PosAbility – Dec / Jan 2022

CHRISTMAS

Taking time to look after you this Christmas

DISABLED CREATORS

Supporting talented disabled artists, makers and creatives

DECODEME

The long-awaited research into ME/CFS has begun

EDITOR

It’s that time of year again. The trees are up, the advent calendars are open, if you are a parent you may be dealing with this pesky elf that has invaded our houses over the last few years to cause chaos - and more work and tidying up for parents, just what we need at this time of year!

The cost of living crisis has settled a thick fog over Christmas this year, and it is becoming hard to see through it. We are living in very difficult times, and the disabled community is taking the brunt of the impact, but our community is strong and resilient and

this year more than ever we must rally together, check in on each other and ask for help when we need it.

This issue we have focused on making the most of Christmas this year by sharing the load with family and friends, ensuring you are conserving time, energy and money. Check out our ideas for the most relaxing Boxing Day on page 14, and turn to page 50 to get some indoor activity ideas for the kids.

If you are buying presents this year, please turn to page 28 where we are showcasing some amazing disabled creators. This talented bunch have a huge variety of products on offer that will make great gifts for someone special in your life.

You will also find all the regular instalments from our columnists, as well as our annual Year in Review article on page 58 where we look back on what happened in 2022 –and essentially say good riddance to it.

We would like to wish you all a very merry Christmas and a happy New Year. Look after each other, we will see you in 2023.

KIDS’ CORNER

Christmas fun for little ones, Dan White fighting the good fight, and living life unafraid with mobility aids in our Future Voices column

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FOR YOUR INFORMATION

News and stories from around the world

DMUK BAYWATCH RESULTS

In August DMUK asked the public to help them with their annual Baywatch campaign. Disabled motorists were asked to complete a survey about their parking experiences over the past 12 months and there was a record number of responses, with 1028 people responding to the survey. This year’s survey again confirmed that most disabled motorists, 78.12% of respondents, think that local authorities are not doing enough to tackle disabled parking abuse. This figure is significantly lower than last year (95.9%) which does suggest that some local authorities are doing more to tackle this issue.

When it comes to finding suitable disabled parking bays at supermarkets, 39.2% of those surveyed said that it was ‘easy’ and 11.6% said it was ‘very easy’. However, 81.9% of respondents also stated that they ‘very often’ or ‘often’ see disabled parking bays being abused. This would suggest that there is still more work to be done in the correct management and enforcement of those bays.

Similarly, to last year, the DMUK survey

also asked people to provide details of the parking experiences on everyday journeys. 56% of the respondents stated that it was either difficult or very difficult to find suitable disabled parking. In 2021 this figure was 79.5%. However, in this section of the survey, they also asked the respondents how often they saw disabled bays being abused on their everyday journeys. 87% of respondents said that they either saw this occurring ‘often’ or ‘very often’. This figure, consistent with last year, is alarming and shows that the wider parking industry is not doing enough to enforce disabled parking provisions.

DMUK communications and campaigns director, Heidi Turner said: “We are thrilled to have received so much support for this year’s campaign. Getting over 1000 responses is a first for the charity and it also shows how important parking is to disabled people. We are pleased to see some improvements for disabled people when parking on their everyday journeys, but supermarkets continue to disappoint. The charity will continue to seek ways of better enforcing and managing the Blue Badge scheme so it is protected for genuine Blue Badge holders.”

To read the full article of results visit: PosAbilityMagazine.co.uk/DMUKBaywatch-Results-2022.

BBC COMMITS TO IMPROVING ACCESS

The BBC has recently announced a new set of commitments to improve the representation of disabled people on screen and to improve access to BBC productions for disabled people. BBC iPlayer is also launching a dedicated collection called ‘Count Us In’ that celebrates disabled programming and talent.

The BBC’s commitments state:

“The BBC is committed to improving the representation of D/deaf, disabled and neurodivergent people on screen, with a focus on the quality and quantity of representation. We believe the portrayal of disabled people must be authentic, inclusive and reach across all our programmes and recognise that disability can be apparent or nonapparent

“We know there are barriers to access within the broadcasting industry for those working off screen. We commit to improving opportunities and accessibility across our productions so that no one is ever excluded.”

The BBC has promised to include disabled talent in all new commissions, this means for all scripted programmes they will endeavour to cast actors with lived experience of disability in disabled roles, as well as “seeking disabled actors for roles not specifically written to be disabled”.

An increase in representation of disabled people within unscripted shows has also been promised, as they seek to include disabled people in contributor, presenter, and performer roles, both in series and one-off shows.

Joanna Abeyie, head of creative diversity at the BBC, said: “The BBC is committed to building an accessible and welcoming culture for disabled talent, both on and off screen, as part of our plans to ensure we truly reflect disabled audiences. There is more to do across the whole industry and I’m excited to see how these new access commitments remove barriers and create better workplaces that make the TV industry more accessible to all who want to be a part of it.”

NEW MOTORSPORT PROJECT FOR DISABLED ROOKIES

Team BRIT, the UK’s all-disabled racing team, has announced a new racing project for disabled rookies. From 2023, the team will field two entries in the Citroen C1 racing series, beginning at Silverstone in March.

The low-cost endurance racing series sees drivers compete in standard, first-generation Citroen C1s. The tightly controlled series allows no modifications to the engine or transmission – the goal being close racing for everyone on a budget.

The Team BRIT entry will consist of two teams of four drivers, one representing LGBTQ+ drivers, and a team of all-disabled drivers who require the use of hand controls.

The team already confirmed will be made up of Anji Silva-Vadgama, a Team BRIT rookie who lives with MS, she will be joined by her wife Asha Silva who lives with ADHD and autism. Also on the team will be Yvonne Houffelaar, an experienced sim racer who has scoliosis, and her partner Sophie Aeronwen who is autistic.

The cars will be fitted with the team’s worldleading hand controls to enable disabled drivers to compete on equal terms. Drivers signing up to the project will receive professional coaching, tuition, testing and support throughout the season, entering all eight races.

Team BRIT founder Dave Player said: “We’re really excited about the launch of this project, which will add another step on our ladder of motorsport development for disabled drivers. “Adding the C1 championship to our race calendar means that drivers who are just starting out in the sport can enter a professional and hugely popular championship at entry level, with the support and guidance they need to develop.

attract some exciting new drivers to the team and look forward to seeing Anji and Yvonne enjoy some fun and competitive racing next year.”

The team is looking for new disabled drivers to join the project, who will benefit from the use of the team’s hand control technology. To be eligible entrants must have a disability that requires them to race with hand controls. Email Info@TeamBRIT.co.uk if you are interested in being considered for the team.

SEE SPORT DIFFERENTLY

British Blind Sport (BBS) and the Royal National Institute of Blind People (RNIB) released two new See Sport Differently toolkits to support sight loss organisations and sports clubs in helping blind and partially sighted people to be active.

The toolkits are designed to support clubs and organisations by offering resources, information and ideas of how to work with other organisations to help strengthen local work that is already taking place. Created in collaboration with National Governing Bodies of Sport, the toolkits cover topics including accessible marketing, adaptable equipment, upskilling staff and volunteers, and more.

See Sport Differently aims to challenge perceptions and demonstrate that blind and partially sighted people can get involved with sport and physical activity.

Charlotte Lloyd, National Governing Body liaison officer at BBS, said: “Our See Sport Differently research revealed that there is excellent work happening in both the sports sector and the sight loss sector to support blind and partially sighted people, but that the two sectors generally work in isolation, resulting in low levels of involvement. We hope that this resource will enable more organisations and clubs across the country to work together to deliver sport and increase participation for blind and partially sighted people.”

“We hope to

THE AUTISM FRIENDLY COOKBOOK

Autistic journalist Lydia Wilkins has launched her debut cookbook, written specifically for autistic people.

The Autism Friendly Cookbook contains 100 recipes, with 30 of those coming from other autistic individuals. They are categorised with a key for sensory needs, as well as dietary requirements; most have some kind of story attached, too. You will find a skills ‘band’ – so if you struggle with timing, then you have more agency in tailoring your food to you. There is also an energy rank, too. Other chapters deal with sensory issues and how to adapt, as well as advice for parents, teachers, guardians, or relatives.

Lydia explained her ethos behind the book to PosAbility: “It was important to me to put autistic and disabled

voices front and centre; there are a tiny number of non-disabled people who have made this book happen, probably less than ten.

“Not all autistic individuals will struggle [with cooking] – but I’d argue that those who don’t are extraordinarily lucky, and probably the product of a degree of privilege, such as if someone in a supporting role has had the time to teach and adapt to your specific needs. Research is suggesting more and more that eating disorders may potentially have an overlap in autistic women, for example. Those who use a food bank are more likely to be disabled, too. A conversation about this needs to start, desperately, especially given we now grapple at the coalface with the cost of living crisis.”

