PosAbility – Feb / Mar 2022 by 2A Publishing

Feb/Mar 2022

MAGAZINE STILL SHIELDING

WINTER PARALYMPICS

CLOSED TO US

Meet three women still shielding to protect themselves and their loved ones

Everything you need to know about the upcoming Beijing Games

Disabled campaigners are trying to return to their city centre after being excluded

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Editor: Rosalind Tulloch Staff Writers: Katie Campbell Designer: Fionnlagh Ballantine Sales: Danny McGonigle

Welcome

CONTRIBUTORS

Sam Renke, Mik Scarlet, Dan White, Tammy Harman, Ian Taverner, Lydia Wilkins, Charli Clement, Melissa Cassidy, Sally Callow

FEB/MAR 22

some great athletes that consistently medal in their respective events, and UK Sport has set a target of 5-9 medals this year. We have the lowdown on all the sports and highlight some of the ParalympicsGB athletes that you should keep your eyes on, turn to page 16.

Ros EDITOR

e are kick-starting 2022 with a jam-packed issue of PosAbility! We are unsure of how we have landed in February already, and even more perplexed that we are still discussing the pandemic two years on from our first utterings of coronavirus, but here we are. March will bring us some muchneeded excitement with the 2022 Beijing Winter Paralympic Games taking place. As a country we may not be topping the medal table at the Winter Paralympics, but we have Like us on Facebook Search for ‘PosAbility Magazine’

With many restrictions now lifted across the country, Lydia Wilkins talks to three disabled women who have been shielding for the last two years to get their take on how the pandemic has affected them and what “Freedom Day” meant in their lives. As spring approaches it is the perfect time to get your kids outdoors, away from their screens, and reconnect with nature, we have a whole host of ideas on page 50. You will also find our Future Voices columnist Charli Clement discussing the issues with “quiet hours” at supermarkets, and hear from 16-year-old Melissa Cassidy who has just become an author of a children’s book.

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 2022 ©2A Publishing Limited. All Rights Reserved. ISSN 2049-2251

Contact Details: 2A Publishing Ltd, 20- 23 Woodside Place, Glasgow, G3 7QL Tel: 0141 465 2960 Fax: 0141 258 7783 enquiries@2apublishing.co.uk posabilitymagazine.co.uk Feb/Mar 2022

MAGAZINE STILL SHIELDING

WINTER PARALYMPICS

CLOSED TO US

Meet three women still shielding to protect themselves and their loved ones

Everything you need to know about the upcoming Beijing Games

Disabled campaigners are trying to return to their city centre after being excluded

We hope you enjoy this issue and we hope, for everyone’s sake, that 2022 is a much better year. Follow us on Twitter @ PosAbilityMag

SUBSCRIBE TODAY... For only £15 for 1 year or £25 for 2 years

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

Cover image: ParalympicsGB

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FEB/MAR 2022 | ISSUE 65

22 WINT

JI N G B EI

PARALY ER

PICS

News, stories, and updates

34 REACHING NEW HEIGHTS

07 FYI

Lydia Wilkins talks to TikTok star Spencer West about how the pandemic led to him becoming a rising star on the platform

12 THREE WOMEN, THREE YEARS Lydia Wilkins speaks to three women who are still shielding to protect themselves and their families

36 HOT STUFF The latest must-have products

15 MINDFUL MOMENTS Sam Renke explains how she’s embraced the practice of mindfulness

16 BEIJING 2022 WINTER PARALYMPICS

38 CLOSED TO US Residents of York are campaigning to have their city opened back up to them once more

Your primer for the upcoming Winter Paralympic Games

43 THE ART OF THE SCAM 20 GOOD MORNING, GOOD BREAKFAST The importance of the first meal of the day

23 COOKFULNESS Ian Taverner teaches us how to make a delicious Mexican butternut squash hash

With scammers using the pandemic as an opportunity to take advantage of people, how can you protect yourself?

46 LOVE YOUR LOOS Euan’s Guide want to make accessible toilets safer for everyone who uses them

25 MIK SCARLET Mik Scarlet shares with us the nightmare of trying to get specialist care as the NHS seems to be collapsing around us

49 KIDS’ CORNER Get back to nature, meet a new young disabled author, see the latest kids’ products, and read updates from Dan White and this issue’s Future Voices writer, Charli Clement

26 THE BIRDS AND THE BEES Check out our guide to bringing a little bit of nature into your lives

31 DEMYSTIFYING ENDOMETRIOSIS

62 SHAKE IT UP ME campaigner Sally Callow of ME Foggy Dog explains why she launched a petition to allow patients to report harmful effects of non-pharmaceutical treatments

Despite being almost as commonly diagnosed as diabetes, endometriosis is still shrouded in mystery

33 BOXING CLEVER We speak to adaptive boxer Luiz Faye who explains why she wants to get more disabled people in the ring

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65 LOOKING FOR OPPORTUNITIES Tammy Harman from Evenbreak gives her top tips on how to make sure you’re not missing the right opportunities in your job search

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FOR YOUR INFORMATION News and stories from around the world

SENSE LAUNCH SURVEY FOR PEOPLE LIVING WITH COMPLEX DISABILITIES

he national disability charity Sense has launched a survey to help better understand the experiences of people living with complex disabilities. This annual survey is part of a pioneering new research project that Sense has launched to help inform the charity’s influencing of government policy as they work towards improving the lives of people living with complex needs. People living with complex disabilities,

supported by family and carers, are being encouraged to complete the survey, which will cover areas including healthcare, employment, the pandemic, their hopes for the future, and what they feel needs to change to make society more inclusive. Richard Kramer, Sense chief executive, said: “The survey is part of a wider research project that Sense is leading on, the first of its kind in the UK, as we seek to learn more about the experiences of people with complex disabilities. “The pandemic has shown how the societal inequalities that disabled people face can lead to disastrous outcomes. We must listen, understand and respond to the needs of people living with complex disabilities if we are committed to improving lives and become a more inclusive society. “We aim to reach as many people as possible to ensure a wide range of voices are heard.” The survey is open until Mon 28 Feb 2022, and you can take part at: surveymonkey.co.uk/r/9RCNS7G.

WHEELPOWER SPORTS FESTIVAL

aking place in Colchester on Thursday 10 March this year, the WheelPower Sports Festival will provide a safe space for anyone living with a disability to discover more about what sports are on offer. The festival is open to children aged five and over, and to adults of any age too. Activities will be split into age groups and the sports on offer so far will include tennis, handcycling, boccia, cricket and sitting volleyball. Each sport will be adapted to your own abilities and siblings are welcome to come along and take part with their brother or sister too. The day is all about having fun, learning new skills and finding a sport that suits you. Each sport will last about 40 minutes, but people are encouraged to go at their own pace and take rests whenever they are needed. The experienced coaches will be on hand to discuss any adaptations required and any support needed. You can sign up at wheelpower.org.uk to secure your place.

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PARA ATHLETES AWARDED BURSARIES

Columba Blango, para athletics Krysten Coombs, para badminton Fin Graham, para cycling Maddie Martin, wheelchair basketball Jack Smith, wheelchair rugby Emma Wiggs, para canoe

Para alpine skier Millie Knight was delighted to receive the bursary: “I am overwhelmed to hear that I am to receive the Nicholas Cheffings Para Athlete Bursary. Thank you so much for selecting me.”

en para athletes have been awarded the Nicholas Cheffings Para Athlete Bursary from global law firm Hogan Lovells.

The bursary, which is now in its fifth year, will provide financial support to athletes hoping to compete in the Beijing 2022 Winter Paralympic Games and the Paris 2024 Paralympic Games. It is intended to help athletes with everything from sporting development and equipment, to coaching, transportation, and nutrition. The athletes who have been awarded this bursary are: Winter sports Shona Brownlee, para alpine skiing Millie Knight, para alpine skiing Neil Simpson, para alpine skiing Alex Slegg, para alpine skiing Summer sports

“It will be put to good use, in what will be a very busy season. I have six new pairs of skis to buy for next season, so I will put the bursary money towards them! Brett (my guide) and I have already competed in World Cup and Europa Cup races, as well as the World Championships, where we have won a Bronze and Gold so far. “If I am lucky enough to be selected, we will then travel to Beijing for the Winter Paralympics. I have never had such a busy schedule but I’m excited to be on this journey.”

EUAN’S GUIDE ARE HIRING

ward-winning disabled access review charity Euan’s Guide are seeking someone to take on the role of communications manager.

This exciting opportunity calls for a candidate who is passionate about accessibility, is a natural storyteller and has communications experience. They are looking for a team member who can plan a strategy, grow their audience, manage activities and measure results. The organisation is based in Edinburgh, but the team are currently working from home and going forward will be implementing a hybrid home and office working arrangement. They offer flexible working and promote a culture of value and inclusivity within the charity. If you hold the skills and experience to take on a role like this, why not check out EuansGuide. com to find out how to apply. Applications are open until Mon 21 Feb 2022.

Photo: ParalympicsGB

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QEF’S MOBILITY OPEN DAY 24 March 2022

QEF’s experts will be offering a range of FREE mini assessments for children and adults, including: • driving an adapted car on their private track, no licence needed (for 15 year olds+) • Tryb4uFly for those thinking of flying

EF Mobility Services are holding their first postpandemic Mobility Open Day on 24 March in Carshalton, South London. It will be packed with free expert assessments, helpful information and specialist exhibitors demonstrating the latest mobility equipment. The celebrations are part of QEF Mobility Services’ 40th anniversary, commemorating the company opening the first mobility centre of its kind to the public in 1982.. Since then they have supported over 200,000 people with mobility advice and provided 35,000 assessments.

• wheelchair and scooter assessments • transfer and seating solutions • children’s assessments including car seats and Bugzi - a mini powered wheelchair Places are limited so book early. Call 020 8770 1151 and quote ‘March Open Day’. qef.org.uk/mobility

LATEST

TWEETS

Eugene*Grant @MrEugeneGrant Thank you, @marksandspencer. It’ll be nice taking my daughter to buy sweets that doesn’t unintentionally help to normalise a slur used since the Victorian Freak Shows we were paraded at and which is still often shouted at us in the street and from moving cars. Dan White @DanWhite1972 Currently having two parents working is NO guarantee of getting out of poverty. NOT everyone CAN work due to a physical or mental disability. Just papering over the cracks with crass & offensive sound bites. #Wages #BorisJohnson #inflation

Winter Rose @Prismatic85 I have Autism, epilepsy, asthma, and systemic Lupus. Just because COVID means nothing to you doesn’t mean it won’t kill me. I provide therapy to kids with disabilities. They need me, and so does this fluffy boy. Be kind. #chronicillness #IHaveAPreexistingCondition

DiscussingFilm @DiscussingFilm Peter Dinklage calls out Disney’s ‘SNOW WHITE’ remake, saying “you’re progressive in one way and you’re still making that f***ing backwards story about 7 dwarfs living in a cave together… Have I done nothing to advance the cause from my soapbox?

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WINTER WONDERWHEELS POWERED BY MARVEL

art of the Superhero Series, an all-inclusive family fun event, the recent Winter Wonderwheels powered by Marvel took place at Dorney Lake, Windsor. The event is the UK’s only mass-participation sports series dedicated to people living with disabilities, with participants aged from two to 72 taking part in the fun competitive event. The event brought people with all kinds of disabilities together to compete in a unique, solo or team challenge; cycling, walking, running or pushing 1km, 5km or 10km. The event has no restrictive rules and regulations and encourages participants to use any method of support required to complete their challenge - all ‘gadgets and gismos’ were welcomed on the course, from day chairs and adapted or standard bikes to walking frames and trikes. Participants could also choose between flying solo or teaming up with ‘Sidekicks’ (non-disabled family and friends) to take on the unique challenges with as much or as little time and support as needed. With a huge emphasis on fun, Winter Wonderwheels participants and their ‘Sidekicks’ were also encouraged to come along dressed as their favourite Superhero with a dash of festive sparkles.

