when I was feeling completely overwhelmed by the competing demands of working from home whilst overseeing home schooling. This is typical of Ben. He always notices if someone is feeling upset or stressed and will respond with kindness.

Lockdown meant removing the security of many routines which help Ben navigate his world. It has been challenging, but he has demonstrated resilience and good humour in his response to this very confusing situation. I am confident these qualities will help him adjust to a life which will probably never be quite the same as it was before the pandemic.

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EMBRACING

Cold THE

BY ROSALIND TULLOCH

It’s getting cold outside and we are not allowed to visit anyone else’s house. This means it is time to get prepared for the cosiest home winter imaginable and to prep for any outdoor meetings with friends. From reusable coffee cups to gloves that allow you to text with them on, we have got you covered to make the most of a semi-locked down wnter.

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Compact Flip Umbrella

Getting prepared for the rainy weather that inevitably accompanies our winter months is essential. This clever little umbrella opens and closes at the touch of button, great for those with limited hand dexterity, and it also closes in reverse. This may sound strange but by closing in on itself it prevents you from getting soaked when putting it down and you don’t have to leave a dripping wet brolly at your door.

The Brolly Store | £29.99

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Looking to make a statement with your face mask?

We have just the one for you. This ‘equality’ face mask beautifully represents the disabled community, the LGBTQ+ community, the Black Lives Matter campaign and gender equality, and it does it all very subtly by spelling out ‘equality’ using well-known representative symbols.

McCloskey Store on Etsy | £10.59

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Rosa May Navy and Grey Wool-mix Cape

This thoughtfully designed cape is as stylish as it is practical. It is longer at the back so it can be easily tucked underneath you when seated, and the armholes are ideal for those who have limited upper limb mobility or shoulder rotation as they allow for easy dressing. It also includes a silver zip that runs down the front of the cape and has antiwrinkle properties. The perfect addition to any wardrobe.

Kintsugi Clothing | £85

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Frida Kahlo candle

This gorgeous smelling range from Flamingo Candles brings you both a beautiful scent and some beautiful words from the talented artist and disabled icon. The latest Frida Kahlo collection introduces new scents of raspberry granita and frangipani, blackcurrant and rhubarb, and watermelon and willow moss. “We can endure much more than we think we can” is a poignant quote in times like these.

Flamingo Candles | £14

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Equality Face Mask

Nespresso Essenza Mini Coffee Machine with Aeroccino

One of the things we love about the cold weather is the accepted nature of having a hot chocolate for breakfast or trying every flavour of latte available from coffee shops. However, in today’s climate we would recommend investing in your very own coffee machine with an allimportant milk frother to ensure you can make amazing hot chocolates in your very own kitchen. Don’t forget the marshmallows.

John Lewis | £119

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Reusable Bamboo Coffee Cup

My Own Words by Ruth Bader Ginsbug

The Ecoffee Bamboo Reusable Coffee Cup ticks several boxes on our socially responsible list, and it is really pretty too. It is an environmentally-responsible reusable cup made with natural bamboo fibre, it reduces your use of single-use plastic, will save you money in coffee shops (or you can make your own at home), it has a grippy surface, a no-drip lid and it’s dishwasher and microwave safe. It also comes in four gorgeous colours.

Copper Coffee Roasters | £9.95

Curling up on the sofa with a good book is good for the soul. With the recent passing of the incredible Supreme Court Justice Ruth Bader Ginsburg, what better time to read about her life, work, influence and the change she brought about in gender discrimination law in the United States. Known affectionately as ‘The Notorious RBG’, she will be remembered as one of our generations most influential voices.

Blackwells | £8.99

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Silentnight Alexa-Enabled Electric Blanket

Imagine a heated blanket that you can set for bedtime and naptime. We are here to tell you that it actually exists, if you have an Amazon Alexa. By using a Silentnight Smart WiFi plug that is compatible with Alexa and downloading the Silentnight app you can control your electric blanket from your phone or tablet, ensuring your bed is always cosy when you get in.

Amazon | £54.66

Slipper Boots

A vital piece of your winter wardrobe, slipper boots are essential for keeping your toes cosy whether you are doing household chores, binge watching Netflix or curled up on the sofa with a good book. Good old M&S never fail to provide a good quality slipper boot, and these ones are even vegan-friendly and feature memory foam in the sole.

Marks and Spencer | £19.50

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EDZ Merino Wool Touch Screen Gloves

You know that moment when you have to reply to a text but it’s so cold you can’t bear to take even one glove off?

Well, these merino wool gloves are solving this problem for us. Made from beautifully soft wool to keep your hands nice and cosy, they are thin enough to text and they also have rubber dots on the palms and fingers for grip, ensuring you don’t drop your slippy smartphone.

EDZ Layering | £12.49

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THE NEW

M-Series ARE YOU READY FOR MORE? • More colour and a fresh new look.

• Up to 25% greater driving range • 2X more powerful LED lights • More seating comfort and stability • Ready to connect with the MyPermobil app Visit Made for more

permobil.co.uk | info@permobil.co.uk

Survivor SUPPORT Living with a brain or spinal cord injury following an accident is completely life-changing. A period of physical recovery and rehabilitation is inevitable and can take weeks, months or even years of hospital visits and therapy. Adjusting to your new life mentally can be just as challenging

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support system of friends and family are vital for life-changing events like this, knowing you have the people who love you helping you through a difficult adjustment is so important. However, sometimes it is just as important to seek out people who have been through similar experiences as yourself. The therapeutic nature of talking to someone who ‘just gets it’ is undeniable, it can help you realise you are not alone in the way you are feeling and can help you to feel validated and empowered.