You can buy The Autism Friendly Cookbook on Amazon.co.uk

LATEST TWEETS

Dan White @Danwhite1972

Over half of parents & carers report skipping or cutting the size of their meals because there wasn’t enough money for food, while more than one in ten carers say they’ve had to cut back on essential items for their disabled children

Britain is debased & its government uncaring Eugene*Grant @MrEugeneGrant

“For those whose body types are never shown in certain contexts, it can be incredibly powerful to see someone like us participating” - sing @cathyreaywrites

Princess, The Tower @APainPrincess

“Flares don’t just affect us physically—there’s a tremendous emotional effect… Sometimes all we can do is just survive in the present moment… From one [#spoonie] having a bad week to another, we got this… Even when it feels like we don’t.” #NERVEmber

Accessercise @accessercise

ANNOUNCEMENT!! We are super excited to be launching our university pilot program this week! Accessercise have launched this historic pilot program to work with a number of universities to help their offering of exercise and fitness to their disabled students and staff.

SENSE AWARDED £2.2MILLION TRUE COLOURS CONCERT

The national disability charity, Sense, has been awarded £2.2 million by Sport England to tackle the issue of ‘inactivity’ amongst people with complex disabilities.

This new funding will allow thousands of people living with complex disabilities in England the opportunity to participate in sport and physical activity, improving their physical and emotional wellbeing.

According to Sport England research, over half of disabled people are inactive – compared to a third of non-disabled people. This inequality increases sharply as the number of impairments a person has increases.

The funding will allow Sense to directly support an additional 5,000 people living with complex disabilities to become more active in their local communities. The funding will also put a focus on upskilling care staff and sport providers to ensure they can deliver accessible and inclusive physical activity sessions.

Louis Wickett-Padgham, head of sport and physical activity from Sense, said: “Being active is vital for maintaining a healthy lifestyle, learning skills and making friends, and yet disabled people are almost twice as likely to be physically inactive as non-disabled people.

“The funding from Sport England will help us to support over 5,000 people to lead a more active life and further strengthen Sense’s strategic position to influence and lead positive change across sectors for people with complex disabilities.”

Sport England also announced funding for two other disability charities, Mencap and Special Olympics GB.

The charities join over 120 organisations that Sport England has partnered with this year, chosen for their unique influence and ability to level up access to sport and physical activity across England and create systemwide change.

Aglobal concert celebrating diversity and inclusivity in the performing arts has taken place in Tokyo, Japan. Embracing the theme ‘One World, One Family’, over 90 artists from a wide range of different cultures and many of whom live with a disability, performed alongside headliner Katy Perry.

True Colours Festival (TFC) is a long-running international festival of performing arts that celebrates diversity and inclusion. It is designed to spark conversation, encourage innovation and creativity, and change perspectives.

The concert, presented by The Nippon Foundation, was the most accessible concert ever staged by TCF. It boasted an array of accessibility features, including Japanese Sign Language, International Sign, real-time subtitles, audio description and personnel on standby at the venue for all guests in need of assistance. It was noted that the JSL and IS signers were a highlight of the show with their “high-energy and emotive signing of not just words, but also dance and instrumentals”.

The concert included performances from disabled singers, dancers, performers, choirs, from across the world each with a different style. The talented line-up joined Katy Perry for the finale to an exhilarated and excited crowd for the biggest applause of the night.

Dr Sydney Tan, creative and music director of the concert: “I wanted this concert to open minds and hearts, so it was not just about showcasing the enormous musical talents of the performers, but sharing their unique stories, which was not easy when most of our meetings had to happen online,” said Sydney. “I have never seen such amazing collaboration and camaraderie between artists across borders and time zones. The only limitations I faced were my own perceptions of what was possible, as every single artist involved surpassed every expectation I had.”

Christmas Day

BY ROSALIND TULLOCH

Making Christmas Day work for you this year

Whether you live for Christmas or you simply tolerate the chaos of the festive period, there is no escaping the festive season, and it can have a nasty habit of becoming the most stressful time of year for many of us. Between juggling family commitments, shopping for the perfect array of presents, and worrying over the perfect cooking of a turkey, it can certainly take its toll on our stress levels, energy levels, and general wellbeing.

We want to help make Christmas a little easier this year, so we have come up with some Christmas hacks to hopefully make your life a little easier, keep your wallet a little fuller, keep your energy levels a little more stable and bring a little festive cheer to your Christmas this year.

SAVE YOUR ENERGY

Cooking everything from scratch for Christmas, from the main event and canapes, to mince pies and desserts is an unrealistic and unnecessary goal. Some of us love cooking and revel in homemade baking, but the

reality is that it takes up a lot of time and energy. The supermarkets have upped their game over the last few years and you will find an amazing array of readymade goodies that will surprise your taste buds and keep to your Christmas budget. Aldi and Lidl are firm favourites for their affordable delicacies and keep your eyes peeled for special offers in all the supermarkets this year – you can’t pass up a chocolate orange at 75p

Christmas is the most expensive time of year. The pressure to buy presents for family, friends, kids, work colleagues and even pets, can be overwhelming, especially this year. A great way to avoid this huge expense is to introduce the idea of doing a Secret Santa gift exchange. Get your family or friends on board, set a budget that you are all happy with and then pull a name out of a hat, and remember to keep it secret. This way everyone gets a present and there is limited shopping stress.

SHARE THE COOKING

If you are hosting Christmas at your house this year, don’t take on the expense and work of preparing Christmas dinner all yourself. Set out a plan and ask all of your guests to bring along a dish or item to contribute to the day. Everyone chipping in to help makes the day much more enjoyable and far less expensive for you, so make a list and have someone bring dessert, another could bring a cheese board, and someone else could bring the wine. On the day, make sure you get anyone who is able to help peel the carrots and potatoes, or enlist their help in setting the table, and ensure everyone does their fair share of washing up, that is not a job for one.

SAY NO

This time of year is filled with catchups, drinks parties, lunches, office parties and various other festive outings. It can be exhausting trying to show commitment to everything you are invited to, and the best gift you can give yourself this year is the gift of saying no. Don’t feel pressured

THE PERFECT

BY ROSALIND TULLOCH

If only every day could be like this…

As much as I love all the fuss and excitement of Christmas Day, I can’t wait for Boxing Day to arrive. It is a day reserved solely for relaxing and over-indulging, for watching movies, tackling 1000-piece jigsaw puzzles and eating leftovers. Some of you may be experts in Boxing Day chilling already, but if not, we bring you some inspiration to help you make the most out of what is, arguably, the best day of the year.

WAKE UP

Literally wake up whenever you like. Do not set an alarm, and do not feel bad about enjoying your welldeserved lie in. You may have to get up with kids or pets, but under no circumstances do you need to get dressed, that is very much a problem for later in the day or tomorrow. Get the kettle on and why not grab a couple of chocolates for breakfast? It is perfectly acceptable to eat chocolate for breakfast on Boxing

VENTURING OUTSIDE?

Sometimes, a walk on Boxing Day can do you the world of good, if it is a fresh crisp day it can blow away the cobwebs and prepare you for tackling those leftovers. If you have dogs that need exercise this will hopefully tire them out for an afternoon of sofa time too. On your return from your walk, you can simply slide back into your pyjamas or don that Christmas onesie you were gifted!

MOVIE MARATHON

Boxing Day is generally a great day for movies on television. You will usually find family-friendly films or sitcoms on most channels, or if there is nothing you fancy simply turn to the never-ending libraries of Netflix, Prime, Disney+, or any other streaming service you subscribe to. You may be open to a movie marathon of all the Harry Potter movies, however this would take you 19hrs 39mins without breaks, so we think you would need another day to achieve this. Alternatively, you could opt for the Godfather movies, the Lord of the Rings trilogy or all nine Fast and Furious films (again, you will need more time). If there is ever a day to binge watch a Netflix series, this is it, so start making a list of all the shows you want to watch and get settled in to make a dent in that list.

to be a jigsaw day and everyone has to help. We usually get a 500-piece jigsaw started in the morning in the kitchen and over the day everyone takes a shot at filling some of it in. Any time someone walks past they stop and try to put a piece in, it also keeps the kids entertained, and if you have a gin and tonic in hand you will feel all the better for it. If you have younger kids why not set up a jigsaw for them too and see who can finish first!

LEFTOVERS

It’s time to eat again. There is nothing better than using up leftovers by making turkey sandwiches packed with pigs in blankets and cranberry sauce, there may even be a parsnip or Brussel sprout thrown in there for good measure. If you are looking to use up every last vegetable and side dish in your fridge, you can’t go wrong with making a huge pie to feed everyone. This pie will vary every year, depending on what we have left over, but it is always follows the same principal:

1 Chop up left over carrots, parsnips and Brussel sprouts and sauté them in a little oil in a large frying pan.

2 Chop up the turkey meat and add this to the pan, then add a good splash of double cream –you want it really saucy. Add some seasoning and allow that to warm through.

3 Transfer into an oven proof dish and then layer any other leftovers on top. Slice pigs in blankets in half and make a layer of them, slice or crumble stuffing over to make another layer, add a layer of red cabbage or roast potatoes and even add a splash of gravy to them.

4 Then add a ready rolled sheet of puff pastry on top, score it with a sharp knife, brush it with egg and pop it in the oven for 20 minutes or until the pastry is golden brown and looking delicious.

A LITTLE TIPPLE

The perfect end to a relaxing day may involve a Baileys on ice, a tub of Celebrations and falling asleep in front of the TV. Or it may involve building your child’s new Lego instalment from Santa, or even a family board game that gets everyone involved. Whatever it is, just make sure you are enjoying yourself, this day only comes around once a year and you deserve it. That Baileys won’t last until next year so best not waste it.