In addition to the three challenges (1km/5km/10km), was the “celebrity race” for members of the public who won the chance to unite with high-profile Celebrity Team Captains from TV and sport by sharing their super stories. This year’s event saw celebrities including Bake Off star and TV presenter Briony Williams; Paralympic equestrian Sophie Christiansen; Paralympic cyclist, Megan Giglia; Paralympic canoeist, Anne Usher; Paralympic field athlete Stephan Miller and Military Parasport athlete Dave Henson lead competition winners in their very own teams as they completed the course. Quest, one of the UK’s leading suppliers of therapy, rehabilitation and adaptive cycling equipment attended, and managing director Rob Henshaw commented: “Winter Wonderwheels is one of the highlights of our year here at Quest and we are delighted to once again be part of this growing event. It is amazing to see so many children and adults taking part and this year’s event was a great opportunity to catch up with lots of friends, many of whom we have not seen face to face during the pandemic. Watching so many people using our equipment and clearly having a great time was incredibly rewarding.” If you consider yourself to be a Superhero or have a Superhero in the family who would love the chance to take part in the future, sign up for the Superhero Tri which takes place on 22 August 2022. The virtual At Home Superheroes commences on 23 July 2022. More information on both events is available at superheroseries.com. You can find out more about cycling solutions from Quest at quest88.com.

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AUSTRALIAN OPEN OFFERS UNIQUE EXPERIENCE FOR VISUALLY IMPAIRED SPECTATORS

he Australian Open tennis tournament was the first major sporting event to offer a unique technology that allowed visually impaired spectators to enjoy the game through Action Audio, a technology built in partnership with AKQA. Action Audio is a world-first technology that uses real-time ball monitoring technology and spatial sound design to gives audiences insight into every movement on the court. It emphasises ball trajectory, proximity to line and shot type (forehand or backhand), allowing visually impaired audiences the ability to follow all the action through sound as it happens. The technology was initially trialled last year at the Australian Open following a two-year process in which members of the blind and visually impaired community in Australia were consulted to help evolve the technology. Tim Devine, AKQA APAC executive innovation director, commented: “The real innovation of Action Audio is that it requires very few new tools to implement. Our vision is that Action Audio will be rolled out to support many more sports codes and radio broadcasts around the world.” Tennis Australia head of innovation Machar Reid said: “We’re incredibly proud to be strengthening our commitment to accessible experiences at the Australian Open with Action Audio, and this year the live audio experience will be available for all centre court games. When tuning into AO’s live digital radio, thousands of blind and low vision fans will be able to follow the on-court action in real time, enabled by this groundbreaking use of technology. “Action Audio is essentially a new language being created to transcend sport. It enables us to augment the live radio broadcast and changes the way blind and low vision sports fans can participate in live sports entertainment.”

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THREE WOMEN, THREE YEARS BY LYDIA WILKINS

It’s been almost three years since the start of the pandemic, and despite restrictions being lifted, some people are still shielding to protect themselves and their families. Lydia Wilkins spoke to three women who feel forgotten in the urge to move forward ost of us thought that the pandemic would be “over and done with” quickly, and not something lasting years. COVID-19 has impacted every single one of us, but it is those who are shielding in the UK who have been impacted more than most. Though the programme officially ended last year, some have decided to continue shielding. We spoke to three women who have continued shielding to protect themselves and their families to explore what their lives are like on the eve of the third year of the pandemic

GEORGINA GROGAN

Georgina Grogan, 27, is an online creator who lives with ME and chronic back pain. Georgina works for herself and from home; with a high-risk parent, she chose to shield. “A few months earlier I had just got an electric wheelchair and had started going out a little more,” she said. “Due to my chronic pain and fatigue, I was only going out a maximum of once a week anyway, but I felt a little frustrated at having

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to stay in for what I thought would be a few months.” When Freedom Day - the date in July 2021 when the majority of restrictions were lifted in England - came around, Georgina felt “extremely frustrated” with the government. She said: “It was so hard seeing people out and about. I fully understand everyone has different circumstances and has to do what›s best for their own mental health, but it was very hard to see some people going literally everywhere and anywhere they could. I do often think to myself if they, unfortunately, got COVID, would they even know where from with going and seeing that many places and people?”

AMANDA HEENAN

Amanda Heenan, 49, is an equality, diversity and inclusion practitioner. She has an inherited condition impacting her spine and joints, as well as severe scoliosis which means she has limited lung capacity as well as severe asthma. She was added to the list of shielders around May 2020. “This was extremely stressful at the time, as I knew I was in a very high risk group, given the respiratory distress that people who got COVID were experiencing,” Amanda said. “Our GP practice at the time was extremely unhelpful. But to be

fair to them, I think there was a lot of confusion from the centre, too.” Accessing the COVID-19 vaccine was also difficult, and Amanda needed support from her MPs office as a result. Asked about Freedom Day, she said: “It seems that people are living very different realities, and for me, there was no real difference to day-to-day life. I was also sure that it was highly likely that there would be another spike in infections once the schools started back in September and going into the winter. I really appreciate how desperate people are to get back to some sense of normality, but there are basic protections like wearing a mask indoors, keeping a distance and not gathering in large crowds.” She added: “Freedom for some feels like a harsh sentence to others.”

conditions› on the TV, social media, and to my face - the face of a person with an underlying condition. A person’s death is no less because of this. However, this phase made me feel so, like ‘it’s ok, that was an expected death’. Like we are a separate weaker people. Disposable people.” She continued: “I felt much safer when more restrictions were in place. The more things were loosened, the less I ventured out. I realise that this is my choice to be cautious, but it isn’t my choosing to have a condition that puts me at risk. It also made having personal care assistants harder. People obviously want to get on with their lives, we all do, so the more they were doing socially, the more I had to feel anxious about. People think and say that you can take things at your own pace with getting back out into the world. That’s not the case when you rely on constant contact with others to function. “During lockdown and tight restrictions there seemed some kind of level playing field. We were all going through a similar situation, all over the world. There was understanding and a community feel. I don’t feel that anymore.”

GEMMA

Gemma, 36 is a blogger and crafter who lives with spinal muscular atrophy type two. She was told to shield in March 2020. “Let’s face it,” she said when being asked about her initial reaction to the situation, “being told in written text that you’re at a high chance of dying were you to catch a highly infectious virus that is currently spreading across the world is scary stuff. It’s nothing we’ve ever had to face before.”

...shielders are like everyone else: they have lives and jobs. Some have children to care for or elder relatives that rely on them. They are a significant part of society

Gemma had been out of hospital for two months after admission for influenza, and the concept of COVID-19 being ‘just like the flu’ was not reassuring. When asked about prejudice and misconceptions she faced as a shielder, she said: “There is definitely the assumption out there that those on the shielding list have less of a life anyway, so it’s not a big thing. But shielders are like everyone else: they have lives and jobs. Some have children to care for or elder relatives that rely on them. They are a significant part of society. I don’t know how many times I’ve heard the phrase ‘they had underlying

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what I want in life and what makes me happy. Part of this has been revisiting the idea of mindfulness. Starting with downloading Calm, a meditation app, and listening to a guided meditation each night. It soon became clear that how I viewed mindfulness was all wrong.

SAM RENKE

The practice is not asking you to live in a blissfully ignorant world where you cannot think about the past or future at all. In fact, mindfulness encourages an openness about discussion of death as it is often seen as the best way to awaken us to the preciousness of life.

COLUMNIST

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

MINDFUL MOMENTS f I say the words mindfulness, consciousness and present, what springs to mind? Some of you may instantly connect them to the legend that is Eckhard Tolle and be completely familiar with his works, The Power of Now. Some of you on the other hand, may simply be rolling your eyes and be thinking what a load of woke, pretentious nonsense? Or perhaps, like me, you sit comfortably between the two. I have to say that my mindfulness journey is at its infancy, and I am by no means an expert or a life coach, nevertheless I feel compelled to share with you my experience thus far because, hand on heart, I am already reaping the benefits of this practice. Many spiritual scholars state that happiness and a fulfilled life lies in not dwelling in the past, nor worrying about the future, rather understanding that the only thing we have is the present. The moment just now. Therefore, we should try to take time to stop and be in that moment. Take in all the emotions we feel right now, be grateful for what we have now. Anyone who has experienced therapy for anxiety, such as cognitive

behavioural therapy (CBT), will already be familiar with the concept of mindfulness and learning to become in tune with your present state. When I was introduced to this during my own CBT, I immediately put up my shackles. I almost became angry that the therapist would prescribe mindfulness as a fix for my anxiety. My worries are not irrational, or hypothetical, but based on lived experience. As someone who has brittle bones, my anxiety flares up from external factors outside of my control. I don’t wake up each morning thinking “today is the day I’m going to break a bone”, but I do think and plan my life to avoid unnecessary risks – how can I navigate an incompetent taxi driver who is helping me into a vehicle or roadworks blocking drop curbs? I can’t not think about the future. How then can I practice mindfulness? I always have to be one step ahead, finding ways to safeguard from future barriers, growing old, managing loss of function, battling benefit changes. Initially, I saw mindfulness as a rather privileged and ableist approach. The past two years, like many of you, I have spent in relative isolation. I’ve taken this time to get to know me,

Mindfulness is the practice of simply slowing down, looking around and embracing what we have right now. Letting go of past traumas or future fears even if for a few minutes. To give our body and mind a moment of peace. To take a deep breath and to smile. Oprah Winfrey said: “Every day brings a chance for you to draw your breath, kick off your shoes and dance, so let this be that gentle loving reminder to seize the moment right in front of you, savour it pour every ounce of yourself into it, devote everything you have to it, it’s the only one you ever truly have.” Now, whenever I’m feeling overwhelmed or unworthy. I stop. I breathe. I take in what’s happening in that moment and I take note of my emotions. I ask myself if I am overwhelmed because of what’s happening to me in that second or something that hasn’t yet occurred? Or am I replaying a conversation from weeks ago? Often when I have my mindful moment, I identify that in the present I am safe, loved and grateful. Most of the time I also have a sphynx cat on my lap or head purring loudly, and of course that always helps. I’m not trying to convert or convince anyone to start to practice mindfulness because I had to come to the conclusion on my own terms, in my own time. I would say that taking these baby steps has already improved my anxiety, not fixed or eradicated it, but simply allowed me to regain control and be pragmatic. The journey of consciousness is different for everyone, but I hope by sharing my own experience it may inspire you. posabilitymagazine.co.uk

Downhill – this is a single run down a steep course where the competitors must pass through several gates on their way down. If an athlete misses a gate they are disqualified. The fastest time wins. Slalom – this race consists of two runs of two different courses. The courses are shorter than other events but more technical due to the higher number of gates. If an athlete misses a gate they are disqualified. Athletes complete the two runs on the same day and their times are added together to determine the winner.

BEIJING 2022 WINTER PARALYMPIC GAMES SPORTS 4-13 March 2022

BY ROSALIND TULLOCH

The Winter Paralympic Games are almost here, so it’s time to get familiar with all the official sports that will take place on the beautiful snow-covered mountains of Beijing. Here’s what you need to know to follow all the action

All images courtesy of ParalympicsGB

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PARA ALPINE SKIING

Open to athletes with physical impairments such as: spinal injury, cerebral palsy, amputation or a visual impairment. Athletes may use adapted equipment, for example, sitskiis, single skiis or orthopaedic aids, and visually impaired athletes are accompanied by a sighted guide who uses signals and speech to guide the skier down the course. You will find five events under the para alpine skiing umbrella: downhill, super-G, super combined, giant slalom, and slalom.

Giant slalom – very similar to the slalom, the giant slalom features two different courses, but they are longer and have fewer gates. The number of gates is determined by the vertical drop of the course. The athletes complete the two runs on the same day and the times are added together to determine their placing. Again, if an athlete misses a gate they are disqualified. Super-G – an event of speed. Each athlete takes one race down the course and their final time is used to determine their position. The course is generally longer than the slalom and giant slalom courses, but shorter than the downhill course. Missing a gate will trigger automatic disqualification – you should know this by now. Super combined – this competition tests two disciplines. Athletes compete in either the downhill or super-G and a run of the slalom on the same day. The times are then added together to produce the final winning order. No missing any gates on either course, you know the drill.

CROSS-COUNTRY SKIING Just as it sounds, this is literally skiing across the country. It is an endurance event that tests the power and stamina of the athletes competing. Race distances can range from 1km – 30km (we know the race we would rather compete in) and the races are split into classical and freestyle techniques. The split came after athletes at Innsbruck in 1984 began using a skating method in the race rather than the classical style. In 1992 this new freestyle technique was officially instated.