There are a wonderful mix of blogs, podcasts, websites and support groups out there that offer practical information and advice, share personal stories, and talk openly about life with a brain or spinal cord injury. We have rounded up a few of the best ones out there and give you a brief synopsis of what they offer.

JUMBLED BRAIN Following a car accident in 2014, Michelle Munt was left with a diffuse axonal brain injury, something she was keen to raise awareness about to help others understand what it meant to live with this brain injury. She started writing her blog jumbledbrain.com to share her experiences and offer advice and tips to others in a similar situation. She told Headway: “I’ve had great feedback, with many telling me that it helps them as they can’t always express what living with a brain injury is like. They can relate to my articles and direct loved ones to read them so they can better understand what they are going through. Instead of writing it as a diary, each article is about a particular topic. My aim is to make it easier for people to find a particular subject.”

The success of this blog has seen Michelle start a coaching service to help people living with a brain injury to build confidence and thrive. Her first-hand experience and knowledge of brain injury puts her in a unique and empathetic position to understand survivor’s challenges and enables her to help them flourish in their new lives.

Her blog is packed with important topics on life with a brain injury, personal experiences, and even guest blogs from other survivors. It is a great source of information and support.

FOLLOW Facebook: @jumbledbrain Twitter: @michelle_munt Insta: @michelle_munt Blog: jumbledbrain.com

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HEADWAY

BACK UP

They offer numerous services to support survivors, including a free confidential helpline, support groups and online communities and forums. The Headway HealthUnlocked community that they have created allows users to post questions, share advice, connect with others and share personal experiences.

They run a telephone service that is open to anyone who has a spinal cord injury and their loved ones to call when they need to talk, whether that be for practical advice or when you just need someone to talk to. They also run the Back Up Lounge where several virtual lounges are set up every Wednesday evening from 6-7pm to allow you to join in a specific topic of conversation or you can join the catch up corner and just have a general chat with people who have a spinal cord injury.

Headway, the brain injury association, has been a charity for 40 years. Dedicated to supporting those living with a brain injury and their families, Headway has been integral in improving the care and services available to help people with a brain injury lead fulfilling lives.

The website itself is filled with informative pages on brain injury, caring roles, rehabilitation, practical issues, relationships and they can even recommend solicitors who specialise in brain injury in your area. Headway can also provide you with a Brain Injury Identity Card to carry with you to help explain your brain injury to others without having to physically explain this every time.

They have a My Story section that allows people to submit their own stories of acquiring and living with a brain injury.

This can be done via video, written story, podcast, or any other creative method. It can be cathartic for many people to share their experience and it can help others who read or listen to your story.

Back Up is a well-established charity that offers support to anyone living with a spinal cord injury and their loved ones.

Their website is an important resource of information on spinal cord injury, the terminology used around it and it offers safe spaces to connect with others.

Another great service you can access through Back Up is their mentoring service. Back Up mentors all have experience of spinal cord injury either directly or through a loved one and they have all been trained by clinical psychologists to effectively support individuals.

Their blog is informative and enjoyable to browse, offering a mix of practical information, news of campaigns and events and relatable personal stories. You can also subscribe to their YouTube channel which is filled with great video content.

FOLLOW

FOLLOW

Facebook: @headwayuk Twitter: @HeadwayUK Insta: headway_uk Web: headway.org.uk

Facebook: @backuptrust Twitter: @backuptrust Insta: @backuptrust Web: backuptrust.org.uk

THIS IS SPINAL CRAP

to and it covers important topics for people living with a spinal cord injury. All topics are open for discussion, from bladder and bowel management and access issues, to sex and dating. The mix of voices and experiences brings a great balance and they have guests on to offer insight or professional input on various topics.

A podcast brought to you by six people living with a spinal cord injury. This team came together when they met at the Spinal Unit Games and were thrown together as a team. Laughter ensued, friendships were formed and as they state on the website: “The banter was wasted in our WhatsApp group, so we decided we needed to share it with the world.�

The podcast team is comprised of Ruth Earley (host), Ian Mackie, Chris Keogh, Grace Spence Green, Rubayet Ahmed and Mark Henderson.

You will be glad the universe brought them together because this podcast is funny, refreshing, easy to listen

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This podcast is not only great for people living with a spinal cord injury to listen to, it is ideal to recommend to family members, friends, work colleagues and employers to tune into as it is as educational as it is anjoyable.

FOLLOW Facebook: @SpinalCrapShow Twitter: @spinalcrapshow Insta: @thisisspinalcrap Web: thisisspinalcrap.com

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/TheBondHotel

Life ON Wheels A

Meet Ross Lannon, a disability and lifestyle blogger based in Cornwall. During the pandemic Ross started The Isolation Diaries on his website to keep himself busy and his readers amused, offering a bit of light relief throughout the global pandemic

ABOUT ME Now this is the bit I always struggle with… where’s best to start? It’s like writing a dating profile - and surprise surprise - I’m still single.

My name’s Ross, I’m 27 years old and I’m a lifestyle and disability blogger from Cornwall.