Employing your own care and support

Employing your own personal assistant(s) can help you live independently, in a way that you choose. Our online toolkit will help you to recruit a personal assistant and explains what to do when they’re working for you.

‘Employing personal assistants’ toolkit

This toolkit guides you through the process of recruiting, managing and training a personal assistant. It’s available online via the Skills for Care website.

Individual employer funding

You can apply for funding to pay for training to develop you as an employer and to develop the skills of your personal assistant(s). It can also cover the cost of travel and hiring replacement support.

SAM RENKE

MONEY TALK

ou have probably already guessed that I’m going to be talking about money. I appreciate it’s a risky and sensitive topic to be writing about so close to the festive season and I apologise if this may be triggering for some of you - I won’t be offended if you decide to skip this page.

The cost of living crisis is affecting everyone differently, but for the disabled community the stakes are even higher with research finding that 68% of disabled people think they have been, or will be, more severely impacted by the cost of living crisis than those without disabilities.

I wanted to share my recent thoughts and feelings on finance. In particular, how I am personally trying to safeguard my income and manage my outgoings given our current economic situation. FYI, I am not Martin Lewis!

I know the government have set up extra funds since they announced their support package in May 2022, but if you aren’t sure what you are entitled to make sure you visit Gov.uk/checkbenefits-financial-support - I absolutely

live by the motto if you don’t ask you don’t get! If you are entitled to it, then hold no shame about it.

I’ve always proclaimed to have quite a healthy relationship with money. Aside from my university loans, I’ve never really been in debt, which ironically means my credit rating is most likely not the best. I’ve always paid off credit cards in time and I always hunt for a bargain, I’m certainly not one to be ashamed of the yellow sticker. I have fond memories of being a child and already by age seven having my own antique stall with my sister, we’d hunt for things to sell on the weekend at local car boot sales and triple the profit at the next antiques fair. Just call me Del Boy!

However, I have recently started to be a bit more honest about my spending habits. I’ve absolutely noticed a rather unhealthy trend which sees me buying clothes, home interior bits and bobs, or make up, when I’m feeling low, anxious or isolated.

I watched a series on Netflix called Get Smart With Money, and although I’m not raving about the show as a whole, one of the money experts said something that has stuck with me, and now every time I go to spend my money I stop and have a mindful moment to take their advice. They told viewers to categorise purchases into four boxes: I love, I need, I like, and I want.

I love – those goals you are saving up for, a house, holiday.

I need – paying rent, food, electricity.

I like – clothes, handbags, video games

I want – extra chips with your meal, a take-away at the end of the week and that Starbucks pumpkin spice latte - those instant gratifications. This may sound like simple common sense, but I notice that I tend to buy a lot of things that I like or want to fill a void. I have an addictive personality and now that I I’m not a wild party girl anymore - I’m not a social smoker and barely touch alcohol unless it’s free at an event - I’ve turned to spending money as a way to pacify my anxiety, loneliness, and feelings and of not being good enough.

Of course, this is a drop in the ocean when we look at the rising living costs, but even if you cannot relate to my impulsive shopping habits, we can all agree that each and every one of us are creatures of habit. Sometimes those habits can have a hugely negative impact on our spending and savings.

I urge you all to leave your egos at the door and sit with your pen and paper and be honest about your finances. Now is not the time to bury our heads in the sand, we need to be strong and pragmatic. We also need to be sharing our tips and tricks on how to spend less and save more.

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

“...we can all agree that each and every one of us are creatures of habit.”

DecodeME

BY PIPPA STACEY

Research for people with ME/CFS, by people with ME/CFS

Living with ME/CFS is no walk in the park. Though I’m happy and comfortable in my disabled identity and proud of how I’ve adapted to life with chronic illness, there isn’t much I wouldn’t do to rid myself of this particular condition once and for all.

ME/CFS is a complex, multi-system illness that can really take a toll on a person’s quality of life. People with the condition not only have to manage the debilitating symptoms they live with every day, but also endure stigma, ableism, and gaslighting - even from many medical professionals. I’ve lived with ME/CFS for around

12 years now, and the lack of research interest in the condition has often felt like one of the most difficult things to bear. It had been a long old time since I last felt a real glimmer of hope, but then came along DecodeME.

DecodeME is the world’s biggest study into ME/ CFS. Tens of thousands of individuals will be asked to complete a questionnaire about their lived experiences, and a subsection will go on to provide a saliva sample for lab analysis using a bespoke ‘spit kit’. The research aims to pinpoint genetic causes of the condition, so that we can better understand it and work towards developing targeted treatments. Essentially, it’s the study

that people with ME/CFS have been crying out forsome of them for decades.

Conducting research on participants who are often incredibly unwell comes with all kinds of challenges. That’s where Patient and Public Involvement (PPI) comes in. The study has formed an active partnership with people with ME/CFS right from the beginning of the process. Myself and others, who have valuable lived experiences, have contributed in many areas: the study

design, recruitment process, marketing and communications, and plenty more, to ensure the research is as accessible and energy-friendly as possible for people to take part in.

Some of these measures are predictable – the ability to take part from home, a dark mode for the website, having a simple questionnaire process available online or on paper. Others are more nuanced: easy-read (and brain fog-friendly!) instructions for those

People with the condition not only have to manage the debilitating symptoms they live with every day, but also endure stigma, ableism, and gaslighting - even from many medical professionals

completing a spit-kit, a phone line where people with severe ME can have somebody talk them through the questions and record their answers for them, and regular webinars with adjustments so that interested participants can also engage with the science behind the study.

For me, the most enjoyable part has been feeding into the wording used in outgoing communications. I help to tailor content for different audiences, offer alternatives for challenging words and phrases, and ensure the language makes every reader and potential participant feel welcomed and included. Knowing that the core team genuinely values our insight and shapes their work around this feels incredibly empowering – something that’s been picked up on and appreciated by many of the individuals the study reaches too.

Professor Chris Ponting, chief investigator on the DecodeME study, believes the feeling is mutual: “Working alongside people with ME and carers has improved our research by motivating us every day to deliver the project to the most exacting standards. Also, lived experience of ME, woven into our

communications, has without doubt increased participation greatly. And with greater participation comes a greater chance of genetic discoveries. It has been a real privilege to work with such a wonderful PPI team.”

Being part of DecodeME has been my first taste of PPI involvement in research. Now that I’ve experienced it, I can see how much value it holds – especially in projects concerning disabled people. Many studies in the past have been headed by non-disabled teams, who may have the qualifications and skills to facilitate game-changing work, but perhaps lack the lived experience that’s arguably most important of all. I now strongly feel that the ‘nothing about us without us’ mentality should extend much more prominently into the world of research, and I’d love to see this approach becoming more mainstream in the future.

DecodeME represents an important step towards more biomedical research and the answers the ME/CFS community so desperately wants. For me,

however, it’s come to mean much more. This is the first time in a long time I’ve felt real hope – not only because of any potential findings, but because we’re being heard.

For so long, people with ME/CFS have felt left behind. Living with a little-understood condition alongside the challenges of an ableist world can make you feel as though you don’t quite fit anywhere, that your voice doesn’t really matter. I’m lucky enough to not be as severely affected as others, and to have an online platform where I can share the challenges of living the life I choose alongside managing my life-altering symptoms. There are many others who don’t often get a voice – people who have been living from their homes, their rooms, their beds, for years and decades. People of all ages and backgrounds who don’t have enough energy to speak aloud, who can’t even be hugged because it hurts to be touched. This study is also inclusive for them, people with severe and very severe ME, as much as it

is for anybody else. And that alone is a remarkable accomplishment.

It’s still early days for DecodeME. Participant recruitment officially began in September 2022, and we need to recruit 20,000 people to take part. If you have ME/CFS, there’s still time to get involved. To find all the information you need, sign up for the study, and help change history, visit DecodeME.org.uk. You can also find DecodeME on social media, with plenty more ways you can support the research and help spread the word.

On behalf of myself, the DecodeME team, and the hundreds of thousands of people with ME/CFS in the UK alone, thank you for your support. Here’s to the future! Find out more:

I help to tailor content for different audiences, offer alternatives for challenging words and phrases, and ensure the language makes every reader and potential participant feel welcomed and included

CHRISTMAS WITHOUT THE TIPPLE

KATIE CAMPBELL

There’s a societal pressure on many of us to drink at Christmas time, but there’s more to the season than alcoholic beverages!

Many of us with children leave a little whisky out for Santa every year, light a brandysoaked Christmas pudding on fire, and spend the month of December attending boozy work nights out or gatherings with friends and family. There’s a correlation between alcohol and the festive season, but for many people who don’t drink, the whole affair can feel a little bit challenging and overwhelming. Thankfully, the availability of non-alcoholic drinks, cocktails and beverages has improved over the years, offering those of us who don’t feel like drinking (or are set to enjoy a Dry January) a wider selection to choose from, even from the local supermarket!