PARA NORDIC SKIING

Open to athletes with physical impairments or a visual impairment, the events are also divided into: sitting, standing, visually impaired. Events include sprint, short distance, middle distance, long distance and mixed relays for male and female athletes at this years’ Winter Paralympic Games.

This is the collective name for para biathlon and para cross-country skiing (we are unsure why they were shoved under a collective umbrella, but that’s just how it is).

BIATHLON Open to athletes with physical impairments or visual impairments, athletes are divided into three competing categories: standing, sitting, visually impaired. The events consist of either a 2km or 2.5km course with athletes racing the course between three and six times depending on the event they are competing in. These courses also incorporate shooting rounds, athletes will compete in either two or four rounds depending on the race distance, they must hit a target at 10m with a rifle – any misses result in an increase on their overall route time. The visually impaired athletes use the assistance of acoustic signals that indicate their proximity to the target. The Beijing 2022 Winter Paralympic Games will have 18 medal events on offer, female athletes will compete in either 6km, 10km or 12km, and male athletes will compete in distances of 7.5km, 12.5km or 15km.

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FACTS PARA ICE HOCKEY Directly descended from ice hockey, para ice hockey follows the rules of the International Ice Hockey Federation with modifications. Instead of skates the players use double blade sledges that allow the puck to pass beneath, and they have the use of two sticks which have a blade at one end for pushing the puck and spikes on the other end to allow them to push on the ice - that’s right they have two sticks with spikes on them – what could possibly go wrong? Para ice hockey, also known as sledge or sled hockey, is a fast-paced game that is filled with thrill, injury and excitement. Teams can be made up of male and female athletes, although there have only been two female players who have competed at the Paralympics: Bri Mjasund Oejen from Norway in 1994, and Lena Schroeder, also from Norway, in 2018. Teams are allowed six players, this includes the goalkeeper, on the ice at any one time, and the game is played in three 15-minute periods. If you like a fast-paced, reasonably violent sporting experience, then para ice hockey is for you.

Beijing will be the first city to host both the Summer and Winter Paralympic Games Shuey Rhon Rhon is this year’s mascot, a Chinese lantern child exuding warmth and positivity

PARA SNOWBOARD Para snowboard made its debut at the Sochi 2014 Winter Paralympic Games and it proved to be a huge success receiving worldwide media attention. This exciting sport is for highly skilled athletes with a physical impairment, such as spinal injury, cerebral palsy or amputation. Athletes compete in three categories based on functional ability – SB-LL1 and SB-LL2 for athletes with lower limb impairments and SB-UL for athletes with upper limb impairments. There will be a total of eight medal events at the Paralympics, with female athletes competing in SB-LL2 banked slalom and SBLL2 snowboard cross – there are no events for female athletes with upper limb impairments on the roster this year. Male athletes will have events for SB-LL1, SB-LL2 and SB-UL categories across banked slalom and snowboard cross. Banked slalom – the course for this run is preferably a varying natural terrain that offers lots of bumps and dips, a natural U-shaped valley is what they are looking for. Each rider takes three runs down the course and their best time is used to determine their final placing. Only one rider competes on the course at any one time. Snowboard-cross – courses are manmade over a variety of terrain and may allow for construction of approved features to challenge riders. Each athlete does three runs of the course and their best run is used to determine their placing. Only one rider is allowed on the course at a time.

WHEELCHAIR CURLING Introduced in 2006 to the Torino Winter Paralympic Games, wheelchair curling is now a firm favourite with viewers. Teams are made up of male and female athletes, and rules state that a minimum of one female athlete must be on the ice at all times. The sport is open to athletes who have a physical impairment in the lower half of their body, such as spinal cord injury, double-leg amputation, MS and cerebral palsy.

Teams are made up of five players: a lead, second, vice-skip, skip and an alternate. The game is played on a long stretch of ice which has a target at one end called the ‘house’. The aim of the game is to throw your curling stones as close the centre of the house as possible, knocking any opponents stones further away. Each team takes eight shots and the team whose stone is closest to the centre of the house – also known as the ‘button’ – is deemed the winner, multiple points can also be awarded for situations where multiple stones are closer to the button than their opponents. The game is played over eight ends. Wheelchair curlers take their shots from a stationary position with their wheelchair locked and a teammate positioned behind them for stability, they use a delivery stick to push the stone. The only difference in wheelchair curling from the traditional game is that there is no sweeping (an action that helps to guide the stone on the ice), meaning wheelchair curlers must be more precise in their throws.

ONES TO WATCH

MENNA FITZPATRICK (GUIDE KATIE GUEST) Sport: Para Alpine Skiing Category: Visually impaired Classification: B2 Menna Fitzpatrick and her former guide Jen Kehoe, were responsible for winning the only ParalympicsGB gold medal at the 2018 PyeongChang Winter Paralympic Games in the women’s slalom, alongside two silvers and a bronze. Menna now races with new guide Katie Guest, and they will be coming fresh off the slopes from the World Para Snow Sports Championships in Lillehammer, where they won gold in the slalom and silver in the super combined.

FACTS

NEIL SIMPSON (GUIDE ANDREW SIMPSON) Sport: Para Alpine Skiing Category: Visually impaired Classification: B3 Making his debut appearance at this Winter Paralympic Games, Neil Simpson is looking set to show the world what he can do. His guide is his brother, Andrew Simpson, and they have just taken home a silver medal in the super combined from the World Para Snow Sports Championships.

JAMES BARNES-MILLER Sport: Snowboard Category: Upper limb impairment Classification: SB-UL James competed in PyeongChang in 2018 but he unfortunately didn’t medal that year. This will be his second appearance at a Winter Paralympic Games and he will be all fired up from winning two bronze medals at the recent World Para Snow Sports Championships in Lillehammer, Norway. He came away with bronze in the dual banked slalom and a bronze in the team event alongside his teammate Ollie Hill.

UK Sport confirmed a target of 5-9 medals

5 sports 78 events 14 countries 736 athletes

MILLIE KNIGHT (GUIDE BRETT WILD) Sport: Para Alpine Skiing Category: Visually impaired Classification: B2 This will be Millie Knight’s third Games of her career. She made her debut performance at the 2014 Sochi Winter Paralympic Games at the age of 15, making her the youngest ever competitor at a Winter Games. In PyeongChang she won two silver medals and a bronze, and she has just won a gold in the super combined at the World Para Snow Sports Championships in Lillehammer.

WHEELCHAIR CURLING TEAM The five-strong team is comprised of Hugh Nibloe, Gregor Ewan, Meggan Dawson-Farrell, David Melrose and Charlotte McKenna. 2014 saw the GB wheelchair curling team take home bronze, and Gregor Ewan was a proud member of that team. The new line-up combines experience and fresh eagerness from its newest team members, so watch this space.

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GOOD MORNING, GOOD BREAKFAST BY KATIE CAMPBELL

Living busy lives gets between us and breakfast, but there are still options to ensure we can have healthy, quick morning meals

t’s often said that breakfast is the most important meal of the day, but many of us are guilty of avoiding the first meal of the day for a variety of often very valid reasons. Breakfast is a pretty important meal however what meal isn’t - because it helps your body to replenish the energy that it spent while you were asleep on growing and repairing itself. It also helps to boost your energy levels and can be really helpful in bringing essential nutrients into your diet. Quick and simple breakfasts are a great way to start the day, so here’s some to get you inspired.

CEREALS

Don’t knock the age-old stalwart of the breakfast table - breakfast cereal has been a staple of kitchens for ages, with oatmeal and the traditional Native American dish grits gracing tables from the late 19th century. Eaten hot or cold, breakfast cereals can be surprisingly helpful when it comes to getting nutrients into your diet. A lot of cereals (mostly the ones aimed at adults which lack colourful mascots, unfortunately) are fortified. Fortified cereals have vitamins and minerals added to them to help get them into your diet a bit easier. This is helpful, for example, if you’re vegan or vegetarian: a lot of breakfast cereals are fortified with vitamins like B12, which some people following these diets may find a bit difficult to locate in other foods outside of things like nutritional yeast and so forth. Fortified cereals are also a great way of getting other B vitamins and iron into your diet. Additionally, cereal can be fairly low maintenance, low energy meal that’s ideal if energy conservation is on the cards. If the thought of cooking a full meal is a lot, a cereal like Weetabix in some milk that’s been gently heated in the microwave is filling, relatively healthy, and warming. Plus, you can add a little dried fruit or a little sprinkle of sugar to it, making it better suit your tastes.

Quick and simple breakfasts are a great way to start the day, so here’s some to get you inspired

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PRE-PLANNED BREAKFASTS

A few years ago, overnight oats were all the rage when it came to fairly healthy breakfasts, and they’ve remained very much “a thing” as tastes and times have changed. They are precisely what they say on the tin: it’s a method of making oats that requires no cooking. Instead of making oats in the microwave or on the hob as you would usually do, you let them sit in a liquid of your choice to soften up overnight, and when you get to them in the morning, they’re ready to go. Overnight oats are a little denser and stodgier than their warm iteration, but they still make for a fantastic breakfast treat that fills you right up. A lot of recipes that you can get online will give you great advice for toppings and things to add in that make your breakfast a little more exciting. For example, a lot of recipes call for chia seeds, which give the oats a softer texture and add a visual element. You can add honey, maple syrup or agave for sweetness, use plant-based milks, add a little Greek yoghurt for extra protein, and top it off with loads of lovely fruits and spices to flavour it to your tastes. It makes for an incredibly versatile recipe, and ensures you have a nice meal to start your day ready for when you wake up!

ON THE GO

There are lots of great options now for “on the go” breakfasts that you can take with you if you don’t have a lot of time in the morning, or you need something that doesn’t take a lot of energy to prepare. Instant porridge is available in a variety of flavours, and just requires a bit of hot water before it’s ready, so it’s great for keeping in the drawers of your office or the cupboard at home if you need a fast or easy breakfast that’s still filling and pretty good for you. Breakfast bars can also be a nice treat if you need something quick - cereal bars are available in a wide assortment of varieties. Supermarket shelves run the gamut of big-name cereal bars like Frosties or Rice Krispie squares, to Belvita bars available in an assortment of flavours. These are great if you don’t have access to a microwave or kettle, and can easily be kept in a bedside table or desk drawer at work.

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

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Cookfulness BY IAN TAVERNER

Ian Taverner is the author of Cookfulness, the cookbook designed for those living with chronic illness and pain. Every issue Ian will be contributing an exclusive new recipe, complete with his unique cooking format and hints and tips to allow everyone to make tasty, nutritious meals in their own kitchen, and in their own time.

MEXICAN BUTTERNUT SQUASH HASH A seasonal spicy brunch, lunch or main! Give Yourself Time – when you need to take extra time, take a step back, breathe and re-Cookfulness yourself KEY – steps marked for when something really important is needed Hints & Tips – to help you throughout and after Cookfulness Playlists – get your best tracks going! Difficulty rating: **** Serves: 4 Cooking time: 40mins

YOU WILL NEED Knife Chopping board Deep wide frying pan and lid (use foil if no lid) Weighing scales and bowl

Preparation time: 20 mins Give yourself time: 80 mins

Zester Baking tray Teaspoon Tablespoon Large mixing spoon Timer

INGREDIENTS 1 tsp chopped garlic (paste/jar/fresh) 1 tsp chopped ginger (paste/jar/fresh) 2 tbsp olive oil 260g butternut squash cut into rough 1-inch cubes (1 small whole one or use ready prep/frozen) 1 small white onion roughly chopped (use frozen too) 1 tsp smoked paprika 1 tsp dried chilli flakes 1 tsp ground cumin 1 yellow pepper roughly chopped (frozen mixed good too) 3 inches of chorizo sausage roughly chopped 2 handfuls fresh spinach 1 lime zested and juice 4 eggs 400g chopped tomatoes Handful of fresh coriander Salt and pepper Chunky bread and sour cream to serve

HINTS & TIPS

Use frozen butternut squash chunks, sliced onion and peppers to help reduce chopping strain

Get help if trying to chop a whole butternut, they can be tricky

You can freeze the cooled pre-egg mix and use whenever you need, just reheat and add eggs!