As you may have guessed from the title of this article, I am a full-time wheelchair user. I have a condition called Spinal Muscular Atrophy (SMA Type 2) which is a rare, neuromuscular condition.

According to the SMA website, the condition causes “progressive muscular weakness and loss of movement due to muscle wasting (atrophy). This may affect walking ability, arm, hand, head and neck movement, as well as breathing and swallowing.”

Sounds great doesn’t it? Please note they seem to have also missed out key parts of the condition, such as handsome good looks, witty charm and endless banter.

Diagnosed at age two and half, the future wasn’t looking so bright. However, 25 years later, here I am, still going strong… ish.

Often described as a “cheeky chappy”, I created my website in order to share comical lifestyle stories, as well as reviewing accessible events, activities and products.

After completing a mainstream education, I went on to study A-Levels at college, one of which was media - a subject that has always been a passion of mine.

After college, I volunteered in various office-based environments, before gaining permanent employment as an admin assistant for the past eight years.

In the meantime, I have also passed my driving test, started a blogging business and moved out of my family home in order to live independently with support from a small team of carers.

Did I also mention that I’m a dog dad? Ralph is my proudest achievement yet.

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Please note they seem to have also missed out key parts of the condition, such as handsome good looks, witty charm and endless banter

LIFE IN LOCKDOWN During the recent pandemic, I made it my mission to keep people’s spirits up online as much as possible. In doing so, I created a series called The Isolation Diaries, where I shared an insight into my life in lockdown and how I managed to keep myself amused. From painting gnomes, to writing and recording a coronavirus parody song - I even made it onto TV to appear in the news.

Although shielding has been ‘paused’, I am still very cautious to venture back outside. I pride myself on being a very positive person, but even I can admit that it has been a tough ride at times.

Probably the biggest test for me was making the decision to leave my job. After shielding for the past six months and with furlough pay coming to an end, I personally didn’t feel ready to return to such a busy working environment.

Although I was disappointed to leave in this way, I felt like I had no other choice than to put my health first. In a bid to use my platform for positive change, I have spoken openly about how I feel the government should have done more to protect disabled and vulnerable workers.

With dreams of now taking my blog to the next level, I have been looking for new ways to write and review events - whilst maintaining complete social distancing. Most recently I attended a drive-in circus, as well as a ‘dome dining’ eating experience, which was just incredible.

My favourite motto in life is “if you can’t stand up, stand out!”

THE FUTURE My favourite motto in life is “if you can’t stand up, stand out!”

Working within the media has always been a dream of mine, and I am passionate about the positive representation of disabilities.

Most recently I have featured in multiple BBC articles - from TV to radio - raising awareness of young adults who are continuing to shield. Over the years, I have also appeared as a ‘supporting artiste’ on a primetime ITV drama alongside the awesome Dawn French, as well as being a contestant on the BBC gameshow Letterbox.

Never one to shy away from a challenge, I am excited for what the future holds (post-COVID - obvs!)

So, there we have it guys, my life in a nutshell. I am definitely proud of how far I have come and grateful for all the support I have received along the way.

You can check out my blog at alifeonwheels.co.uk or follow me on Facebook, Instagram or Twitter @rosslannon to keep up with my adventures.

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THE DENWICK The Denwick by CosiChair is a tilt in space, single motor riser recliner with an easy to use three-button handset which tilts the back rest and leg rest simultaneously while maintaining a consistent back and seat angle for added back and neck support. It assists with standing and sitting independently, is affordable and boasts quality, style and structure, as well as excellent lumbar support.

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MT EVO Mountain Trike’s MT Evo is adapted for riders with limited hand function. It has the same excellent all terrain performance but with even simpler controls. It is ideal for everyday outdoor use and will allow you to tackle woodland trails, rocky paths and get through snow and mud – all while keeping your hands clean and dry due to the clever lever function.

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DISABILITY VISIBILITY: FIRST PERSON STORIES FROM THE 21ST CENTURY Looking for a good book to curl up with this winter? Look no further than activist Alice Wong’s latest book. She has brought together a collection of personal essays by contemporary disabled writers. From original pieces by up-and-coming authors, to blog posts, manifestos, eulogies and beyond. It gives a glimpse into the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of the disabled community.

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Monthly fee from £49.95 03300 10 14 18 techsilver.co.uk

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Autumn ADVENTURES Carrie-Ann Lightley travels to Scotland for a much needed and much anticipated break

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am tentatively wheeling my way across a forest floor, with light dappling through the canopy of leaves and the unmistakable sound of water rushing somewhere nearby. Suddenly I come to a clearing, and ahead of me is the most beautiful waterfall. Using a wheelchair means I’ve never been able to access such natural tranquility, and after all of the stresses and strains of 2020 so far, I’m so grateful for this moment.

I won’t pretend that accessible travel is ever easy, and travelling as a disabled person during a pandemic certainly brings an extra level of things to worry about – but, during my first trip of the year, the stars seemed to align, to remind me exactly why I love to travel. A September heatwave, comfortable accessible accommodation, an amazing piece of mobility technology, and stunning accessible natural environments all combined to make me fall in love with Scotland’s Loch Lomond and The Trossachs National Park.