NO-ALCOHOL PRODUCTS

Many supermarkets now carry nonalcoholic versions of “conventional” drinks and spirits that are very easy to come by, and are barely discernible from their alcoholic siblings. No-alcohol products are ones that contain up to 0.05% ABV (alcohol by volume; for reference, a standard bottle of Budweiser is 4.5% ABV), and low-alcohol drinks contain up to 1.2% ABV. Lots of well-known brands offer alcohol-free versions of their most famous drinks: Gordons offer an alcohol-free gin for the G&T lover in your life, Kopparberg produce alcohol-free versions of several of their most well-loved flavours (get the strawberry and lime one, it tastes like Petit Filous yoghurts), and there are a dizzying selection of wines, beers, sparkling wines and spirits available to the discerning buyer in supermarkets across the country. Mocktails are also a lovely option if you have the pleasure of going somewhere with a well-stocked bar, and even if you don’t, ordering something as simple as a grenadine and Diet Coke - which tastes like Cherry Cola and is often called a Roy Rogers - feels like getting something that’s a little fancy.

FANCY SODAS

Everyone likes a wee glass of Diet Coke every now and then (other carbonated beverages are available) but sometimes, you just fancy a drink that’s a little bit special. There are some brilliant independent brands across the UK who are producing gorgeous drinks that feel like a treat, but are alcohol free. We’re not just talking the traditional dandelion and burdock or ginger beer, incidentally, although who doesn’t like a ginger beer now and then? Square Root Soda are a UK based company who make fantastic, fizzy, fruity beverages out of East London, and offer a little discount on their website when you create your very own pick-nmix selection from their wide array of fancy flavours. Rapscallion Soda are based in Glasgow, and make beautiful, flavourful sodas using a huge array of local flavours and ingredients. Their Christmas variety bundle includes a cranachan flavoured drink, based on the traditional Scottish dessert featuring raspberries and oats. For something a little more continental, you can’t go wrong with grabbing a couple of bottles of Fritz-Kola (unless you’re sensitive to caffeine, in which case, maybe just be careful). This German company makes the most fantastic colas, which are made with less sugar than Coke or Pepsi, and offer a wide assortment of other tasty beverages, including orangeades and the weirdly delicious Mischmasche, which contains cola, orange and lemonade.

SEASONAL HOT DRINKS

Oh, the joy of a fancy hot chocolate at Christmastime, with a little scoosh of whipped cream and some toasted marshmallows. They feel so incredibly decadent, and are such a treat on a chilly morning. There are lots of cafes offering fancy seasonal drinks, so do check in with your local independent cafe if you can pop in for a visit, but chains like Costa, Starbucks, and Tim Hortons are offering some delightfully decadent drinks this year, and the king of the Christmas beverage, the gingerbread latte is back on the menu in many cafes. Many of these cafes are also on Deliveroo, Uber Eats, or Just Eat, so you can avoid the crowds and order a nice drink in if you feel like a little festive beverage!

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.

NO BAKE FESTIVE

TIFFIN

Can be GF and/or Vegan with straight swaps

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: 1 2-3 4 5 Preparation time: 20 mins

Makes: never enough! Give yourself time: 30 mins (plus 90 mins in fridge to set)

Cooking time: 0 mins

Freezer bag and rolling

HINTS & TIPS

Take your time with the melting of the chocolate mixture, slow and steady wins the race!

If you don’t have a rolling pin or bag, just break them up by hand or get someone to help give them a bash

WAYS TO CHANGE

Try using different flavoured biscuits, ginger, cookies etc

Mix up the dried fruits, the combinations are endless

Try adding some stem ginger for a bit of heat, even a pinch of salt or chilli flakes are delicious

Try flavoured dark chocolate

METHOD

Cut the greaseproof paper so it will fit into the bottom of the cake tin and also up the sides (no neatness required!) Add the biscuits to the bag and bash with the rolling pin to crush to small pieces (not crumbs)

In the saucepan, add the chocolate, sugar and butter and gently melt

KEY heat gently to melt, do not let it boil Once all combined and melted, remove the pan from the heat

Gently stir in the crushed biscuits, mixed dried fruit,

Whatisapressuresore?

PatientA

TheCaribbeanTurningBedhasliterallytransformedour lives.Previouslyweweregettingupmultipletimesduring thenighttore-positionhim,andthatwasseverely impactingbothhisandourwellbeing.Fromthefirsttime hesleptintheCaribbean,hesleptallnightwithno requeststobemoved,andhascontinuedtodoso. It'sgivenhimsomeindependencebackintermsofbeing

GOOD WILL TO ALL… BUT NOT YOU!

The festive season is upon us: a time filled with celebrations, parties and shopping for gifts for all the family. A season of goodwill to all, well, not all. Not for disabled people, it seems.

As the COVID lockdown took hold, I genuinely thought that it would create a deeper understanding of what it means to be disabled within the wider non-disabled community. Having your world shrunk and experiencing a loss of autonomy through no action of your own, I anticipated that the nondisabled world would finally wake up to the lived experience of the disabled community. I hoped it would see a real will to remove the barriers we face on a daily basis, to create a truly inclusive future for all. How wrong I was.

It soon became clear that what was going to happen was pretty much the opposite. As the world opened up, throughout the country schemes were rolled out that removed so many of the features that had been put in place to make the world more accessible, leading disabled people to feel their world shrink even more. A perfect example of what I mean is what is happening in the City of York.

I became aware of what disabled people were facing in York through Twitter. Flick Williams, a local disabled person and inclusion expert, highlighted the new barriers being installed throughout the city. At every turn, choices have been made that meant the city became less accessible to disabled people, and the council seemed to ignore the outcry.

I should say that I know York fairly well as I’ve visited many times for work

MIK SCARLET

COLUMNIST

Follow Mik on Twitter @MikScarlet

and had time to explore the city, so when Flick and others highlighted the growing access issues of the city I could picture exactly what they mean. I also know that the city already had some issues for disabled people, due to the old problem of it being a historic location filled with listed buildings and preservation zones. Anyone with access requirements feels the cold hand of fear as soon as the words historic, listed or preservation are spoken, because we know they usually mean “we can’t be arsed to make any changes”. In York, I found that there had been a greater commitment than in similar towns and cities in the UK, and the disabled people that lived there agreed that it wasn’t super easy but there was enough provision to make it a good place to live. That was until we started to come out of lockdown earlier this year.

All over the UK, the government provided funding to increase infrastructure to promote what is called Active Travel, getting people to walk and cycle more and use their cars less. As you’ve probably guessed, disabled people have been forgotten, or at least those who must rely on driving or being driven to get around. I could regale you with stories from most of the UK’s towns and cities, but let’s look at York as a prime example of what could be called a truly epic fail around the goal of using the push for more active travel to develop a more inclusive future for all.

If I tried to describe what has happened over the last year or so I would need a book rather than a column, but York has seen roads closed to prevent a possible terrorist attack, blocking access to blue badge bays, other roads closed with the same result to promote pedestrian areas, and restaurants and bars being given permits to use pavements as part of

their business footprint, filling them with tables and chairs and blocking any way through. Pedestrians are expected to go onto the road, but there have been no dropped kerbs installed around these pavement hogs, meaning wheelchair users and others must retrace their movement to find a way off the kerb.

Flick explained the current issue with outside eating: “City of York is ignoring the No Obstruction clause allowing cafes the full width of the foot path in non-pedestrianised streets. It is ignoring the rule that pedestrians should not have to ‘pass through’ areas with tables and chairs. It is ignoring the rule that says the placement of cafe furniture should not interfere with the principal lines of pedestrian movement. The council loves the economic boost this has given to business as time and time again they prioritise tourism. Fundamentally, York’s narrow medieval streets are not wide Parisian Boulevards”.

Campaigners such as Flick, herself an expert in accessibility, have tried to get the council to change their methodology but to no avail. I’ve watched online as photos of awful examples of making the city more inaccessible have been rolled out, despite the outcry of the local people.

York’s latest insult to disabled people is the two-storey temporary bar and restaurant, The Winter Hütte, being erected in the middle of York where there is no access to the posh restaurant, so if disabled people who cannot manage stairs want to eat a meal, they have to be served in the bar area. I feel for Flick and York’s disabled community, but I fear it’s just one of the myriad locations across the country where disabled people are being failed and further excluded.

Happy Christmas eh?

New

Year’s Eve

BY ROSALIND TULLOCH

New Year’s Eve (or Hogmanay as we say up here in Scotland), is a greatly celebrated event across the world, with street parties and fireworks, champagne popping and drams of whisky at midnight. However, sometimes you just want to close out the chaos and have your own little party on the sofa, so whether you are hosting a party, attending a dinner dance, or you have a much-anticipated night planned in front of the TV, we have you covered.

1

Tartan Blanket

If your idea of a good time for New Year’s Eve is snuggling up on the sofa with a hot chocolate, a good movie and the potential of a really good nap before midnight, then you will need a good blanket. Try this recycled wool, tartan blanket that is available in a variety of colours and will keep you extra cosy this year when you sleep through the bells.

TartanBlanketCo.com | £42

Gold Photo Props

Having a party? Staying in with some fizz for midnight? Your photos and selfies will not be complete without some fun props to make you and your friends look a little silly. This pack comes with eight props, from gold moustaches to arrow signs that say “drunk”, so you can make some funny memories.

PartyRama.co.uk | £2.19

3

Confetti cannon

Midnight would not be complete without some confetti being sprayed everywhere! This confetti cannon comes in the shape of a champagne bottle so you can recreate the illusion of spraying champagne everywhere – no one wants the reality of wasting expensive booze and making everyone sticky – this is a great alternative!