WAYS TO CHANGE To make the dish vegan, remove chorizo and eggs, replace with kidney beans or mixed beans Roast the squash with additional spices on top for extra punch!

METHOD KEY Pre-heat the oven to 200c/180c fan Spread the squash onto your baking tray, pour over half the olive oil, season with salt & pepper and roast for 20 mins KEY Set timer for 20 mins Remove and set aside In the frying pan add the remaining oil, chorizo, onion, garlic, ginger and fry over a medium heat for 5 mins to just colour the chorizo Add the squash, smoked paprika, cumin, chilli flakes, lime zest and juice and stir to combine Add spinach and chopped tomatoes, season with salt and pepper and combine well KEY Simmer uncovered on a low heat for 5 mins With the back of a spoon create 4 wells in the mix Break an egg into each well, keep the heat low, put the lid on KEY set timer for 6 mins and simmer for 6 mins After 6 mins check the eggs are cooked but still wobbling, if not, replace lid for a further minute Remove lid, sprinkle with fresh coriander and serve with chunky bread and sour cream Follow Ian’s Cookfulness journey on Twitter, Instagram and Facebook all @Cookfulness Cookfulness is available in hard copy and e-book on Amazon / BookshopUK / Waterstones

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CLAIM SEX TOYS BACK

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MIK SCARLET COLUMNIST

Follow Mik on Twitter

WHEN THE NHS FAILS YOU, WHAT DO YOU DO? ’m writing this in shock. For a few years now, I’ve been experiencing an increase in the levels of pain I have and the frequency and length of time that the pain becomes almost unmanageable. I kept fighting to see pain specialists and had repeated appointments with the spinal team who look after me, all of whom were very clear that my pain was due to getting old and the general wear and tear of being disabled. It was something I’d have to live with. This was tough to hear but I accepted it as the truth. I took steps to up my health, taking up yoga, exercise and I started handcycling. I started to feel stronger although the pain didn’t get much better. In 2019 I had a bad car accident on the M1, and after that the pain got worse. Again, everyone seemed adamant that the accident had caused no injury and the pain was due to mental health issues, caused by having to live with such high levels of pain. A typical disabled person’s catch 22: you’re in pain which makes you depressed, so your pain is harder to cope with which will make you more depressed. Great. I was given antidepressants, but these made the pain worse not better. Then one day out on my handcycle, something in my back cracked and the pain jumped from eleven (Spinal Tap reference there, the classic film comedy, not the procedure) to so ridiculously bad I screamed in the street. I limped home and ever since it’s been a new level of bad. I insisted I saw someone, despite my spinal team refusing to see me and instead of

@MikScarlet

prescribing more anti-depressants that turned me into a zombie - and that did nothing for the pain. After months of fighting, I was seen by the local MSK (bones and muscles) team and was given an x-ray and MRI of my lower spine. I had hoped they would find something, but something small and easily fixed. In the dead zone between Christmas and New Year my mobile rang, and it was someone from the MSK team in a real panic. It transpires that I was right, that something was wrong. As the conversation went on I became really scared, as the person on the other end of the phone told me my spine was collapsing at the L5-S1 vertebrae. He asked if I had lost sensation and function, and I explained that it was just the pain, but he was very concerned that this was a real possibility. The pain was being caused by nerve roots being crushed as my vertebrae collapsed. He said that I should be seen by a surgeon quickly and he would try to arrange that and ring me back. About two hours later,

“...my mobile rang, and it was someone from the MSK team in a real panic. It transpires that I was right, that something was wrong”

he did ring back (never a good sign, a call back that quickly). He’d tried to get my current spinal specialist to see me but the specialist had refused, stating they had no slots due to COVID, so he would try to get me referred to another spinal specialist at another hospital. After many weeks waiting with no idea what was going on, in fear of what my future might hold, I get an email stating that this new specialist also won’t see me and I should see the team that usually deal with me. The one that had already refused to see me. I’m writing this while waiting to speak to my GP to try to find out what to do, as no one seems to be willing to speak to me, let alone treat me. As I said at the start, I’m in shock. Is this where we are now? Has the NHS been crushed and overloaded so much that a patient with an urgent condition, that could be life-threatening or lifechanging at the least, can be passed around like a live grenade, each person throwing it to the next trying to get away from it? In my life I have seen the NHS wax and wane in its service due to funding and crisis after crisis, but I have never been in this position. Left with no one prepared to treat me, unless I fight to be seen. I’m left in pain, with no idea what to do and what my future might bring. The worst thing is I bet lots of disabled people all over the country are in the same boat. There’s no happy message at the end of this article. All I hope is that by the next issue of PosAbility I have better news. I suppose the one silver-lining is that no matter how extensive the surgery might be to fix me, with the struggle to get seen I’ll be happy to have any treatment. Maybe that’s the plan behind this? No, I think we’re just the canary in the mine, showing that the whole healthcare system in this country is being ground down to a point where it fails.

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THE

BIRDS

Bees AND THE

BY ROSALIND TULLOCH

The therapeutic art of gardening is not only good for you, but it is also good for the environment. The health benefits of gardening or cultivating an area for plants, flowers and nature in your home or garden can be seen in both your physical and mental wellbeing. The practice of growing plants, herbs, flowers or simply keeping a houseplant alive, can offer a purpose for many and the sense of achievement is hugely positive and rewarding. Encouraging more nature into your outdoor spaces can be very enjoyable, as well as great for the world around us, so take a look at some ideas for cultivating your own little havens of nature and start welcoming the birds and bees into your life.

Seed bombs

A wonderful way to brighten up any lifeless spaces, seed bombs were designed to be thrown onto sparse areas to brighten them up and help encourage bees and butterflies to frequent them and pollinate. The beauty of seed bombs is that there is no planting required, simply pop them on the earth, add some water and watch them grow. You can now buy small seed bombs that contain wildflowers, poppies, seeds to attract bees, the choice is yours. Peace with the Wild | £15

Easi-Grip Garden Tools

The angled handle on these tools allows users to keep their hand and wrist at a comfortable angle, reducing strain and blisters. The full range of gardening tools include trowels, forks and rakes, and they also offer an arm support cuff for greater support, and long-handled tools for extra reach. Complete Care Shop | £15

Smart Garden 3

This incredible, innovative, indoor garden will provide you with fresh, home grown herbs all year round. It uses biodegradable plant pods (much like putting coffee pods in a machine), that you place in the smart device, fill the device with water, switch on the energy efficient LED lights and watch your herbs grow, thanks to perfectly calibrated automatic watering, light and nutrients. Amazing. Click & Grow | £119.95

Alessia Metal Balcony Planter

Ideal for brightening up balconies or windowsills, these metal planters are great for bringing colour and life to smaller spaces. They are lightweight for easy manoeuvrability and have a 7.5l capacity. The two hooks allow the planters to be hung over railings, fences or windowsills to complete a colourful springtime look. Wayfair | £39.98

o. N~

Botanical watering can

This beautifully ornate watering can is the perfect companion for keeping your indoor plants healthy and hydrated. It is perfectly balanced, has a long pour spout for accurate pouring and is lightweight to allow for easy lifting. It will also look stunning sitting on your shelf or windowsill. Oh So Cherished | £19.99

o. N~

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Wildflower seeds

If you do not class yourself as a natural green-fingered god or goddess, but you still want to try your hand at growing real living plants, then we have the perfect answer for you. Simply purchase a packet of wildflower seeds, find a patch of earth in your garden that you want to spruce up, scatter the seeds, cover with a little more earth, water and wait. Ensure you keep watering these and you will see the beautiful fruits of your labour in just a few weeks. Not on the High Street | £3.79

Wildlife Care Set

Invite more of nature’s wonders into your garden with this perfect little hanging set of a bird box, butterfly house, and bug and insect hotel. Your garden will be the talk of the flock when they discover the shelter you have provided with these lovely homes. Simply hang from a tree, fence, or hook and enjoy watching your garden fill with birds and insects. Not on the High Street | £21.99

Bird Bath

This small cast iron bird bath is perfectly sized for small outdoor spaces or balconies. It can sit on the ground or up on a table top, inviting birds to wash their feathers and cool off in the summer months. It is small and ornate but very sturdy, so no need to worry about it blowing over in the wind. Dunelm | £14

Hedgehog House

Can you remember the last time you saw a hedgehog in your garden? Maybe that is because you don’t have a safe haven for them to bunker down and hide from the elements or predators. This adorable hedgehog house is made from untreated wood and bark and will blend in perfectly with the surrounding flora in your garden. Selections | £14.99

Calamondin Orange Tree

This versatile hybrid can live indoors or outdoors (as long as the temperature is not below 12 degrees). It can survive in shade, but will thrive in sunlight, and will produce delicious calamondin oranges – a hybrid between a kumquat and a mandarin. They will be sure to bring a bit of Mediterranean style to your home or garden. Bloom Box Club | £49.99

o. N~

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Bespoke orthoses to aid posture and stability DM Orthotics team of experienced Clinicians can assess, prescribe and measure any product within the DMO® Custom range. These tailormade dynamic movement orthoses® have biomechanical panelling and strategic reinforcements that: • Improve postural alignment • Increase proprioception • Stimulate the neurosensory system The DMO® Custom range is effective for a variety of conditions including Cerebral Palsy, Multiple Sclerosis, Ehlers-Danlos Syndromes, Stroke, Ataxia and Dystonia.

We can put you in touch with our clinical team to see if our orthoses could help in managing your condition. www.dmorthotics.com admin@dmorthotics.com +44 (0) 1209 219 205 Designed and constructed in the UK

TRANSFORMING LIVES WITH ORTHOTICS Clinical specialist orthotist Martin Matthews is a leading authority on the use of dynamic movement orthoses® (DMO) to help manage conditions like cerebral palsy, hemiplegia, ataxia, dystonia and scoliosis. His work and the ground-breaking products his company DM Orthotics develop help transform lives. So, what drew Martin to a lifelong passion for orthotics in the first place and why do they make a difference? I became an orthotist almost by mistake as I originally wanted to be a landscape gardener,” he says. “It was getting a job in a shop selling medical devices that caused me to change direction so, when an opportunity came along to join a three-year block release course in Salford, I jumped at it.” Once qualified, Martin practiced at major hospitals in London before going to Basingstoke and joining an orthotic team with a cross-section of specialisms. Eight years later, his work at the White Lodge Children Centre in Surrey made him fully appreciate the difference orthotics could make to children’s lives and, in 1991 he set up a paediatric orthotic service at the James Paget Hospital in Great Yarmouth and at the Norfolk and Norwich Hospital. His work there introduced him to the use of plastic spinal bracing for children with cerebral palsy. “I discovered that rigid spinal bracing was uncomfortable to wear and didn’t really solve the problem of progressive spinal deformity. When the children came back for their annual “anniversary” casting, their spinal curves had worsened to the point they eventually needed surgical intervention.” Determined to find another solution, Martin began experimenting with a new concept of Lycra® suit. “I wanted to understand the mechanisms and opportunities the new bracing media offered,” he says. A large amount of research and development followed. Martin launched DM Orthotics in 2005 and the company has since established a global reputation for improving neurological dysfunction in both children and adults. “DMOs are very different to rigid, moulded plastic braces as they are totally flexible in all planes, fit closely to the skin and correct body or limb dysfunction by mechanising the muscles. “I realised how very powerful DMOs could be early on when a six-year-old child came to see me with a 70-degree spinal curve. A year later, the curve had reduced to 35 degrees. That’s the difference a good orthosis can make.” For more information, visit www.dmorthotics.com.

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Endometriosis DEMYSTIFYING

BY KATIE CAMPBELL

Despite being about as commonly diagnosed as diabetes in the UK, endometriosis is still shrouded in unnecessary mystery.

ndometriosis is a painful condition where the cells that are similar to those of the endometrium - the layer of tissue that covers the internal part of the uterus - begin to grow in places that they shouldn’t. These locations can include the ovaries, fallopian tubes, the ligaments that hold the uterus in place, and the outer surface of the uterus, but have also been found around the pelvis or as far up as the lungs. This tissue bleeds every month, like the uterine lining, but because it has no means of leaving the body, it becomes trapped. This in turn causes pain, inflammation, and can cause scar tissue to form. Living with endometriosis is different for everyone, but the most common symptoms are pelvic pain which worsens during your period, intense period pain that prevents you from taking part in normal activities, pain during or after sex, pain when using the toilet, and feeling sick or experiencing constipation or diarrhoea. Sometimes, endometriosis can also lead to difficulty getting pregnant, or infertility.