This was a trip that had been planned many times, first for March and then June, and finally in September I had the joy of packing a suitcase. I had been invited by the owners of Wood Leisure, a family-owned holiday park business in Scotland, to review their new accessible caravan holiday home at Callander Woods Holiday Park in Perthshire.

ACCESSIBLE CARAVAN

The two bedroomed accessible caravan holiday home is modern, spacious and well equipped, with two comfortable twin bedrooms, a wet room, open plan lounge/dining room and accessible kitchen with lowered units. The larger of the two twin bedrooms has an overbed lifting pole to assist with turning and transferring, and the wet room has the usual support rails around the toilet, sink and shower, as well as a folding shower seat. The caravan is accessed via a ramp leading on to decking with outdoor seating, and there is a parking space alongside.

I have fed back to the owners about making some accessibility improvements – a threshold ramp for the door, and some adjustments to the shower seating, would make it even more inclusive. I’m delighted to say that the feedback was responded to straight away and that Wood Leisure are committed to making improvements as soon as possible.

The holiday park itself is in the popular tourist town of Callander, at the gateway to the Trossachs and the Scottish Highlands. Facilities include a children’s play area, fishing, laundry facilities and a dog walking area. The caravan holiday home is pet friendly, so my husband and I were joined on the trip by our little dog, Poppy.

OUTDOOR ADVENTURE This trip taught me that, for the outdoors to be truly accessible you need the right equipment. Some time ago the guys behind the amazing Trekinetic wheelchairs got in touch to ask if I’d like to trial their Trekinetic GTE all-terrain powerchair on my travels, and it seems that we picked the perfect trip for it. Forests, beaches, parks, and gardens; as well as shops, restaurants and pubs – the Trekinetic GTE meant I was able to get everywhere I wanted to go.

Fast Aid Medical and Mobility, based in Midlothian, kindly loaned me their demo Trekinetic GTE and delivered it to me at the holiday park.

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PLACES TO VISIT

QUEEN ELIZABETH FOREST PARK WATERFALL TRAIL My magical waterfall experience began at the Lodge Forest Visitor Centre, Queen Elizabeth Forest Park, Aberfoyle.

Parking up at the centre gives panoramic views over the forest, with a signposted accessible mile long trail through the trees, leading to the waterfall which appears almost out of nowhere. There’s plenty of seating along the way, and the visitor centre has a great café and accessible toilets.

CALLANDER TOWN AND MEADOWS Closer to our holiday home from home, we enjoyed walks around the tranquil Callander Meadows beside the River Teith. Paths are well surfaced and flat, with plenty of bench seating, and parking at the Meadows car park is free for Blue Badge holders.

Callander’s Main Street has lots of lovely little independent shops, cafes, pubs and restaurants, some with steps and some with level access. We had a lovely meal at The Riverside Inn, which has level access throughout, accessible toilets, and is dog friendly.

SILVER SANDS BEACH I had an all-terrain powerchair, and miraculous Scottish September sunshine – I knew I had to spend some time on the beach. An hour’s drive from Callander brought us to one of the most popular and attractive beaches on the Fife coast – Aberdour Silver Sands. Parking was plentiful, but busy, even in the middle of the week. We enjoyed a lovely lunch at the beach café’s outdoor seating, overlooking the bay. Public toilets are available, including accessible toilets.

COVID SAFETY Accessible travel during a pandemic, is for me – to use that famous 2020 buzzword – unprecedented. I had no idea what to expect, and I was apprehensive. But I can reflect on this trip honestly saying that I felt safe – from the thorough deep cleaning of the caravan park holiday home, to enforcement of social distancing measures, temperature checks in restaurants and those around me wearing face coverings. This break gave me a much-needed reset, and I now feel ready to face whatever winter 2020 might bring.

FIND OUT MORE To read Carrie-Ann’s full in-depth review of her trip to Callander, including links to all of the places visited, visit her blog at carrieannlightley.com.

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LET’S

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ABOUT

TOILETS The latest instalment from disabled access review site Euan’s Guide, highlights the importance of Red Cord Cards and Changing Places facilities

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t Euan’s Guide we talk about toilets quite regularly.

Firstly, whether or not somewhere had an accessible or Changing Places toilet. Then, if it did have one, what it was like and what we would change about it.

These emergency cords are designed so that they could be used by someone sitting on the toilet or lying on the floor who needs to raise the alarm to call for assistance

Toilets are an important part of the disabled access reviews left on EuansGuide.com, and we always love it when reviewers or venues share photos of the loos with us. That’s because everyone’s access requirements are different, so while you might be looking for right hand transfer, someone else might be looking for a shelf, turning space or high contrast to help identify the fittings. It is true what they say, a picture is worth a thousand words, and a picture of an accessible loo can quickly give people the information they need to be able to decide whether or not they’d be able to use the toilet.

So often venues are let down by their accessible toilet (or a lack of one). Have you ever come across an accessible toilet with a broken grab rail or toilet seat? How about one that doesn’t look like it has been cleaned lately? Gross! Or what about one that is also being used as a storage cupboard?

Sigh.

How handy would it be to know about these issues before you visited and how easy would it be for venues to fix these problems?