PartyDelights.co.uk | £5.49

4

ASDA Extra Special Crémant de Loire Brut

It’s lovely to treat yourself to a bottle of fizz on New Year’s Eve, but it can be expensive. Don’t feel the pressure of conforming to buying really expensive bottles of champagne to impress your friends, you can opt for something like this award-winning crémant from Asda, it is highly recommended, full of bubbles and will only set you back £10 - £12 per bottle. Asda.com | £10 - £12

5

Rose Gold Hammered Champagne Bowl

There is never enough room in the fridge for all the booze, soft drinks and food when you are having people over. This large champagne bowl is the perfect substitute for your fridge, simply fill it up with ice and some water and submerge your bottles of champagne, wine, beer and coke to ensure they are all kept cool. The bowl also looks great set up on a table for people to help themselves from. Aldi.co.uk | £16.99

6

Dipping Camembert and Bread

Looking for something to serve on New Year’s Eve that means minimum fuss and ultimate flavour? Get yourself down to Aldi to pick up this delicious cranberry, sage and onion bread ring with French dipping camembert in the middle, you will not be disappointed. It is the perfect dish to serve for a group of friends to all dive into and all you have to do is pop it in the oven.

Aldi.co.uk | £4.99

Easy on the Eyes

Get the perfect show-stopping golden eyes with this stunning colour palette from Guide Beauty. Guide Beauty specialises in creating accessible make-up tools to make application for anyone who struggles with dexterity much easier. Create a gorgeous shimmery look with ease, perfect for a New Year’s Eve party.

GuideBeauty.com | $79

8

Fortnum’s Traditional Shortbread

In Scotland, it is tradition on New Year’s Day to “first foot” someone, this means you are the first person to essentially step foot in their house in the new year. You traditionally have to take a gift, it can be anything from shortbread, whisky, coal, salt or chocolates (we know these sound like a very strange mix!), but if you turn up empty handed it is considered bad luck. Order a tasty tin of shortbread from Fortnum and Mason’s, and you will definitely be invited back again.

FortnumAndMason.com | £8.95

Sun Ray Statement Necklace

Looking for a striking statement piece of jewellery to set off your party outfit? We have you covered with this stunning sun ray necklace from the talented disabled creator Autumn Aurelia. This necklace will add a special touch to any New Year’s Eve outfit, making you stand out from the crowd.

Search Autumn Aurelia on Etsy.com | £46

Gold Star Backdrop

Transform your home into a spectacular party scene for New Year’s Eve with this twinkly backdrop of gold stars. It will add a touch of magic for a party in any home, you can use it as a backdrop for some amazing photos or as a partition between rooms. It is easy to hang and very effective.

PartyPacks.co.uk | £8

CELEBRATING DISABLED Creators

BY ROSALIND TULLOCH

accounts and websites we have come

This list is by no means exhaustive, there are so many amazing, creative ros@2apublishing.co.uk with some

and we will include it on the list on our website. Alternatively, send us a message on any of our social media accounts and we will help showcase

Kali Goodings is the creative genius behind these amazing gifts, her lived experience has allowed her to create a thoughtful selection of items that

disabilities, and bring a little joy to anyone who receives them. You will find the perfect gift for any spoonie friend here and we won’t blame you if you treat yourself to a little gift too.

CHRONICALLY DIVINE

You will find a superb selection of pins supporting the disabled community, from messages that include the dreaded term “But you look great…”, to adorable spooniecorns who bring a little magic to chronic illness. You will also find some amazing prints, mugs, stickers and mindful colouring pages. Shop here for the perfect stocking fillers.

Shop: Etsy.com/Shop/ ChronicallyDivine @ChronicallyDivine

DINKY DOTS

DOLLHOUSE

Get into the festive spirit with a handmade pair of Christmas earrings from Dinky Dots Dollhouse. Specialising in handmade miniature jewellery and accessories, you will find a sparkly festive collection that is both beautiful and affordable – our favourite are the sparkly gingerbread men! This inclusive business is run by a disabled creator and 10% of all monthly sales are donated to MIND and Bliss.

AUTUMN AURELIA

Autumn’s Instgram bio reads: “Queer, disabled maker of magical

Shop: Etsy.com/UK/Shop0/ DinkyDotsDollhouse Instagram: @DinkyDotsDollhouse

AMY PAINTS BITS

Amy makes beautiful, fun, home décor pieces, from personalised signs to gorgeous rainbow ornaments. You will find beautiful Christmas decorations too, including cheeky Christmas baubles, geometric stag’s heads, and festive peg dolls! Browse through this amazing selection of gift ideas and maybe starts adding items to your own Christmas list!

Shop: Etsy.com/Shop/ AmyPaintsBits Instagram: @AmyPaintsBits

CATHRYN WORRELL

Cathryn is an artist and illustrator living with chronic illness. Her beautiful art is available in the form of paintings, prints, mugs postcards and greetings cards. Her unique Christmas cards make a refreshing change from the busy noise on many of the cards you find on the high street, and we especially love the print of the bear wearing a scarf! The miniature framed prints would make a great gift for someone too.

CathrynWorrell.com @CathrynWorrell

PIXIECRAFT HANDMADE

Katy Rose Fisher creates intricate hand embroidery that will make you smile. From bouquets of kittens to messages of support, you will even find handstitched mini hoop necklaces for sale. Take a look at the feel good hoops to hang on your wall or gift someone a cute pocket calmer cushion in their stocking this Christmas. For adults who are not easily offended, we highly recommend you pop over to @TheProfanityPixie on Instagram because you will really enjoy it!

Shop: Etsy.com/UK/Shop/ PixieCraftHandmade

Instagram: @PixieCraftHandmade

COLOURBLIND ZEBRA

You will not find a more colourful collection of goodies than in the Colourblind Zebra shop. This rainbow coloured zebra is a beautiful symbol for inclusivity and it looks adorable on t-shirts and hoodies that are available to buy too. Browse through a fabulous array of pins, keyrings, clothing and more, to brighten someone’s day with a little gift.

The Colourblind Zebra is raising awareness one rainbow at a time.

Shop: ColourblindZebra.com

Instagram: @Colourblind_Zebra

TIDING OF MAGPIES

Get your beautiful jewellery fix over here. Handcrafted, delicate pieces that will surprise and delight anyone who receives them. You will find classic, modern jewellery with a twist, utilising colourful gems and delicate chains. Created by Florence in the historic jewellery quarter of Birmingham, you can see the creativity and passion that has gone into every piece.

Shop: Etsy.com/UK/Shop/ TidingOfMagpies

Instagram: @TidingOfMagpies

SKELETONOTES

Robin Tynan is a water colour artist and urban sketcher who creates beautiful prints and greeting cards. They have some stunning and unique Christmas cards available at the moment, some with a wonderfully gothic twist. They also offer a personalised service which allows you to choose the image and a phrase for your greeting card, creating something extra special for a friend or loved one.

Shop: Ko-Fi.com/Skeletonotes

Instagram: @Skeltonotes

DATES FOR YOUR DIARY

As the disabled community becomes more comfortable with attending events, we take a look at the exhibitions and events coming up in 2023. Disability-focused events can be a great way to research products and services, to speak to the experts and try out mobility products, or to attend talks presented by well-known voices from the disability community. Here are some dates for your diary in 2023.

NAIDEX

22-23 March | NEC, Birmingham

We will kick off the year with the 50th instalment of Naidex, one of the largest disability exhibitions in Europe. It is hard to believe that Naidex is celebrating its 50th anniversary, and we can’t wait to join them for the celebrations in March, so come and find us as we will definitely have some goodies on our stand! The event covers a wide array of areas, including families and the transition to adulthood, education and employment, lifestyle and leisure, sex and relationships, and more. You will also find an adaptive climbing wall and a performance area known as the Village Green where you can watch interactive demonstrations. This is one event you won’t want to miss, and tickets are free so make sure you register today!

Naidex.co.uk

KIDZ TO ADULTZ EVENTS

16 March – Kidz to Adultz MiddleCBS Arena, Coventry

16 May – Kidz to Adultz South – Farnborough International Exhibition and Conference Centre

21 Sept – Kidz to Adultz Wales and West – ICC Newport, Wales

Date TBC – Kidz to Adultz North –Manchester Central

These events are dedicated to children and young adults with disabilities and additional needs, their parents, carers and the professionals who support them. These events have been running throughout the UK for years and they provide families with disabled children a safe space to explore mobility aids, seating systems, hoists, sports equipment, education opportunities and more. KidzExhibitions.co.uk

DISABILITY EXPO

6-7 July | ExCel, London

Disability Expo is a new event for 2023, and it promises to be the UK’s leading person-focused event for disabled people. Taking place during Disability Pride Month, this free-to-attend two-day event will offer relevant services, products and information to empower you to lead the life you choose.

The event will be officially opened by disability advocate Baroness Tanni Grey-Thompson, and the full event programme will comprise inclusive activities, performances and discussions from engaging and relatable people, sharing their experiences, skills and expertise.

You will have the opportunity to browse hundreds of exhibitors offering a range of equipment, from the latest innovations in independent living, mobility aids and technologies, to an array of charities and organisations.