In the UK, there are thought to be around 1.5 million women living with the condition

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Researchers and scientists aren’t certain exactly what causes endometriosis, but they have established a number of treatments to help improve symptoms, which includes taking medication for the pain and using hormonal birth control, or in some cases, surgical removal of the scar tissue. On occasion, surgery may be performed to completely remove the organs affected by endometriosis, such as a hysterectomy - the surgical removal of the womb. There isn’t a set timeframe for the onset of endometriosis, but it tends to appear between the ages of 30 and 40. In the UK, there are thought to be around 1.5 million women living with the condition; trans men, intersex and non-binary

people who have uteruses can also be affected by endometriosis. This makes endometriosis as commonly diagnosed as diabetes in the UK, but comparatively little has been spent on research and education into endometriosis and other reproductive health concerns. In 2020, a parliamentary report revealed that the wait for a diagnosis of endometriosis takes a staggering average of eight years - the same length of time that it took almost a decade ago. 21% of responders visited doctors in hospital for reasons related to their endometriosis as they waited for a formal diagnosis; shockingly, over half went to A&E for the same reason, with over a quarter of responders noting that they had

to go to hospital three or more times until they received a diagnosis. Part of the reason why doctors consider so many differential diagnoses (or other things which could be causing the symptoms) before giving a firm diagnosis of endometriosis is that they consider a laparoscopy (passing a tiny camera through a cut in the stomach) the “gold standard” of diagnosis methods. This is invasive and can come with its own problems, including the risk of infection postsurgery. The same parliamentary report brought up the often-repeated issue that women presenting with pain in GPs or to doctors may be told that the pain is “in [their] head” or that what they are experiencing is, in fact, normal. There are many studies that back this up: a 2008 study from Esther Chen showed women who go to A&E experiencing pain are less likely to be given opioid painkillers. A Swedish study from 2014 showed that women in the same scenario wait

longer for medical attention and were frequently classified as “less urgent” in their need for care. Studies show too that the situation is even worse for Black women, with subconscious racial biases - such as those shown in a 2016 study by Hoffman et al, which provides evidence that there is a racial bias in the treatment of pain.

of women of colour who I know, who have gone to A&E with endometriosis symptoms, or even diagnosed endometriosis, they have been told to have CBT therapy instead. It seems that we constantly have to justify our pain and fight for a diagnosis and support.”

Natalie, a respondent to the report, said: “I was diagnosed with stage 4 endometriosis three years ago. Diagnosis has been incredibly difficult, with GPs not believing my pain, or telling me it’s ‘all in my head’. I’ve had pains in my chest which could be indicative of thoracic endometriosis, yet am constantly told ‘I’ve got anxiety’ or ‘it might be a panic attack’. I know my own body, and I am a personal trainer, yet am constantly undermined and dismissed by healthcare practitioners.

There are also issues with lack of awareness, including both awareness of the disease, and cultural stigma surrounding menstruation. A study by Endometriosis UK showed that 54% of people in the UK don’t actually know what endometriosis is, and a lack of public awareness will have an impact on how people who need support are treated. Alongside this, poor understanding of menstrual health and wellbeing what constitutes a very heavy period, or an extremely painful period exacerbates the issue.

“Even now I have had my diagnosis, I still feel I am fighting to be heard for my pain to be taken seriously. A lot

For more information on endometriosis, visit Endometriosis UK’s website: endometriosis-uk.org

...they had to go to hospital three or more times until they received a diagnosis

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AHEAD OF THE Centre of gravity is translated for easier tilting As the child grows, so does the Little Wave Arc Lightest folding tilt-in-space paediatric wheelchair

0800 101 7004

@kimobilityuk

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Boxing CLEVER BY KATIE CAMPBELL

We speak to Luiz Faye, the UK’s only adaptive boxing coach, about her journey into the sport and her partnership with Gift Fit to bring more disabled people into the ring

ow did you get started with boxing? It kind of happened by accident! I was in the gym doing some rehab work with my personal trainer when I saw the punch bag in the corner of the room. I mentioned that I would have loved to have given boxing a try when I was able-bodied but never got round to doing it. He literally replied, “Why don’t you do it in your wheelchair?” I couldn’t think of a reason why not, so that same day I put on my first pair of gloves and that was it. I was hooked! What has your journey to becoming the UK’s’ only recognised adaptive boxing coach been like? My journey began when I was scouted by the World Boxing Council. They were looking to develop a recreational adaptive boxing programme. I began working with them in May 2019, becoming their first female adaptive boxing coach. In October of the same year, I was asked to go to their annual convention in Mexico to launch the programme. I was given an incredible opportunity to showcase adaptive boxing at the opening ceremony! This was the first time I had boxed outside of my gym and in front of over 2000 delegates including 90 world champions and the heads of boxing for 166 countries! Soon after this, I qualified as a level 1 England Boxing Coach. At this point, I was one of just two people who had achieved this. I then went on to set up Kronik Warrior UK - a non-profit organisation that provides a full

adaptive boxing and fitness programme, aromatherapy and wellbeing support. Could you tell us a little bit about your work with Kronik Warriors? Kronik Warrior UK is more than just an adaptive boxing organisation. We provide aromatherapy and wellbeing support. We believe passionately that boxing and fitness should be accessible and enjoyed by all. For the last two years, we have provided free online adaptive box-fit classes twice weekly which have become the beating heart of our organisation. This has developed into a full online programme with adaptive boxing classes and HIIT sessions. We hosted our first Kamp Kronik weekend in 2021 where members from across the UK came together to experience adaptive boxing in a fully equipped boxing gym, seated Tai Chi, massage, aromatherapy and more! We hope to hold two more weekends in 2022! What drew you to working with Gift Fit? We are pleased and proud to be working with Gift Fit! When the opportunity to partner with them came up we were impressed with their shared passion that Ali and his team had about making exercise accessible, their eagerness to learn more about disability challenges and how they can work to raise awareness and support their clients in becoming more inclusive, too. They are working with WheelPower and are in discussions with a few other companies. If you haven’t already, you should definitely check out their website. To learn more about Luiz’s work and get involved with adaptive boxing, visit KronikWarrioruk.org. Try an online wheelchair box-fit class with Luiz for free on Gift Fit, where you can also find a number of other adaptive exercise classes. For more information, or to join Gift Fit’s growing list of inclusive exercise instructors who teach classes, visit their website: GiftFit.uk.

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Photos: Spencer West

NEW

BY LYDIA WILKINS Meet Spencer West, the motivational speaker who summited Mount Kilimanjaro and has now set his sights on conquering TikTok f you’re aware of TikTok, you probably know of Spencer West, the self-described motivational speaker with almost four million followers on the platform who, at the age of five, lost both his legs to a genetic disease. Spencer is known for climbing Mount Kilimanjaro in 2012, and has since turned his hand to content creation. “Truthfully, I’d gotten on TikTok early in the pandemic,” Spencer said, “and I was like ‘I don’t get this, I’m almost 40, what is this?’” He took part in the ‘tell me you’re short without telling me you’re short’ trend at the time, and recalls: “It sort of blew up - and part of that was because I’m friends with Demi Lovato,” who posted it on their Instagram story. “Ultimately it was an accident! But I’ve been on other platforms for so long that I was like ‘great! We can create new content in a different way for TikTok and use it to highlight my experiences as someone who identifies as gay and also has a disability.’” It is notable how the pandemic has led to something of an explosion of disabled content creators, regardless of the platform. “What is great about social media is that you have the power and the control to share your experience or whatever content you want to,” Spencer said. “What’s

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really great about that is it’s given folks with disabilities a platform that isn’t often accessible to us, meaning we don’t see a lot of representation in the media of folks with disabilities when it comes to everything from journalism to entertainment. And so social media is a way for us to do that ourselves, and to create our own sort of space and to discuss issues, or things, or sex, or whatever it is that we all engage in.” “It absolutely was,” he said when asked if joining TikTok had anything to do with wishing to join a facet of the disabled community. While this may sound to some as much of an internet cliche, it has provided a safe way to socialise, as well as a form of entertainment, distraction and connection during the pandemic. Spencer said: “I think it’s a space where disabled folks can feel seen and heard, and [have] a sense of belonging.” He also added his wish that this is accessible for non-disabled people to take the opportunity to learn from disabled people, and to dismantle their own ableism in the process. “Again, I don’t think we see a lot of folks with disabilities in mainstream media, it’s important for us to say, ‘hey, we’re here, and there’s a bunch of us, we’re all pretty amazing! And also here are some of the things that we care about, and that we need your support with.’” It’s almost as if disabled content creators have sprung up because efforts to diversify representation have not gone far enough. “I think when we look at any sort of social justice movement, two things are needed. I would say the

first thing is that folks that are actually of that community need to use their voices in some regard,” said Spencer, be it through writing, organising, or other mediums. “I think the second part is having those allies that are not a part of the community, that have privilege in other spaces to then provide opportunities, or since we’re talking about disabled folks, for folks with disabilities to come in and be a part of that space.” All of our liberation is tied up together, he reflects, but it takes a community and allies coming together. TikTok users will know that Spencer has chosen two words as his intentions for this year rather than sticking to a New Year’s resolution: present and routine. “I’m always future-thinking. I’m not always paying attention to what is happening to me right now,” he said. Yet in the fastpaced world of content creation, time can pass by quickly, sometimes without realising - Spencer climbed Mount Kilimanjaro a decade ago, after all. Looking back on the experience, he said: “I feel like that was the one time in that time of my life where we were forced to be present.” His only connection had been through periodic updates issued to the outside world on a satellite phone. His tone became almost nostalgic in describing spending several days above the clouds alongside friends, completely cut off from the outside world, only to be thrust back into society upon his return. “I definitely would, for sure,” Spencer said when asked if he’d call himself an activist. For those who choose such a route, sometimes there is emotional labour or cost attached to that. Spencer acknowledges this openly: “This is something that I’ve been learning for myself recently. I grew up in a different era where disability was viewed differently.” Examples he gives are of a society that viewed disability under a lease of what we’d call ableism. Adding to this, he felt that he’d just have to be okay with intrusive and intimate questions. He said: “I actually don’t have to be okay with that - like, I can say no. I don’t have to often: I don’t have to always share my story if I’m at the grocery store, or I’m on a dating app. And so I think we can be intentional, and we can create spaces where we then have the emotional capacity [to be in the educator role].” Follow Spencer on TikTok and Twitter at @spencer2thewest

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Closed toUs BY KATIE CAMPBELL

Residents of York are campaigning to have access once more to their city after new council legislation excluded Blue Badge holders from the Footstreets. he Footstreets in York is one of the largest pedestrianised areas in all of Europe and forms a significant part of the city’s shopping district, full of restaurants, mainstream shops, banks, building societies, churches, doctor’s offices, and other vital amenities. Disabled residents of the city, however, have found the area closed off to them since regulations were introduced