One common problem we kept hearing about in people’s reviews was red emergency cords that wouldn’t be of any use in an emergency because they were cut too short or tied up out of reach. These emergency cords are designed so that they could be used by someone sitting on the toilet or lying on the floor who needs to raise the alarm to call for assistance. The problem is that far too many people don’t know what the cord is there for, which is why we designed Red Cord Cards. Our Red Cord Cards are splash-proof cards designed to be attached to all red emergency cords to remind everyone that the cord should be left hanging freely so that it could be used in an emergency. The sign is an important tool to alert all toilet users, cleaners and staff to leave correctly positioned cords as they are and can help signal to venues when the cord needs to be fixed.

Individuals can request free Red Cord Cards from us by visiting EuansGuide.com/redcord. Their size makes them

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easy to carry around so that they can be added to every red emergency cord that you see. Thanks to the help of thousands of people across the UK we’ve already given out over 60,000 Red Cord Cards to help make so many accessible toilets safer. We don’t want to stop there either, we’d love to see Red Cord Cards in every accessible toilet.

Visit our website if you’d like to support us and help make this dream a reality.

Something else that’s a big toilet let down is the lack of Changing Places toilets. We’re a big fan of Changing Places here at Euan’s Guide. A Changing Places toilet includes a height-adjustable changing bench, a ceiling hoist; a peninsular toilet and a privacy screen. There also needs to be space for the toilet user and up to two carers.

These toilets do not replace accessible toilets but should be provided in addition to accessible toilets. For years the Changing Places Consortium has campaigned for more Changing Places toilets to be provided in all public places, including city centres, shopping centres, railway stations, airports and leisure complexes. There are now just over 1,500 Changing Places registered, yet 250,000 people in the UK require access to the facilities found within a Changing Places toilet to be able to go to the toilet safely when they are out and about. Clearly there is still a need for more Changing Places. More Changing Places will mean that everyone will have more options for great places to visit. To find out how you can support the Changing Places campaign visit Changing-Places.org

In the meantime, we’d love it if you could help us shout about the places you find accessible and where they have accessible or Changing Places toilets that you can use by reviewing them on Euan’s Guide. Reviews are a great way to share your experience and recommend those places that you enjoyed visiting. Knowing another disabled person enjoyed their visit is really helpful when planning a trip.

As well as being a place where you can share your recommendations with other disabled people, leaving reviews on Euan’s Guide can also be a powerful tool for change. Did a bad accessible loo or lack of Changing Places let the experience down? Mention it in your review! We’re proud to say that we share new reviews with venues, and we know that the feedback people leave on Euan’s Guide can lead to venues taking action and make changes to improve their accessibility.

If like us, you don’t mind a bit of toilet talk you might want to join our Facebook group where we discuss toilets and share our Red Cord Card adventures. You can find the group by searching ‘Red Cord Cards by Euan’s Guide’ on Facebook. Or visit EuansGuide.com/ toilets to find more ways to get involved.

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pg

he year is drawing to a close.

The days are getting shorter, the nights longer, and the weather colder. Winter, as they say, is coming. Ordinarily, this is when our little ones would begin chattering with excitement over Halloween, wondering what they can dress up as, and getting excited over miniature chocolate bars. Everything is different in 2020, however, and a traditional Halloween seems as likely to happen this year as turning lead into gold.

This is a perfect time, however, to make your own traditions, in your own home, and with your own family. Turn to page 52 for some ideas from Team Pos on how to keep the spooky spirit alive this year.

As usual, we have our great selection of kids’ products and regular columnist Dan White, alongside this issue’s fantastic Future Voices contributor, Zan Godden, who explores their feelings of not being “disabled enough” within the disabled community. If you have anything you would like to see featured in the magazine, please don’t hesitate to email it over to ros@2apublishing.co.uk.

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Medpage Model MP5-UTB High Sensitivity Children’s Bed Seizure Detection Alarm The Medpage MP5-UTB super-sensitive sensor is positioned under the bed or cot mattress where it continually detects body movements from a sleeping person. The detected movements are analysed by computer software that differentiates usual sleeping movement from typical seizure movement. Continuous seizure activity generates an alarm, which is transmitted to a parent alarm signal receiver to warn of an ongoing seizure.

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Haunting AT HOME

BY KATIE CAMPBELL We can’t take to the streets for some trick or treating this year, but never fear: Halloween can never be cancelled. We wouldn’t allow it

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or a heartbreaking six months, the goths, costume fanatics, and lovers of the macabre amongst us have had to come to terms with one single, tragic fact: in the year 2020, Halloween will have to exist only in our dark hearts. From the Bauhaus fanatic who dresses as Siouxsie Sioux six days out of seven each week (resting only on a Sunday to let their skin breathe outside of constant heavy foundation use), to the parent quickly wrapping their child in toilet roll in the face of a school costume day panic; we know and understand that this year, Halloween will be an inside sport.

(WITCH)CRAFTS Can we truly deem a Halloween “spooktacular” if it does not have powerfully spooky decorations? In our humble opinion: if you don’t have at least three bats, ravens or cobwebs around your house on 31 October, you are not truly doing Halloween.

Decorating your home for one single day sounds expensive, but it doesn’t have to be. It’s a wonderful time to get little spooks and spectres in to make some excellent decorations for your home. Orange and black paper chains are a classic, as are pompom spiders. Remember making paper snowflakes

Halloween is fun for little and big kids: some people engage in spiritual or cultural practices, and some just love getting dressed up as Frankenstein’s monster and collecting as much chocolate as they can get their hands on. With the looming presence of coronavirus around the world, and the presence of a second wave rearing its ugly head in the UK, this will be a year of trying to translate our outdoor Halloween activities into fun indoor ones.