TheDisabilityExpo.com

The event will be officially opened by disability advocate Baroness Tanni Grey-Thompson

NAIDEX CELEBRATES ITS 50TH BIRTHDAY!

Registration for Naidex, the flagship event for the disability community is now live. The event will take place 22-23 March 2023, at the NEC in Birmingham.

National Accessibility, Inclusion and Disability Expo (Naidex) is the largest, and longest running disability event in the UK, with the 2023 event celebrating 50 years.

Naidex is for everyone, and welcomes anyone who is living with a disability, as well as anyone caring for or supplying to the community. The event falls across two days so there is enough time for you to discover all that Naidex has to offer! With content, products and features covering mobility, employment and work, health and wellbeing, independent living, family, sports, rehab/care, relationships, entertainment, food and drink, there is something for everyone. Some of our exhibitors include Hidden Disability Sunflower,

eFOLDI, Rollz, Neo-Walk, Cyclone Technologies, Therapy Gyms, Motability and many more. Additionally, Naidex are partnering with Disability Horizons to bring to you the Naidex Marketplace, where you can find smaller and affordable daily aids, tools, and resources to take home with you from the show.

If you wanted to experience the interactive features at Naidex, there’s a chance to attend the much-loved Village Green (which was new for the 2022 show) and join in with Mr Cookfulness’ cooking session. Try out the Mobility Test Track or take on the Adaptive Climbing Wall.

We also have some fantastic speakers across the show, with our recent announcements including Tommy Jessop (multi-award-winning actor, best known for starring in Line of Duty), Steve Thompson MBE (former England rugby player and World Cup winner) and Lauren Steadman MBE (professional athlete and Paralympic champion), who you can catch on the

main stage.

There are also two other theatres: Accessibility and Care Theatre and Lifestyle and Leisure Theatre. Accessibility and Care will feature seminars drawing upon lived experience of caring for loved ones and the newest assistance technologies and adaptations that are enhancing care and independent living. Our first speakers have been announced as Charlie Beswick who is an author and blogger, and Sally Chalk who is CEO and founder of Signapse. Lifestyle and Leisure is designed to promote improvement of daily living and overall wellbeing, including sessions from sports to dating and sexual wellbeing, there is certainly something for everyone to enjoy in this theatre.

The Naidex team can’t wait to welcome you to the NEC once again for what is set to be a fantastic event, the team are pulling out all the stops!

Register for your free tickets at Naidex.co.uk

The UK’s biggest disability expo celebrates 50 years of events

HEATED BLANKET

Keep yourself warm this winter with a USB-powered, heated blanket. This soft plush blanket can be worn like a shawl, draped over your knees or used as a seat cushion, ensuring you are cosy no matter where you are. It has three temperature settings and it can be charged on the go with a power bank.

Prices from £23.99 Amazon.co.uk

THE MINDFULNESS PUZZLE BOOK

If you need a little time to yourself this Christmas, you may want to sneak off to a quiet place with this book to relax and unwind. De-stress by doing some crosswords, word paths, dot to dots, or mazes, and allow yourself a little me time at this busy time of year.

Prices from £6.46 Amazon.co.uk

LIFE-SAVING WRISTBAND

Though it looks like a fitness tracker, this super lightweight, fully waterproof wristband with a 12-month battery gives you uninterrupted protection and the freedom to live your best life.

The Assure has three triggers to let your family or friends know you need help. It can monitor for severe falls and includes unique “I’m OK” checks to confirm you’re OK at times you choose.

It can connect to your smartphone to keep you protected when out and about, giving you confidence and independence to enjoy your best life.

Prices from £70.00 Acticheck.com

We bring you a mix of the most innovative and helpful products on the market today

RAVENCOURT BUTTON CLOCK

This talking button alarm clock is simple and intuitive, it supplies the time, day and date at the touch of a button and can also be used to set alarms on demand. It only needs two AAA batteries and it can be placed anywhere in your home to be easily accessed at any time.

Prices from £20 Argos.co.uk

ANGLED AID

Active Hands are specialists in gripping aids and they have just launched a new angled aid to allow users to hold racquets at an angle comfortable to them. This aid is designed to be strapped around the hand allowing you to fit it at the perfect angle to play tennis, table tennis or baseball, or even to hold a hammer when you are tackling some DIY.

Prices from £79.95 ActiveHands.com

MOTOMED LOOP.LA

The MOTOmed LOOP.LA is designed to help improve user’s standing and walking ability, maintains strength and cardiovascular fitness, and regulates better blood pressure. It has a 7-inch touch display screen that allows for easy and intuitive operation, allowing users to switch easily between leg and arm training. It includes therapy and motivation programmes, as well as games and videos for users.

Prices available on request Medimotion.co.uk

THE FREEDOM TO

Travel

BY ROSALIND TULLOCH

Travel has taken a backseat for the last couple of years, the world has been off limits to us due to the pandemic, but now that travel appears to be a realistic option again for many of us, it could be time to satisfy those travel urges and go in search of some more exotic shores.

inding accessible holidays that cater for your individual needs and that of your family can be exceedingly difficult. Hours of research, reading reviews, communicating with venues and double checking access or equipment available can be exhaustive, especially if the information on the accessibility of a property is unreliable. There are too many reports of disabled guests arriving at accommodation only to find the accessibility information has been inaccurate. This can be a devastating blow to a disabled traveller and it can impact people’s confidence in travelling and exploring other countries, as well as their own.

Most of you will be familiar with Airbnb as a platform to book accommodation in the UK or abroad, whether you have used it personally or not.

Airbnb is a platform that invites people across the globe to rent out their home to guests. Whether that be a house, flat, apartment, boathouse, caravan or yurt, you can rent it on Airbnb.

Airbnb does list accessible properties and allows users to search for suitable accommodation by using a comprehensive list of accessibility filters. These properties are checked and verified by Airbnb to ensure the accessibility features that the property conveys are genuine, so you can have confidence when booking.

NEW ADDITIONS

The great news is that Airbnb are committed to catering for their disabled travellers and they have recently announced some accessible additions to the platform.

In May 2022, Airbnb launched a new way of searching for properties on their site by categorising them into areas like, beachfront, castles, farms, vineyards, islands, treehouses – no matter what style of property you are looking for you will find it on here, or you will at least have fun discovering all the different places. The categories allow users to pick any category they like and just scroll through the properties to get inspiration for their next trip.

It is a wonderfully enjoyable way to discover amazing properties that you would not otherwise come across if you were restricting your searches to one location. Scrolling through pages of amazing, unusual, secluded or eco-friendly homes can be exciting and fun and users can get lost in the imagination of their next trip. However, this is not a luxury afforded to anyone who has mobility issues or access needs.

Wheelchair users and guests with mobility impairments must use the access filters to ensure they find an accessible home that will cater to their needs, and while Airbnb do have a great selection of filters and stringent processes to ensure the properties are as accessible as they say they are, there has been no other way to search or find inspiration for accessible properties.

Until now.

Airbnb have introduced six new categories to their website and one of those categories is the Adapted category. We spoke to Suzanne Edwards, accessibility standards lead for Airbnb and a wheelchair user herself, who passionately spoke about the addition of this category for the disabled community, as she believes it could “revolutionise travel for guests with mobility needs”.

Talking us through the new Adapted category Suzanne highlighted that just one click from the homepage will take guests to the Adapted listings via the universally recognised wheelchair symbol at the top of the page.

There are too many reports of disabled guests arriving at accommodation only to find the accessibility information has been inaccurate

This will take you to a tempting mix of wheelchair accessible listings from all over the world, allowing you to scroll through a huge variety of homes all with one thing in common: accessibility. Additional accessibility features have also been added to the world map, allowing users who do not have fine motor skills or who use assistive technology to move around the map using toggle features for zooming and panning, instead of pinching and dragging.

Airbnb have chosen some amazing adapted homes to be featured in this category, and Suzanne explained how Airbnb committed even further to verify and highlight accessibility information for guests:

“We wanted to go a step further for the homes in this category so we partnered with Matterport who is a leader in 3D space capture and for every single home in the Adapted category we worked with the team at Matterport. They have a team of global technicians and we did 3D scans of all of these homes to verify all of the accessibility features that they had, such as the height of the thresholds or the widths of the doorways, and different features they have in the home.”

The 3D scans also provided them with 2D floorplans that have been added to

the main photo set of each of the listings. Listening to their community of disabled travellers Airbnb recognised that floorplans were an important addition for many people to understand the layout of the home and the configuration of where each room was, these floorplans also feature all of the room sizes too.

This comprehensive approach to accessible accommodation listings opens up a world of travel opportunities to the disabled community. You can book the trip of a lifetime, a weekend break, or a family holiday with confidence, knowing that your accommodation will cater to your access needs, so you can relax and enjoy your time away.

What are you waiting for? Start making your travel plans today at AirBnb.co.uk/

AdaptedHomes

Portugal

Canada

New Zealand

GETTING ENGAGED

KATIE CAMPBELL

Looking for something to do in that weird time between Christmas and New Year? Get cozy on the couch and check out some of these disabled, chronically ill and neurodivergent YouTubers.