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that prevent Blue Badge holders from driving into and parking in the pedestrianised area. In the summer of 2020, the City of York council temporarily suspended parking in the area, citing “social distancing” as the reason for preventing York’s 7500 Blue Badge holders from parking in the area. Despite significant protest, in November 2021, the Green Party-Liberal Democrat coalition-led council elected to make the suspension permanent, this time blaming the threat of terror. York City Council is now actioning several anti-terror measures to prevent so-called hostile vehicle attacks in the

city, which police superintendent Mark Khan says is a case of “not so much if a terrorist attack happens but when,” and have introduced measures to keep vehicles out of the city - including a ban on Blue Badge parking. Campaigners from York Accessibility Action say this means there is now no suitable parking for Blue Badge holders within 150 metres of the city centre. “Those streets that they’ve now closed off that were previously open were the sort of lifelines to the city centre during the daytime,” said Jane Burton, a disabled resident of York and member of the York Access Association. “It meant that you could park quite near and the distances to walk into the main city centre area - walk or wheel or whatever. They were very doable, not for everybody, having said that. Now, it’s closed off. From going into town about twice a week I’ve only been into town twice during the summer.” Now Jane and many other disabled residents feel that they can only access the city centre after 8pm when cars are allowed back into the area, but as Jane told PosAbility, “8 o’clock is a very late time to open up”. Places where disabled people could easily congregate are now no longer accessible as Blue Badge holders cannot access the Footstreets. Meeting places, like the City Screen cinema or Bettys, the famous tea room, which were previously heralded by residents as favourites due to their accessibility are now no longer options to them between the hours of 10.30am and 8pm as Blue Badge holders cannot park close enough to safely move between their vehicles and destinations. In early 2020, several media outlets, including the Evening Standard reported that York planned on banning “private car journeys from its city centre within three years”. “It’s an interesting point, said Jane. “There was I think an article in the Daily Mail in Jan 2020, and this was talking about making York a car-free city, so that was before COVID. So COVID I think just gave them an excuse to do this, really. Then, once the lockdown was over and they were opening up, it was then given the reason was social distancing and economic recovery. That’s why we couldn’t be there. But what about us and our money? And then when that went out of the window, suddenly we’ve got this hostile vehicle mitigation. And so it’s been one excuse after the other. I personally think that’s because they wanted the car-free city way before January 2020, when that was published. This has been their aim for a long time, but they couldn’t work out maybe how to do it, so this has been handed to them on a plate, in a way. I’m not blaming the COVID emergency legislation as such, it’s their use of it.” Much of the frustration felt by residents and campaigners comes from what they perceive as the lack of exploration of other alternatives. A report by Martin Higgitt Associates, commissioned by the City of York Council and completed in October 2021, lists four alternative ways that hostile vehicle mitigation might be implemented in the city without Blue Badge holders being excluded from the city centre. The report is hugely comprehensive and has

received significant praise for the depth at which it explores the problem. Because of course, the campaigners and residents still want the people of York to be safe, but disabled people should not be excluded in the process. Despite this, a York Green Party statement, which noted that the “safety measures in York’s Footstreets would have a negative impact on people with disabilities” still called their decision “the least worst solution available to them.” “It’s discrimination, pure and simple,” said Flick Williams, a disabled York resident. “I honestly believe that a lot of the councillors don’t understand what they’ve done to us. We’re collateral damage.” Martin Higgitt Associates’ report gages the travel distances between vital locations in the city centre - City Screen, the Post Office, and St Sampsons Over 60s care being just three mentioned - and car parks in the city. Coppergate car park is listed in the report as providing “the best accessibility overall” for Blue Badge holders but is still 320 metres from the Post Office, 391 metres from the St Sampson centre and 470 metres from City Screen. “We’ve pointed out repeatedly that you only get a Blue Badge if you’re unable to walk 50 metres without causing pain and extreme fatigue, basically,” said Flick. However, in mid-January, the Coppergate Centre’s car park was closed for an unspecified length of time after its lifts were vandalised, removing what was the most accessible car park per the report, and access to the city’s Shopmobility, which is located on the centre’s second floor. The York Press reported that the council had advised Blue Badge holders “to use disabled bays in other car parks, and may park for up to three hours on double yellow lines.” This comes with its own set of problems, however. Issues have arisen with Blue Badge holders receiving parking tickets after following advice regarding alternative parking. Flick said: “[The council] said that Blue Badge holders could park on Deangate, which is close to the Minster, as a reasonable adjustment, and nobody does because there were two separate days that we know of where all the Blue Badge holders who parked there got parking tickets after being told it was a reasonable adjustment! Nobody communicated that to parking enforcement, so of course, nobody trusts it now.” As the decision was made in November to permanently exclude Blue Badge holders from the city centre, York Accessibility Action decided to mount a legal challenge in their belief that the council have disregarded the Equality Act to prevent disabled residents from accessing the city fully. “I think there are over 40 people signed up to mount a legal challenge,” said Jane. “And people have donated over £10,000 towards the legal costs as well. “We have this lawyer, Chris Fry, who’s taken the case on, and so we’re being led by Chris and the barristers that he’s consulting with. We feel like we’re in good hands to progress this. But it’s very sad that it’s come to this. I mean, we’re spending so much of our free time battling for a

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disabled citizens of the whole country. “I’m always mindful of the advice that one of Martin Luther King Jr’s mentors gave him, and that was: if you see a good fight, get in it. So in other words, pick your battles, and for me, this is a hill worth dying on simply because it’s such blatant discrimination, and I think other parts of the country are watching York with interest.” A spokesperson for City of York Council said: “This was always going to be an incredibly complex and difficult decision, recognising the many duties of the council to create a safe, accessible and thriving city centre. We’ve made every effort to consult and listen to residents, businesses and local groups over the last couple of years, so we could take into account the many different voices.

human right, to be allowed into our city before 8 o’clock at night. It’s like a curfew.” Flick, who retired from her work in disability services in 2007 is giving up all of her spare time to help reverse the council’s decision. “It has taken over my whole life, it’s all I do every single day now,” she said. “But that’s fine, I retired in 2007 and thought it’s somebody else’s turn now to try changing the world, but this dragged me right back in. And now I’m here, I’m rolling up my sleeves, because I think the pandemic in so many ways has actually set the disability rights movement back 20 years. I feel we’re not just doing it for the disabled citizens of York, we’re doing it for the

I feel we’re not just doing it for the disabled citizens of York, we’re doing it for the disabled citizens of the whole country 40

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“The council has a duty to protect the lives of residents and visitors, and having received clear advice from the police regarding the risk of hostile vehicle attack in the city centre, as described by the Police in the meeting of Executive in November 2021, the decision has been taken to act on this advice. In considering this duty, the Council has had to consider the Equalities Act duties as the Council recognised early on the impact on disabled people by changing Blue Badge parking arrangements. That is why a separate action plan to improve city centre access has been agreed as a matter of priority. “The Council has considered carefully the balance to be struck between individual rights and wider public safety. We fully understand that this will have a significant impact on some Blue Badge holders and to address this, we have agreed to undertake a number of measures to improve access across the city, including the reintroduction of Blue Badge access and parking on Castlegate from September, investment in additional dedicated Blue Badge parking bays in the city centre, improvements to footways and access to toilets, installation of new benches and dropped curbs, creation of a new Access Officer role to lead on future access work, and exploration of the potential for an electric shuttle bus to help disabled people get into and around the city centre. We know that these measures will make a difference for many Blue Badge holders in the city and we will continue to engage with residents on these issues.” Residents of York who wish to join the legal case can do so by visiting forms.gle/rPZYiwDfFHpgEdbA7, or by emailing YorkAccessibilityAction@gmail.com to request a paper copy. If you’d like to support the residents’ legal challenge, visit CrowdJustice.com/case/ClosedToUs.

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Scammers are using the pandemic to take advantage of people - what do you do if you or someone you know falls prey to fraud?

y the middle of 2021, UK Finance reported that instances of unauthorised remote banking fraud that is, where someone with criminal intent gains access to someone’s bank account and transfers out money - had increased by a staggering 68% on the previous year. Scammers capitalised on people’s isolation from friends and family - especially vulnerable people - to take advantage of them for financial gain. Fake vaccine appointment texts, fraudulent messages about a PCR test that was never taken coming back positive, scam emails from the “government” telling people they are eligible for financial support as a result of the pandemic - the list goes on. While people have been working harder than ever to get by in these - excuse the parlance - unprecedented times, scammers have been working smarter to separate those hard working people from their money in the slimiest possible ways.

texts or even voicemails from “HMRC” claiming you owe money! Even experts can be bamboozled by scammers YouTuber Jim Browning, whose entire channel is dedicated to exposing scammers and helping people who fall victims of their schemes, lost said channel last year after being tricked into giving up his YouTube page by a very convincing scam artist!

Even experts can be bamboozled by scammers

For some people, it’s immediately obvious when they’re being scammed. You might be one of those people who immediately Googles an unknown phone number after you miss a call from them instead of phoning them back, or knows to never accept a friend request from someone you don’t know on Facebook. Scammers are utilising the pandemic to create new opportunities to defraud people, too: you may have received a text claiming to be from the NHS which ask for bank details or home addresses, or fraudulent texts from “the police” issuing fake fines for breaking lockdown regulations. For those not in the know, it can be absolutely terrifying to get a text which will have a decisively negative impact on your life, like the fake fine

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WHAT TO LOOK FOR

with supposedly massive returns;

According to Independent Age, there are six tell-tale signs that indicate that someone may be the victim of a scam:

Pension scams, which operate similarly to investment scams but specifically involve pensions;

A large amount of junk mail, owing to scammers having sold their personal details to others of their ilk; Lots of strangers visiting their home or calling them - this is also due to their information being sold; A sudden lack of money, as scammers may have forced them to buy something, like gift cards, or take large sums from their bank accounts; Defensiveness when speaking about finances, due to embarrassment or anger stemming from the above, Lots of deliveries at their home when there wasn’t before; Unnecessary work being done to their house, due usually to scams from rogue traders.

HELPING AFTER SCAMS

It can be really embarrassing to be a victim of a scam; while it’s not something anyone should feel embarrassed about, there’s a sense of real shame that comes with “falling for it”. But scammers are experts in spinning a convincing story, and what’s important is that, if a person becomes the victim of a scam, that they get the right kind of help afterwards to make sure it never happens again. It’s important to try and work out which variety of scam they’ve been a victim of. Independent Age lists these as some of the main types of scams that people unfortunately fall for: Investment scams, where people are offered investments

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Phone scams, like fraudulent calls from people pretending to be from Microsoft, or accidents you were never involved in; Post and email scams, like lotteries or prize draws, pyramid schemes, or phishing emails that try to get you to tell them your bank details; Doorstep scams, like bogus callers and rogue traders; Relationship scams, where a person tries to get someone to enter an online relationship with them under the guise of extorting them for money or expensive gifts. If the scam has already taken place - for example, the person has already given their details or sent money - it’s not too late to do something. Reporting it to the police is the first step, and consumer rights websites like Which? and Citizen’s Advice can walk you through the process of helping someone to try and get their money back. If the scam was very recent, you can also call the victim’s bank, who may be able to put a stop on their card or even the payment. Reporting it to Action Fraud can also be helpful, as they can provide support and help stop the scam going further. Victims should also seek practical and emotional support; if they’re in England or Wales, Victim Support can help those affected by crime, including scams. Mind’s helplines can also offer support and provide information. If you’ve been affected by fraud and need support, contact Victim Support through VictimSupport.org.uk, and report the incident to Action Fraud on their website: ActionFraud.police.uk.

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LOVE YOUR LOOS Euan’s Guide is the disabled access charity behind EuansGuide.com, the disabled access website helping disabled people find and share great places to go. We’re much more than a website and one of our most successful campaigns is making accessible toilets safer. We have distributed over 100,000 of our Red Cord Cards since 2015 – that’s a lot of safer accessible loos! But we want to make every accessible toilet safer and here’s how you can help us, whether you use accessible loos, or if you have a venue with an accessible loo that visitors use!

SET THE CORDS FREE! Accessible toilets come in all different shapes and sizes but sometimes disabled people are faced with the same issue time and time again. By far the most common complaint we hear about accessible toilets are red emergency cords being cut short, not present, out of reach or tied up. This means somebody in an emergency might not be able to use the cord and raise the alarm to ask for assistance. Some people can end up stuck for extended periods of time without any other way to ask for help. “I have spent 20 minutes collapsed on the floor unable to get help because of the red cord being tied up in a hospital outpatient toilet and it’s just awful being unable to get help. Having this card and being able to display them will hopefully prevent others from experiencing the same as I have.” – Nikki Red emergency cords are designed to be a way for someone to safely and easily alert people outside the toilet that assistance is required. The red cord needs to be easy to reach for someone sitting on the toilet or lying on the floor.