If you’re looking for some fun ideas that can be done from the comfort of your own spooky home this year, fear not: the Halloween fanatics at PosAbility have been dreaming up ideas for our very own Halloween Spooktaculars that will have you doing the dance macabre from dusk ’til the witching hour.

at school? Paper cobwebs are the future. If you have any spare tissue paper just lying around - and let’s face it, who doesn’t - you can make some very cute tissue paper ghosts by crumpling one sheet into a ball, wrapping a sheet over the top of it, and fastening it with an elastic band. Draw on some spooky facial features and hey presto - you have your very own Casper the Friendly Ghost! If these ideas are piquing your interest, head to Pinterest, type the word “Halloween,” and get ready to blow your wages on an order of craft supplies from Hobbycraft. posabilitymagazine.co.uk

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CARVE OUT A NICHE Pumpkin carving is as American as apple pie, but the origins of the jack-o’-lantern are a lot closer to home than we know. The tradition was thought to have begun in parts of Ireland and the Scottish Highlands, where turnips were hollowed out and carved with strange faces as a means to ward off spirits who would mean them harm, as Halloween was said to be the day where the aos sí or daoine sìth - the spirits and fairies of the land - could most easily cross from the Otherworld and into ours. We’d recommend you carve a pumpkin, though, because they’re larger (and therefore easier to carve), and you can make the innards into pumpkin pie afterwards.

BAKE THE DEAD For some, a Halloween treat is a mini Mars bar and a handful of monkey nuts. For others, it’s a luminous orange Halloween-themed cake from Greggs, topped off with a ring in the shape of a ghost that you can surreptitiously lick for hours afterwards. Both are very iconic spooky moments.

With the lack of trick or treating, however, monkey nuts may be thin on the ground, and a trips to Greggs might be out of the question. At the beginning of the lockdown, everyone decided this was their chance to refine their baking skills: it is time to reawaken those feelings. Get the oven pre-heated and decide whether this will be the year of the witch cupcake, the pumpkin cake pop, or the blood-filled raspberry jam doughnut. One of the most fun things you can do with children are teach them how to make spiderweb cakes, which sounds very difficult, but is actually just messy fun. If you bake and ice a standard cake (we like a chocolate cake here in the Pos office, but it’s your choice) or some cupcakes, you can then melt down some white marshmallows in the microwave. Wait until they’re lukewarm, then get your spectral assistants to press their fingers together and dip them in the marshmallow. When they take their fingers out and pull them apart, they’ll have spiderwebs that they can pull taught over the cake!

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Refugee Astronaut III by Yinka Shonibare CBE © Yinka Shonibare CBE, 2019 Photographer Angela Moore. Wellcome Collection is part of the Wellcome Trust. The Wellcome Trust is a charity registered in England and Wales, no. 210183. MP-7162.53/-2019/BS

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Modifications can be made, and there are also a number of charities which can help with the purchase of the bike! missioncycles.co.uk 01622 815678

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DODDL 3 PIECE CUTLERY SET The innovative design of this three-piece cutlery set makes it extremely easy for little hands to hold, and the ergonomic handles are designed to make them easier to control than standard cutlery. Available in three fun colours, the cutlery is dishwasher safe, so it’s nice and easy to clean after mealtime. kidly.co.uk

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R82 SCALLOP PORTABLE SEAT Promote a healthier posture while providing reassuring support in this comfy and stylish chair. Easy to assemble, it features a flexible shell, lightweight design, and is highly portable thanks to its two carry handles, allowing you to take it with you on all kinds of adventures. The two cushions can be detached for easy cleaning.

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DISABLED PEOPLE PLAY FIGURES Representation is vital, and children should have access to toys who look like them, and use the same kind of adaptions that they do. This set features a young man who uses a hearing aid, a wheelchair user, a person with leg braces, and more. They are designed to be used in tandem with the Tuff Tray Play, sold separately. sensorytoysuk.co.uk 0330 122 4417 Prices from

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navigate ableist societal perceptions of how a disabled person should look and act.

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.

ZAN GODDEN Zan Godden is passionate about disability, mental health and LGBTQ advocacy. If they aren’t in bed with a fatigue spell, you can find them watching drag queen videos or obsessing over comic books.

Follow them on Twitter at @ZanSaysStuff.

C

an I sit in that priority seat? Should I use the lift to go up just one floor? Will someone yell at me if I use that toilet? Why am I even asking myself these questions?

The idea of being ‘not disabled enough’ is felt by many in our community. It’s a common occurrence for ambulatory wheelchair users to face discrimination if they are seen to get up from their mobility aid, whilst people with invisible disabilities can be interrogated for getting a free carers ticket.

For some, these gruelling examinations of our identities can be a matter of life or death. As it currently stands, the process of gaining Universal Credit is deliberately designed to be exclusionary. I know of far too many disabled people dying after they are deemed fit to work, with the Department for Work and Pensions’ ridiculous reasons for rejection ranging from being dressed smartly to walking up the stairs to an assessment unaided.

Unsurprisingly, I do not qualify for any form of Universal Credit, as my symptoms are not as ‘severe’ as the DWP desires. Also unsurprisingly, I am still very much autistic and constantly fatigued, regardless of whether the government chooses to pay me.