JESSICA KELLGREN-FOZARD

The absolutely fabulous Jessica Kellgren-Fozard is a deaf YouTuber who creates a wealth of content about a host of subjects she’s passionate about: LGBTQ+ issues, disability and chronic illness, vintage fashion, and her experiences with motherhood. Yes, she does dress in vintage fashion every day, and yes we know it’s beautiful! A recent video explored how she’s raising her son Rupert to be bilingual as a speaker of British Sign Language (and an exploration of how Sign Supported English is different and not interchangeable with BSL) and English. Her channel is uplifting, educational, and outrageously stylish, so there’s bound to be a little something for everyone in her videos!

youtube.com/@jessicaoutofthecloset

THE TRY GUYS

YouTube stalwarts The Try Guys found themselves in the midst of a bit of a media furore recently after a quite public split with founding member Ned Fulmer, but their content remains fun, funny and irreverent. The Try Guys are comprised of Keith Habersberger, Eugene Lee Yang, and Zach Kornfeld, the latter of whom lives with ankylosing spondylitis (an autoimmune condition which causes inflammation of the spine) and chronic pain. Zach’s videos exploring how he lives with chronic pain and continues to navigate the pandemic are excellent. His video “Why Don’t We Care About Disabled People” is a fantastic exploration of his own anger regarding attitudes towards disabled people as he’s come to terms with being a disabled person, and features interviews with other fantastic disabled creators, including the wonderful Imani Barbarin.

youtube.com/@tryguys

Jessica Kellgren-Fozard

The Try Guys

MOLLY BURKE

Molly creates fantastic content exploring her life as a blind woman with her guide dog, the spectacularly named Elton John. Molly’s content is a fantastic exploration of her own life, helping others to understand the nuances of vision loss. Her video explaining how her previous guide dog Bennix had to retire is one of her most moving, emotional videos; it’s a raw, loving portrait of how important service animals are to the people who love and rely on them, and the heartbreak that people can experience when they’re separated from an animal who they not only adore, but is also a mobility aid.

youtube.com/@MollyBurkeOfficial

HANNAH WITTON

Calling Hannah “brilliantly honest” would be a complete understatement: Hannah creates content surrounding sex, relationships, and bodies with Mona - her ileostomy! Her videos are educational and fun, delivered in her friendly, straightforward style, that highlights the importance of taking an intersectional viewpoint and ensuring that the views of lots of different people - LGBTQ+ people, disabled people and many others - are considered and included. Her videos on what her stoma taught her about sex and relationships are incredibly eye-opening, as are her videos about her pregnancy, including an hour-long deep-dive into what pregnancy was like with her as an ostomate. If there’s ever been a question you wanted answered about sex and pleasure, Hannah likely has a video that will not only answer it, but make you feel like you’re not alone for wanting to find out.

YOU LOOK OK TO ME

Jameisha Prescod makes the most phenomenal videos exploring chronic illness. Almost all of the videos are under ten minutes, but the education that you’ll receive in those ten minutes could not be more invaluable: “How Medical Racism Changed How Doctors Test Our Lungs” explores the racism that permeates the medical field, and the racist myths that originate from the 1700s and continue to affect Black patients to this day and perpetuate health inequality. “Why Dr House Says ‘It’s Not Lupus’” is a brilliant exploration of Dr House’s insistence across the show that his patients categorically do not have the autoimmune condition, and how lupus has become a meme outside of the TV show. Jameisha’s videos are absolutely fascinating, and take a measured, easily digestible view of how pop culture represents chronic illness.

youtube.com/@YouLookOkayToMe

You Look Ok To Me

Hannah Witton

Molly Burke

Review Time

If you have you ever been somewhere with amazing disabled customer service or access, you should take the time to share your experiences by leaving a review on Euan’s Guide. Your review could give someone in the disabled community the confidence to visit a new place, and that’s a great gift to give this Christmas

The disabled access review charity Euan’s Guide has been working hard for nine years on behalf of disabled people to break down barriers in society when it comes to accessibility and inclusion. The award-winning charity is best known for its disabled access review website where disabled people, their families, friends, and carers can find and share the accessibility of venues around the UK and beyond.

The website shares thousands of experiences and is the go-to tool for many disabled people who are researching places they might want to visit, so it really is a great way to find accessibility information before

visiting somewhere new – especially when they’re often told that just one review from someone with similar access requirements can give someone else enough confidence to visit somewhere new, from holiday homes and parks to bars and restaurants.

There are thousands of people using the website every month, so the charity really is opening doors for disabled people to find great places to go and, by breaking down barriers of exclusion, everyone has the freedom to explore. In addition, they run the UK’s largest Access Survey and make tens of thousands of toilets safer through their Red Cord Card scheme.

The website shares thousands of experiences and is the go-to tool for many disabled people

Euan’s Guide is always looking for people to submit reviews and the people who leave reviews are a number one priority for them. By sharing lived experiences disabled people are helping to make the lives of other disabled people easier and this is something that Euan MacDonald, the founder of Euan’s Guide, set out to do when he established the charity with his sister Kiki in 2013 after he was diagnosed with Motor Neuron Disease. Euan and the team believe in making the world more accessible one review at a time – but it’s the people who are behind the reviews who really make the magic happen. The more people who feel they can contribute, the better.

If you’re someone who enjoys going out and about and you’d like to help make a positive difference to the lives of other disabled people, Euan’s Guide would love to hear from you. Their website is a platform for you to share your thoughts on where you’ve been and these reviews can be as long or as short as you like. You simply create an account, which you can anonymise if it helps you get started, and it’s these first-hand experiences that really count, whether you spend three minutes typing a review or three hours – just get started, knowing the Euan’s Guide team is there to support you.

If you’re already a keen reviewer at Euan’s Guide, there’s more you can do to help if you have the time. Euan’s Guide would love to feature more volunteers on their blog and having

support at events on both a small and national scale is hugely appreciated by the team. Tina Hodgkinson is the London Ambassador for the charity and donates her support generously to Euan’s Guide.

She said: “Euan’s Guide is supportive and this has helped me to grow in confidence both as a disabled woman and as an Ambassador, enabling me both on a personal level and as a volunteer to do things. In my case, writing articles or having the courage to raise access issues directly with venues when I visit them, neither of which I would have considered when I first started out as a volunteer.”

The charity is incredibly grateful for all of their Ambassadors’ activity and Tina often contributes reviews and blog posts while regularly engaging on social media to share all-important disabled access information with support from Euan’s Guide.

If you’d like to get involved, you can do so by submitting your own review. All you need to do is register online at EuansGuide.com to create an account which will allow you to leave a review and don’t worry, the team will help you if you get stuck. In just a few clicks, you can submit a review that will allow other people to find out what you think about a place you’ve been, helping them to decide whether they give it a go too. Remember, just one review can give someone else the confidence to visit somewhere new so your contribution to EuansGuide.com really will be invaluable.

Visit EuansGuide.com to find out more about reading and submitting reviews and give them a follow on social media @EuansGuide if you want to find out more.

just one review can give someone else the confidence to visit somewhere new

Kids’ CORNER

Christmas is finally here, Santa is coming, the decorations are hung, the kids are fuelled by advent calendar chocolate, and hopefully there is a pot of mulled wine warming on the stove for the parents. Christmas can be a very stressful time of year, juggling presents, family, food, decorations, and parties, not to mention entertaining the kids over the Christmas break. We have come up with a whole host of fun, creative activities that you can do with the kids this winter. These activities are designed to allow everyone to get involved and they will not cost the earth, so you don’t have to constantly worry about forking out the extortionate prices of literally any kid’s activity in December.

We also look at the five Christmas gift rule as a way of balancing Christmas gifts for children this year. You can still make their Christmas magical, while getting them items they need and want. It’s a great way to reduce waste, save money and bring a little joy to your kids this year.

You will find the usual selection of kid’s products on page 52, our regular instalment from Dan White and we hear from Scarlet Novak in our Future Voices column on page 55. We would like to wish you all a wonderful Christmas this year.

It’s Christmas!

BY ROSALIND TULLOCH

The most wonderful time of the year

It is certainly the most magical time of the year for children, with the anticipation of Santa, the excitement of presents, Christmas trees, parties and snowfall, kids can barely contain themselves at Christmas! It doesn’t help that most of them start each day with a chocolate from their advent calendar, there’s nothing like a sugar rush in the morning.

Christmas can be an overwhelming time for families though, and this is especially true this year. Lists for Santa are growing ever longer, with expensive gadgets, smartphones, iPads and the latest games consoles putting even more pressure on families. Plastic toys also fill homes at this time of year as children are

inundated with gifts from family members and friends – most of which will only be played with a handful of times, before kids lose interest and move onto something else.

It is a wonderful thing to spoil children with gifts at Christmastime, but it can become too much and it can build unrealistic expectations for future occasions, it can also be very difficult to manage those expectations and find a good balance for present giving.

There is a good rule that many families stick to this time of year, known as the four gift Christmas rule, but it has since evolved into the five gift Christmas rule and this fifth addition is open to interpretation.

WHAT IS THE FIVE GIFT CHRISTMAS RULE?

The tradition of this rule began with four items to create a balanced gift giving experience for children, helping families to give gifts to their kids things that they have asked for and also gifts they know they need and will enjoy. The pledge they follow is: something they want, something they need, something to wear, and something to read. The fifth one has been added in a variety of ways, some use someplace to be to include a family experience, and some use it as a way to buy their child something special that they are not expecting.