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OUR RED CORD CARDS

You might have spotted our Red Cord Cards in accessible toilets before. These pocket-sized, splash-proof notices in easy-to-read font raise awareness of safety in accessible toilets and slide easily onto red emergency cords. The card says: “This red emergency cord must hang freely to the floor. If it does not, it may prevent a disabled person from asking for help.” “I think this is a great initiative. Every time we go swimming, my daughter points out that the red cord in the changing rooms is hooked up high. Every time we put it down. I am going to put these on the red cords at our local swimming pool.” – Anna

THE BIGGER, THE BETTER

Reviewers on Euan’s Guide will often mention how much space they had to move around when using an accessible toilet, or if the door was heavy and whether it opened inwards or outwards. Some toilets might make it difficult to get in and out or could have a poor layout. And yes, ‘the bigger, the better’ also means a mirror in an accessible toilet long enough for somebody standing or sitting!

WELL PRESENTED

The toilet in an accessible loo is to be similar in height as a wheelchair so that transferring is as easy as possible. It is essential to have grab rails for maintaining balance when transferring to the toilet and they must be secure and easy to raise or lower when sitting down. People tell us that it’s ideal to have the toilet flush on the side nearest to the transfer space to make it easier to flush the toilet. That transfer space, left or right, enables wheelchair users to move and align with the toilet, use the grab rails and move onto the toilet. The position of the sink is important too. Ideally it should be positioned next to the toilet and fitted at a height that allows somebody to position their legs beneath. Necessities such as soap should be within easy reach and it’s really useful to have a shelf where people can put their items or essential equipment. That also includes having paper towels next to the sink with a disposal bin underneath but conveniently to one side of the sink away from the toilet. It’s a good idea for the loo to be fitted with a RADAR lock so that it’s locked at all times to ensure facilities are kept clean and tidy and readily available. Please make sure that your team have a spare RADAR key (and know what it’s for!) in case any disabled visitors forget theirs. It’s important for toilets to have good, clear signage so people know exactly where the toilets are.

CLEAN AND TIDY

The most common problems people face when using an accessible toilet are the facilities being unclean or cluttered, or not having enough space. Sometimes loos are used as a storage cupboard or not how they’re intended to be used, which can cause several obstructions for transfer spaces or getting in and out of the toilet. Reviewers have spotted several unusual items in an accessible toilet: traffic cones, bikes, items of clothing and even staff holding a meeting.

It is important to keep a transfer space clear of bins and other items. Random obstructions in a transfer space make it difficult for wheelchair users to get close enough to transfer in the way that works for them, making the toilet difficult or impossible to use. A wheelchair user must be able to reverse into the space and right up to the rear wall to make the transfer seamless, meaning nothing should be in the way and everything should be clean.

DISCOVER CHANGING PLACES

Standard accessible toilets might fail to meet the needs of your disabled visitors. Over 250,000 people in the UK require the use of a Changing Places toilet and there are over 1,500 Changing Places located across the UK. Changing Places are more accessible than standard accessible toilets as they have additional equipment and enough space for a disabled person and up to two carers. If you’re in charge of a venue, consider installing a Changing Places toilet. Changing Places toilets should be provided in addition to a standard accessible toilet and will have a centrally placed toilet with room to manoeuvre on either side, a height-adjustable changing bench, a privacy screen and an overhead track or mobile hoist.

SAFER TOILTET STARS Become one of our Safer Toilets Stars and help us spread the word about making accessible toilets safer. Start today by ordering a pack of Red Cord Cards and set the cords free! Go to www.EuansGuide.com/SaferToilets and tag us on social media @EuansGuide when attaching your Red Cord Cards to red emergency cords in accessible loos!

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t may only be February, but we can already feel the benefit of longer evenings and most of us are eagerly anticipating the better weather and springtime feelings. It’s the perfect time to get the family rounded up to explore your local parks and forests. It may be a struggle to get your kids to put down their tablets, phones or other screen devices, but it will be worth it to encourage them back into nature. You can find accessible trails or get them involved in making bug hotels for the garden, fun for everyone.

Melissa Cassidy is 16 and lives in Glasgow; she lives with cerebral palsy and she has just become a self-published author of her very own children’s book. Find out all about her journey on page 59. You can also read a column from young disability activist Charli Clement where she discusses the issues behind “quiet hours” for people living with autism. Don’t miss our regular instalment from Dan White on page 55 and a whole host of kids products on page 60. As always, if there is anything you would like to see in the magazine, please don’t hesitate to contact us at ros@2apublishing.co.uk.

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Nature IS CALLING BY ROSALIND TULLOCH

Let’s get back to the wonders of the great outdoors with our kids this spring ur children are growing up in a very different era than previous generations, and while I don’t want to sound like an old record and harp on about “the good old days”, it is apparent that kids these days do not spend as much time outdoors as many of us did in our childhoods. There are a few reasons for this though. We can blame technology and screen time as we witness it stealing our children’s souls and turning them into social media monsters who want to grow up to be YouTube stars - not something my guidance teacher would have entertained 25 years ago. However, screens are not our enemy when it comes to our children as they can offer so much in terms of development, education and social activity. iPads and tablets were a lifeline throughout the various lockdowns and continue to offer great opportunities for children, both disabled and non-disabled, to communicate with friends, take on new challenges and learn new things – all from the safety of their own home. These devices are also a haven of information for finding accessible outdoor pursuits – how else would we be able to find a list of all the accessible forest walks or venues with Changing Places facilities on site? We also live in a different culture these days, long gone are the days where kids were encouraged to take off on their bikes in the morning and told only to return in time for dinner. The culture of how we parent these days has changed substantially from the 80s, the world is now far more aware of the dangers that could present themselves when kids are out alone, and we parent accordingly. There is something magical about nature though, especially in spring. The fresh air, the calming song of birds, and the lush blooming of flowers and leaves everywhere you look. It is no surprise that time outdoors can do wonders for your mental and physical wellbeing. Reconnecting your kids with nature is an important task, not only for them but for the family as a whole. Family walks in the spring can be a great way to spend time together away from TVs and iPads, it offers a chance for some good exercise, relaxed conversations and an opportunity to teach them about wildlife, plants and the importance of green spaces. The benefits are endless and there are so many ways that you can enjoy the outdoors as a family, so what are you waiting for? Here are some ideas to get you started.

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WOODLAND WALKS The UK is filled with beautiful forests and woodlands to explore, and you will find many accessible trails that are suitable for wheelchairs and pushchairs throughout the country. Whether you are looking for a gentle meander through a leafy forest or you want to take the kids on a longer stretch to tire them out, you will be sure to find a space that will suit your needs. The Wildlife Trust has a page on its website (wildlifetrusts.org) dedicated to accessible nature reserves, and the Woodland Trust has a comprehensive list of woodlands in your local area to discover. It is worth looking up review sites like Euan’s Guide or even Trip Advisor to see if you can find any personal reviews on accessible forest walks in your area or check out your local authority website for more accessibility information on local country parks.

BUILD A DEN Keeping the kids amused on a walk, especially a long one, can sometimes be challenging, so it’s good to get stuck into a fun activity to break up the journey. Kids love to get creative and building a den in the woods is always a winner. This is something that the whole family can get involved in and spend some time getting creative and having fun. It is a team effort building a great den, first you need to find a good tree to base your den around, then a hunt for sticks, branches and twigs begins. You can spilt the tasks between the family ensuring everyone is doing something that suits their own abilities and at the end you can all sit back and admire your hard work. Remember to only use fallen branches and twigs, never break them off any trees. Once you are finished stacking your branches and sticks in a tepee style fashion to create your den, you can camouflage it with leaves, and then let the kids imagination run wild. The Gruffalo makes a regular appearance on our family walks, and a den is a perfect hideout!

NATURE SPOTTING

Nature is all around us, whether you are in a forest, walking by a lake, strolling through a park, you will be surrounded by birds, animals, flowers and plants. Add a challenge to your walk by creating a list of animals and plants to spot and encourage the kids to explore their environment in search of spring flowers, squirrels, butterflies, birds and more. Kids will love finding something on the list and it can be so satisfying ticking all of these things off on your journey. It offers a great opportunity to learn more about different plant species, animal habitats and even about which berries or mushrooms are edible and which ones are poisonous! The Wildlife Watch website (wildlifewatch.org. uk) has a great list of activity sheets that you can download and print off, from spring flowers and grazing animals to spot, to instruction sheets on how to create seed bombs and bug hotels. There are also colouring sheets and wordsearches on there, all related to nature.

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MAKE THINGS FOR THE GARDEN

Gardens can be little havens of wonder for kids exploring nature. Encourage your kids to get their hands dirty digging for worms, or to sit and count how many different birds or butterflies they can see flying around their garden. Look at ways you can encourage more nature in your garden and get the kids involved in making things like simple bird feeders, insect hotels, hedgehog homes or bird nest boxes. Hanging slices of orange from trees can encourage butterflies to visit, and hanging seed feeders will draw in the birds, or simply creating a bird bath on a table and leaving out seeds for them will attract any peckish feathery friends too. Seed bombs are great fun, simply combine a cup of seeds (pick up mixed packs of wild flower seeds in any garden centre or supermarket) with water and powdered clay (find this in craft shops), roll it around together to mix it up and create a ball, and leave to dry. Once dried, head to the garden and throw your seed bomb at a bare patch and wait to see what explosion of colour will grow over the coming weeks! This will look great and attract bees and butterflies to play in your garden.

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machines and tumble dryers due to accidents, extra refrigerators needed to keep medicines at a constant temperature. The list is endless and the shock on the face of the verbal recipient is astounding. I then tell them my own story of my daughter’s bipap oxygen machine keeping her alive during the night, the hoist she relies on for personal care always plugged in, the heating always on as her legs can swell and go purple if not kept warm, I feel like I’m speaking truths these people should already be aware of.

DAN WHITE COLUMNIST

Follow Dan on Twitter @Danwhite1972 Dan White, creator of the amazing Department of Ability superheroes and dad to Emily, who is 15 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.

FUEL POVERTY s we all know wholesale gas prices have skyrocketed beyond imagination recently. The resulting horrific spike of household energy and the resulting eye-watering bloated bills will be felt the hardest in the community we live in; the disabled community, who every day descend further into a pit of debt so deep, there is never any real possibility of us ever getting out of it. Recently I have taken up the position of policy and campaigns officer at Disability Rights UK. I have been tasked in one of my duties with looking at the fallout of this nightmare fuel scenario for families under our wing. As I have been searching and conversing with my fellow parent carers and disabled individuals all over the UK, the most striking factor about the vital importance of energy to us is that not one single person within government or the utility sector understands our life-saving reliance on it, and seems determined not to do so. A BBC report from 2008 showed how up to 3 million disabled people were potentially trapped in fuel poverty. Again, as far back as 2012 disabled people were identified by the government’s own fuel poverty

strategy as being one of the groups most vulnerable to fuel poverty; however, there was little evidence about why this was, or whether existing policy measures were providing sufficient support. The big utility companies themselves know how trapped in fuel poverty we are, but offer us only tepid support measures, such as moving meter boxes, braille letters, and debt repayment plans when they could and should be doing so much more. It’s time for shareholder greed to give way to compassion and understanding, only then will things change. I’ll explain. Throughout all of my work on energy bills, it shocks me when a prominent and influential figure on a zoom call listens, mouth agape when I list the amount of life-affirming equipment and white goods always running and charging in a household of a parent carer of a disabled child or disabled person living independently. Electric wheelchair charging, a need to maintain a constant body temperature through heating, machines designed to supply essential oxygen day and night, sensory mats to alert parents of childhood seizures, electric hoist charging, constant use of washing

In order to sort out this greedy and terrifying situation the realities of our needed use of energy must form the basis of a complete and utter revolution of the weak support structures already offered to us. For instance, the threat of disconnection must be consigned to the bin, a free boiler repair or replacement service must be implemented, disability staff training from energy companies must be mandatory, a separate hotline for carers should be installed, the most vulnerable (carers and disabled people) must be ring-fenced from further energy price rises. This is not a wish list, this forms the basis of my government white paper and I will fight to see it through. We are the always forgotten, the most poverty-ridden, and the ones juggling life, love, and care 24 hours a day. You may think I am trying to push water uphill with this, that I am on a hiding for nothing, but poverty rules our daily lives (as our benefits are squeezed or stagnate) and I can’t allow another burden of stress to land at our collective feet. Parents of brilliant and beautiful kids or disabled individuals trying to remain independent in an increasingly toxic world, don’t deserve further financial punishment for simply trying to exist. Our lives are different from everybody else’s, we don’t burn energy for the sake of it, it’s a real and utter essential tool for the sustainment of good health and progress, it can be the difference between life and death, and if the system fails us again, as it did during the pandemic, it will undoubtedly be the difference between heating and eating, I go into political and corporate battle for humanities sake, for common sense and basic humanity. posabilitymagazine.co.uk

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this initiative – so why can’t these be turned down all the time? When asking this question, we are often told that it is to do with sales and the psychology behind shopping. However, the Purple Pound – the spending power of disabled people – is estimated to be worth £274 billion per year in the UK, so it must be argued that they would benefit more from full-time support for autistic and disabled shoppers.