When I am allowed some small ‘perk’ of being disabled, such as a radar key or skipping the queues at a theme park, I have to remind myself that despite the scolding stares from staff or bystanders, I am allowed to have things that make my disabilities that little bit easier to manage.

These accommodations are vital to people like me so that we can alleviate (and sometimes altogether avoid) being consumed by an anxiety attack, sensory overload, or fatigue spell.

I may forever have that inner voice telling me that there is always a disabled person more in need of support than I ever will be. And you know what? They’re valid. And so am I. We are all disabled enough, and must continually challenge the stereotypes that prevent us from getting the support we need to thrive.

I’ve known I was autistic since my early teens; yet I didn’t seek an assessment until I was 18, as I felt I didn’t need additional support to help me through my daily life. In reality, this was because I learned to hide my more overt traits so that I wouldn’t be bullied by my peers. Like many autistic women, I ‘masked’ my disabled self, presenting the world with an acceptable, able-bodied version that could just about cope.

I experienced this disability denialism for the first time when I sought my diagnosis for Chronic Fatigue Syndrome. I remember getting my blood taken after finally finding a GP who took my concerns seriously, how excited I was to get an explanation for why I had been struggling, only for the nurse to comment that my fatigue was likely due to “being a busy university student”. However, the whole reason I plucked up the courage to even see a doctor was that I was too inexplicably exhausted to attend my lectures and was terrified of failing my degree.

I was being gaslighted, like many of us experience as we

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DAN WHITE 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.

A PARENT’S WAR

P

arent carers of disabled children are a stoic bunch, a bit like their kids. I should know, I am one. Parent carers more often than not face battles every day for survival that coincides with a routine of care that is unsupported, socially isolated, and financially and mentally destructive.

I want to take this opportunity to show that we do understand what it’s like living with a disability and we do have the right to speak for our children.

Solidarity is a fine thing, the disabled community thrives on it. So many incredible diverse voices clamoring for equality and respect, adults and children alike. However, there are a few eyebrows raised when parents like

“These images sink into the national psyche and hold our children back, they are not victims, they are children”

myself make noise for our children’s rights.

We love our children completely, we want the absolute best for them in this increasingly ableist world. The problem lies not with us shouting out for our children, the problem lies with ineffective care charities, a media still stuck in “victim” mode, and the worry over a future when we, as parents, are no longer around. I’ll elaborate.

There are so many supportive carers charities out there, but a few seem to lack the bite to chew the locks of the system. It is, as a parent, hugely frustrating when a group supposedly having your back, falters and lacks the will to fight on your behalf. You realise that perhaps poking the beast of politics is a step too far for them, that writing meek and softly worded pleas to power is the most we are going to see, when activism and fire is what we want. It falls down to us to snarl, demand and bang the activist table when we have enough to do just surviving.

The media world seems to be stuck in a perpetual formulaic rut with

childhood disability. We know our children will obliterate any stereotypes, however, their progress is held back by the good intentions of shows like Children in Need. We all know the show has been worth its weight in gold from a monetary perspective, but from a storytelling angle, we are still seeing images of sad children accompanied by a grotesque, inappropriate sad piano soundtrack. This all enforces a stereotype. We live with these kids, we see their spirit and know they will ascend to their best, given belief.

These images sink into the national psyche and hold our children back, they are not victims, they are children.

Children in Need needs an overhaul as its projected view of disabled children is not what we see.

Disability poverty is rife. Parents of all children are concerned about their child’s future, but parents of disabled children are doubly concerned. Access into work, independent living, and care support are wanted for a future that seems, without extensive campaigning, frighteningly unrealistic from today’s standards. Seemingly not a day goes by without a cut to a service they depend on. We live in fear of how the next cut will impact their lives, now and in the future.

We are not politicians, but for a future when we are dust, we have to be political now to secure their prospects.

We don’t rage against the machine purposely to drown out our children’s voices or to upset anyone. We often carry mental health issues and hidden disabilities ourselves. We witness attacks from all sides, we just crave solidarity. It’s just that until those examples of frustration I spoke of move on, until our children are allowed by society to be masters of their own destinies, then we must talk and rage, and use our words to win wars, to parent.

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A

NEW WAYOF

LEARNING

BY PIPPA STACEY

The landscape of higher education looks quite different as students start the new academic year. A mix of attended and remote learning will be the order of the day, which will be a positive for many disabled students, but why has it taken a pandemic to enforce these reasonable adjustments?

I

t’s been a difficult few months for students beginning or returning to higher education. How the next academic year will unfold could be anybody’s guess, but it looks as though the majority of people will be studying at least part of their degree remotely.

To me, that decision makes sense. Students will be able to study from home, because doing so would be in the best interests of their health. However, this very adjustment has consistently been denied to disabled and chronically ill students for years and years.

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Overall, I adored my own time at university, but the challenges I faced due to my energy-limiting chronic illness highlighted a real lack of genuine understanding from my university. Although they were willing to be lenient with my attendance, and recognised the fact that I simply wasn’t well enough to attend all my contact hours, they weren’t even open to discussing whether the lectures I missed could be recorded so that I could watch them and study from home.

Even though other departments offered this by default, the explanation from Disability Services was that the technology set-up this required wasn’t possible for my course. And instead of initiating further discussion as to how we could get around this, their curt suggestion was that if I was struggling to attend contact hours, perhaps I should be taking a year out instead.

At the time, I was of course upset and incredibly disheartened by this response. It wasn’t until years later that I fully realised that it was discrimination too: something that prohibited me from having the same educational experiences as my non-disabled peers.

However, I’d like to think I got the last laugh. I taught the majority of my degree to myself, mostly, from bed, and still graduated with a 2:1 in 2016.

Since then, further discussions with chronically ill students has shown that my experiences were far from unique: far

too many people have struggled to have their needs taken seriously in higher education. Disabled students have been campaigning for years to try and make these systems more inclusive, but progress has been slow.

That is, however, until a certain global pandemic entered our lives in 2020.

As a result of the coronavirus, universities were forced to adapt their teaching methods to accommodate remote learning. The reasonable adjustments that disabled students had requested and were denied were suddenly implemented and fully functional; a change that happened practically overnight, with minimal additional costs to departments.

In all honesty, I spent a good couple of weeks feeling rather disheartened over these changes. There’s something very telling about the fact that universities only felt that these adaptations were necessary once their non-disabled students needed them too.

However, I’m now choosing to see this turn of events as something that could actually be a huge win for future chronically ill students. Perhaps universities being forced to accommodate remote learning could be the window that facilitates more inclusive practice in higher education in the future. Now that we’ve all seen that reasonable adjustments like these can be accommodated, universities simply have no valid excuse not to offer it to chronically ill students moving forward.

As for me, my own experiences of being a chronically ill student led me to think about how I could share all that I’d learned, and all the things I wish I’d had somebody to tell me back then… and before I knew it, I found myself writing my debut non-fiction book, University and Chronic Illness: A Survival Guide.

The book is a comprehensive guide to navigating all elements of student life with a fluctuating health condition.

I’ve aimed to make it a chatty and humorous, yet balanced and informative, resource: one that’s sincere and realistic about the challenges of studying with a chronic illness, yet one which will empower future students to make informed decisions and really get the most out of their time at university.

More than anything else, I hope it reminds chronically ill students that they’re not alone. I get it: it can be so incredibly tough, and there’s still so much work we have to do. However, with the right support in place, I firmly believe it could be one of the very best experiences of your own life as well.

In the meantime, here’s to the new cohort of disabled students beginning their university journey! I believe in you, and I hope you believe in you too.

You can purchase a copy of University and Chronic Illness: A Survival Guide, and Pippa’s new eBook, How To Study Online, by visiting lifeofpippa.co.uk/shop, and you can join in the conversation on social media using #ChronicStudying. You can also follow Pippa on Instagram at @lifeofpippa, and Twitter at @lifeofpippa_.

There’s something very telling about the fact that universities only felt that these adaptations were necessary once their non-disabled students needed them too posabilitymagazine.co.uk

61

Dream JOB GET THAT

WORDS BY JANE HATTON

PLANNING YOUR CAREER

I

n such a difficult post-COVID economic climate, “planning” a career may seem like a futile activity, and a fixed, inflexible plan would certainly do you no favours. But that doesn’t mean we can’t have short term goals and an eye to the future.

In some respects, being disabled gives us fewer options than other people, so we need to put extra effort into finding as many options as possible. A good place to start is with ourselves.

What do we like doing? What are we good at?

Often these two things are similar.

Carry out an audit on what you have to offer – a list of all your qualities, skills, experiences, talents, knowledge and abilities. Don’t forget to include personality traits. Are you a people person? A details person? A problem solver?

Ask other people you know to tell you what they think you are good at. Then have a look at all of these strengths, and see what types of job you would be suitable for. Think as widely as possible, and be prepared for some surprises!

It’s worth remembering that the world of work is constantly changing. When I was at school no-one used computers. Mobile phones hadn’t been invented. Even ten years ago, no-one was interested in social media. New jobs and careers are emerging all the time, with the rise in technology. Technological advances also mean that more jobs are accessible – some can be done remotely, from home. Some can use assistive technology, like voice activation. This means that even jobs which may not have been possible some years ago, now become possible.

In five years time, jobs will exist that we haven’t even dreamt of yet.

When looking at your personal “audit”, think about the kind of work that interests you, or excites you. What would you need to do to move further towards a career in that field? Voluntary experience? A qualification?

Home study is more widely available than ever, and colleges are becoming increasingly accessible. Do you know anyone who works in that field who could give you some pointers or suggest who you might talk to?

Flexibility is the key. Few people stay in the same profession throughout their working life these days. They may mix periods of employment with periods of self-employment or freelance work. They may start one business, and then move to another. Keeping an eye on opportunities is a good idea – sometimes unexpected opportunities arise for gaining additional experience, or moving into a different sector.

One way of being aware of opportunities is through networking. This used to be restricted to face-to-face networking meetings, but now much more networking is done online. LinkedIn is a great site for making contact with people who might be useful, and for being found by recruiters.

There are some really good career coaches around (and also some not so good ones).

If this is something that interests you, make sure the coach understands disability (there are a number of excellent disabled career coaches around) otherwise you will spend a lot of time explaining the realities of your life to them.

Finally, a career path doesn’t have to be a straight line. It is easier to apply from a job than from being unemployed, so it may be worth looking for any job that you can currently do, whilst thinking about the next step in your career.

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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