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.

IN THE QUIET HOURS Charli Clement is an autistic, dyspraxic, ADHD and chronically ill activist. She has bylines in VICE, The Metro and The Unwritten, and works within the NHS and charities on improving the experience of autistic people within the mental health system. She primarily writes and speaks about her disabilities, as well as mental health, asexuality, and social media.

There is also so much more that businesses can and should be doing beyond this. In many industries it is often believed that if you don’t directly work with autistic people, you wouldn’t need training or understanding of autism.

Everyone would benefit from an understanding of our sensory needs, how our communication may be different, and how to support those of us with auditory processing issues. Autistic people navigate every part of the world and being autistic isn’t something we can shelve when we enter a shop, go to the cinema, or see a doctor. Whether you find autism hours helpful or not – they should be seen as a singular step on the way to full support of autistic peoples’ needs, instead of being the end of what society needs to do.

n recent years, we’ve seen a slow rise in “autism hours”, alternatively known as “quiet hours”, across shops and supermarkets. During these times, music is quieter, and lights are lowered to help autistic people or those with sensory needs. In certain shops, this may also include staff not approaching customers. An extremely common issue with this lies in their timing, as most often these hours are set in the first hour of opening, generally on a weekday. This provides an implication that autistic and disabled people would not be in education or employment and stops those who are from accessing this accommodation. Many autistic people also struggle to sleep, or experience co-morbid conditions causing chronic fatigue, meaning they would not be able to get to a shop in its first hour. Autistic and disabled people deserve to be able to shop for more than one hour a week without sensory overload, or to have a lie in like their non-disabled peers before they go shopping. This single hour feels like a performative idea to seem like the shop is being inclusive. Ultimately, it is confusing that shops clearly have the knowledge of the difficulty that bright lights and loud music can cause to disabled shoppers through putting on

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Becoming AN

AUTHOR BY MELISSA CASSIDY

Melissa Cassidy is 16 years old and lives with cerebral palsy. She has recently written her first children’s book and she tells PosAbility why she wanted to become an author eing disabled has meant two things for me; that I am underestimated and that I am underrepresented. People always assume that I am some kind of little dolly that sits in her wheelchair and smiles, this assumption has followed me throughout my whole life and as I’ve grown older, I have grown more exhausted by this. It took a global lockdown to make me realise that if I wanted to change people’s perceptions, I had to have a strategy. I also realised that if I was going to do something, I may as well try and represent as many minorities as I could. There was no easy way to universally broadcast my message so eventually I decided I had to pick my demographic and craft something easily understandable yet enjoyable. I decided I should write a children’s book. I spent the first few months of 2021 applying for grants, writing and rewriting, the next working with an illustrator and by Christmas, I had set up my own publishing house, Alder Books and managed to get the first ten printed copies of my book. My book, Doodle the Poodle’s Big Day Out is a picture book which is all about dogs. The protagonist, Doodle the Poodle, goes out on a walk with his two dads and meets many other different types of dogs with different types of owners such as single parents, service dog owners and disabled owners. I think children seeing all these different types of people really opens their eyes to the world and the different families and people out there. Writing a book has really changed things in my life. I have gained a lot of confidence in myself and my writing but I have also gained a lot of respect from people in my life. It’s almost like when I released the book, I released something that could physically show people my abilities. It showed that I was more than people’s assumptions. It has also taught me how to take pride in my work. I have been blogging for over a year but because I have written an actual book, I feel more like a “proper writer”. It’s given me a lot of hope for my future that I’ll be able to have a career because I know how difficult it is for disabled people to get employment and it’s always been a fear of mine that I would end up unemployed. I am someone who plans on living a very full life and having a successful career and unfortunately, that’s not something that’s really seen for

disabled people. By becoming an author I hope that I can change that, and I hope I can be a role model for younger disabled people who aren’t seeing themselves in careers like writing. In setting up Alder Books, I plan on helping more diverse voices like my own be heard through working with other aspiring authors to get their stories out there. I’m not where I thought I’d be at 16 years old and I feel incredibly lucky to have the opportunities that I’ve had. Writing this book has made me reflect on my life. I now realise that most of the time when I imagined my future, it wasn’t disability holding me back from imagining big things, it was me underestimating myself and not seeing people like me represented in the ways I wanted to be represented. You can purchase Doodle the Poodle’s Big Day Out on etsy.com. You can follow Melissa on: Blog: buttonsandramps.wordpress.com Twitter: @ramps_and

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SHAKE UP it

BY SALLY CALLOW

Sally Callow, founder of ME Foggy Dog and ME campaigner, has launched a petition to have a central system instated that allows ME/ CFS patients to report any harmful effects that they experience from being prescribed nonpharmaceutical treatments, like GET and CBT. Sally explains why the central collection of this data is so vital for the ME/CFS community uantitative data on harms from nonpharmaceutical treatments is urgently needed to inform policy and research funding decisions for ME/CFS, long COVID, and many other illnesses. The Shake It Up campaign was brought about by issues raised during the National Institute of Health and Care Excellence’s ME/CFS guideline review that was published in 2021. During the review, which took over three years to be completed and published, it was claimed by proponents of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) that there were no reports of harm from nonpharmaceutical treatments – of which both GET and CBT are. This was news to the ME/CFS patient community in the UK who had been complaining to their GP practice, NHS Trust, ‘CFS clinic’, PALS, and Healthwatch about harms from these treatments for over a decade. This meant that thousands of complaints had been dealt with internally and not collated or counted centrally. The NHS has been marking their own homework and found themselves to be doing a good job. The fact that there was no quantitative data to be used as evidence was also commented on during the review process. This is because patients have nowhere central to report harms to, the Medicines and Healthcare Products Regulatory Agency’s (MHRA) “yellow card system” is purely intended for licensed products, such as pharmaceuticals and devices.

The NHS has been marking their own homework and found themselves to be doing a good job

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...***** became completely bedbound, barely able to eat and talk, incapable of reading, listening to music, watching television or indeed tolerate any sound at all During the last few weeks of the guideline review, a member of the committee asked for patients to submit personal anecdotes/statements so they could see the harms for themselves. This was one of those statements submitted by a caregiver on behalf of a very sick ME patient. Their name has been omitted for anonymity. I herewith, on behalf of *****, confirm that ***** went from having mild/moderate ME being able to potter about at home, do some light reading and conducting short conversation, to having very severe ME due to following graded exercise therapy (GET) as recommended by Consultant Rheumatologist. Following the recommended GET, ***** became completely bedbound, barely able to eat and talk, incapable of reading, listening to music, watching television or indeed tolerate any sound at all. *****’s quality of life is non-existent, to call his existence a ‘living death’ is an understatement in that this description does not even start to cover the intense physical and psychological suffering. ***** is coming up for ten years spent unable to do anything but staring up at the ceiling and is in desperate need of help. This statement highlights why an independent reporting system is urgently needed. The NHS cannot continue to mark their own homework.

Extract from the NICE guideline (29 October 2021): Incorporating physical activity and exercise 1.11.9 Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms. 1.11.14 Do not offer people with ME/CFS: • any therapy based on physical activity or exercise as a cure for ME/CFS NICE has now stated that this is purely for guidance and medical professionals can use their own clinical judgement but must be prepared to justify their decisions in front of the General Medical Council if challenged. By saying this, I believe they are aware that more patients will be harmed by non-pharmaceutical ‘treatments’ despite the new guideline. I have personally seen online posts from medical professionals stating that they will continue to recommend exercise to ME/CFS patients as otherwise they have no treatments to offer them. Patients would prefer no treatments to being prescribed non-pharmaceutical treatments that may harm them.

ME Foggy Dog’s Shake It Up campaign includes a petition titled “We Demand A New System to Report Harms from Non-Pharmaceutical Treatments”. It currently stands at 7828 signatures; we are petitioning Secretary of State for Health and Social Care, Sajid Javid MP and NHS CEO Amanda Pritchard. I am asking supporters to also email their MP and Lord Kamall (Parliamentary Under Secretary of State for Technology, Innovation and Life Sciences at the Department of Health and Social Care) about the need for a reporting system for non-pharmaceutical treatments.

The petition has now been running for over three months and I have received comments from members of other patient groups and they have explained how this system will benefit them too. I’m pleased to know this system will benefit many patient groups in the UK. Please support the Shake It Up campaign and sign the petition at mefoggydog.org/shake-it-up.

Thus far, Lord Kamall, Ms. Pritchard, and the Department of Health and Social Care (DHSC) have replied to our correspondence and are continuing to direct patients towards the established complaint process - NHS, CCGs, and PALS. One has to wonder why there is a reluctance to create a system by which very sick patients can report harms from non-pharmaceutical treatments when the benefits to patients, the NHS, and government are numerous. Is it too cynical to suggest economic factors could be the main concern? Non-pharmaceutical often equals cheap treatments. Given that it is estimated that 46% of long COVID patients meet the diagnostic criteria for ME/CFS, a patient community of around one million people is going to become a very expensive problem for DHSC and the NHS. NICE have spent over three years reviewing scientific data and have reached the conclusion that exercise-based therapies should never be recommended to ME/CFS patients as treatments or curative.

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Dream JOB GET THAT

BY TAMMY HARMAN

LOOKING FOR OPPORTUNITIES Maybe you’ve been in your job for a while and you’re not enjoying it anymore. Or you’re trying to get back into work. You find yourself falling into the same old job search routine, but you’re still not finding the right vacancies. What can you do?

BE OPEN TO CHANGE Are you applying for jobs in the same sector? You don’t have to. Some of your skills will be highly specialised, but the majority won’t. If you used to be an executive assistant in finance, you might be a good administrator in higher education. A teacher in primary school? You could be a good project officer in healthcare. Focus on the skills you’d like to use and are good at, and not just where you learned them. Find out where else those skills exist. The National Careers Service (nationalcareers. service.gov.uk/skills-assessment) has a useful tool that will help.

TAKE ADVANTAGE OF CHANCE Not all career management is about planning or goal setting. Go off-target and speculate a little. A chance meeting at lunch might start a conversation about vacancies in another department. Eavesdrop in a bus queue and you might start delving into a sector you didn’t know existed. You don’t have to stick to your original plan if a viable opportunity comes along.

see something you like, but you’re not a good match, what can you do to become a better match? What new skills will you need, or what new experience will you have to gain? How can you get them? It won’t help with that vacancy, but it might be the first step on a new journey.

05 FF EE EA LR J U S T E N O U G H

Fear can be a good catalyst for change. There’s a sweet spot between your comfort zone and your danger zone, and you can only find it by putting pressure on the boundary line between them and moving it out slowly. Keep doing that, and when you look back you’ll be amazed how far you’ve come. To find jobs from inclusive employers who are looking to attract more disabled candidates, have a look on the Evenbreak website: evenbreak.co.uk. To find relevant and accessible careers support for disabled candidates have a look on Evenbreak’s Career Hive hive.evenbreak.co.uk.

03 C H A N G E Y O U R P R O C E S S Job searching can be a trudge, but there are things you can do to make it feel less so. Look for vacancies on new jobs boards, attend a virtual careers fair, talk to a coach about how to reaffirm your priorities. If you usually job search in the bedroom, try a coffee shop, or if you usually job search alone in the front room, ask a friend to help you sift vacancies.

04 G E T E X C I T E D !

You’re going on an adventure! Whatever job you get, you’ll meet new people, do new work, learn new skills. Explore what’s out there. Look at some of the 20,000 vacancies on Evenbreak (evenbreak.co.uk), or the 800 job types on the National Careers Service website (nationalcareers.service.gov.uk/ explore-careers). Let yourself dream. If you

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