1 SOMETHING THEY WANT

Most kids have a main present at the top of their list, it might be a bike or a scooter, a smartphone or a swing set, a dollhouse or an art set. Hopefully it is within reason and within your budget to allow you to spoil them with this, but if it isn’t don’t be afraid to ask family members and friends who would usually buy them gifts to instead contribute towards their main present. This is a great way to spread the cost and it can help avoid a lot of unwanted gifts too!

2 SOMETHING THEY NEED

As the parent you are fully entitled to decide what your child needs this Christmas. This gives you an opportunity to buy them something that you actually need to buy them anyway which saves you money in the long run! It could be that they need some new snow boots, or a new tennis racket, or a new set of colouring pencils, whatever it is they will be delighted and you will be happy that it is something you needed to buy anyway!

3 SOMETHING TO WEAR

This is a great opportunity to buy your kids some clothes they not only want, but need. Buying them clothes is a really practical gift, but something they can also get excited by, especially if you know the style they like or if they have pointed something out. Use this to buy them an outfit to wear on Christmas day that will also be used at any other parties they are invited to for the next few months, or get them those trainers they have wanted for ages.

4 SOMETHING TO READ

Some kids adore reading books, and some kids are not avid readers, but whatever their affinity for reading you will be able to find a book to suit their tastes. If they are not into fictional stories and characters, find a biography of someone they are interested in, or buy them a joke book or book of interesting facts. If that doesn’t appeal, consider a magazine subscription to something they will enjoy, there are some great educational and fun magazines out there and this is a gift that will keep on giving all year long.

5 SOMETHING SPECIAL

Interpret this in any way you want. You could use it to plan an experience, like snowboarding or a visit to an adventure park, or use it to buy something you want your child to have that they haven’t even thought of asking for. It can be as big or as little as you want, it can be a thoughtful token or a trip to look forward to. You could give the gift of time by setting aside a special day for you and your child where they get to decide how you spend it. This is your way to give something extra special this year and it doesn’t need to cost you a penny.

Winter Fun

BY ROSALIND TULLOCH

Getting messy and creative for the holidays

This winter we take a look at some of the indoor activities that you can set up to keep the kids amused throughout December. These activities are all cost-effective and fun for the whole family, so everyone can join in. Just be prepared to get messy!

PLAYDOUGH SNOWMEN

Time to get a little messy and creative and make a family of fun playdough snowmen. You just need flour, salt, water and oil, with the optional addition of glitter if you want to make your snow look twinkly. There are many recipes for making playdough online to give you the correct quantities depending on much you need, you can also colour it with food colouring to make a whole rainbow of colours if you want to sway away from the traditional snowy white (maybe steer clear of yellow, no one likes yellow snow). Kids will love rolling it into balls to make the body and head for the snowman. They can then work on making the eyes and a carrot nose, and using buttons to decorate.

CHRISTMAS

BAKING

Find a simple biscuit recipe to prepare (BBCGoodFood.com is always a good place to look for this), look out some Christmas cookie cutters and set out an array of sprinkles for kids to work with. Rustle up some icing by using icing sugar and a little water, adding to make the right consistency for letting kids spread over the biscuits. Using a range of Christmas biscuit shapes, from trees and baubles to bells and presents, you can encourage little ones to get as creative as they like with edible sprinkles. The best thing about this activity is that you all have a tasty treat to enjoy at the end.

MEMORY TRAY

The memory tray game is a great fun way to pass the time over the holidays, and you can even make it into a competition for the whole family! You can make this a festive themed game by ensuring all of the items you put on the tray link to Christmas or winter. Use items like baubles, chocolate Santas, tinsel, stars, candles, ribbon and anything else you can find around the home. Give children a minute to observe everything on the tray and then take it away and ask them to list all the items they remember from it. You could also remove the tray and take one item off before returning it and asking the children to figure out which item is missing.

MAKE SNOW

It is very unlikely we will have a white Christmas this year so we will have to make do with making our own snow! Making snow can be a great sensory activity to get children involved in, and it can be used for making pictures or creating snowy winter scenes. Mix equal parts of cornflour and bicarbonate of soda, then add a very small amount of water gradually until the mixture comes together and crumbles creating a snow-like consistency that can be sprinkled around.

MAKING SNOWFLAKES

MARSHMALLOW SNOWMEN

These tasty treats are perfect for kids to create and eat straight away or add to a hot chocolate on a frosty day. All you need is marshmallows, chocolate chips for the eyes and buttons, fizzy laces for a scarf, an orange gummy sweet for the nose, a chocolate (maybe a Rolo) for the hat and pretzels for the arms. Simply melt a little chocolate in a bowl, add three marshmallows onto a wooden skewer stick and use the melted chocolate like glue to start decorating. Make hot chocolates and let the kids start melting their marshmallow snowmen in them for a tasty treat. This is definitely one for the adults to enjoy as well.

CREATE A SENSORY SCENTED BOX

Sensory boxes are a fantastic tool to allow kids to explore their senses and they are fun to make too. Christmasthemed boxes can indulge the senses with a mixture of scents, textures and sounds. A great option to fill out your box with is dyed, scented rice and pasta, simply add dry rice and pasta to a bag with a splash of vinegar, some red or green food colouring and some peppermint essence for that wonderful candy cane smell. Lie the rice and pasta on a tray overnight to dry out then pop it in the box and find some fun items to add in for kids to play with. Mini baubles and tinkly bells are great additions, as are fluffy pom poms, foam shapes and toy stars. Introduce cupcake cases and little spoons to allow kids to scoop and fill the cases until their heart’s content.

Paper snowflakes are a wonderful activity that allow kids to get creative and practice their scissor skills. This simple activity only requires some scissors and some paper, but it can be wonderfully creative and fun. Encourage your kids to experiment with cutting different shapes out of the folded paper to see the different snowflakes they can make. You can then also go on to colour these in or add some glitter to make them sparkly and festive, and you can then decorate your windows with them too.

CHRISTMAS CARDS

Getting crafty and Christmassy can produce some wonderful and personal cards that can showcase children’s talents and develop their arty skills. This messy activity will get the creative juices flowing, and using a large array of craft items, glitter glue, pasta shapes and Christmasthemed confetti can create some beautiful cards. They can then be sent to family members to bring a smile to their face, we all know grandma and grandpa love a homemade card.

Kids’ PRODUCTS

EDZ KIDZ EAR DEFENDERS

Lightweight but strong, these ear defenders help reduce sound in noisy environments, ideal for children and young people who experience sensitivity to noise or busy environments. The ear defenders fold away when not in use, making them simple to store and carry, and are available in a wide assortment of colours.

Amazon.co.uk

TRAVEL SIT

This supportive seating system has been designed to be taken with you wherever you go. The back rest is made up of four adjustable trunk supports, two safety belts and an anatomical headrest. There are six supports which stabilise the child and can be adjusted to the width of the seat, you will also find an adaptable abductor for lower limb abduction, pelvic belts and a lounger frame for use at ground level.

01788 892 056

Ergonomically designed, the wide base on this cup makes it more difficult to knock over. It’s got a soft but grippy exterior coating, and can be used for hot drinks as well as cold, making it an ideal mug for hot chocolate season. Its interior is made of tritan, which the makers claim is indestructible, and is dishwasher- and microwave-safe.

TumTumTots.com

Labels can irritate children, especially those with sensory sensitivities, and cutting the labels off can sometimes make the problem worse. Undercover Tape is a hypoallergenic, latex-free, self-adhesive tape that smooths over itchy or irritating clothing tags. Usable on delicate fabrics, it can last up to five wash and dry cycles on clothing.

02380 971 002

SensorySmart.co.uk

STOCKING FIDGET TOY

Looking for a festive-themed fidget toy? We have found these adorable sensory fidget stockings in a wide array of colours so you can find the perfect one for your little one at Christmas. The great thing is that you can play with them and use them as a mini stocking too.

LightInTheBox.com

CHRISTMAS HOT CHOCOLATE SPOONS

Treat the kids to a luxurious hot chocolate this Christmas, that they can make all by themselves. Choose from a chocolate Santa, reindeer, or snowman, and all you have to do is heat up some milk and then let the kids dip their chocolate character in and stir until it melts, making a delicious hot chocolate treat. This makes a great stocking filler.

CocobaChocolate.com

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.

SCARLET NOVAK

Scarlet Novak is a 24-year-old non-binary American. They are a disabled disability advocate, and mobility aid user, and are passionate about disability justice and empowerment.

Ihave been some form of disabled my whole life, however, I didn’t start using mobility aids until I was 19. I’m now 24 and in that time I have used: a cane, forearm crutches, a rollator, a manual wheelchair, and a power wheelchair. Many people, including some of my family, felt pity and in some cases shame that I use mobility aids. To be honest, at first, I also felt ashamed. There is a lot of stigma surrounding the use of mobility aids, especially as a young person. My whole life, the media, news stories, and people around me made mobility aids out to be a tragedy and an absolute last resort. I remember when I started using a cane, I got a folding one, not for convenience but rather so I could hide it in my backpack. As someone with social anxiety, I’m already constantly worried about what people think. My need for mobility aids led to a lot more fears that people were judging me for using them.

To put it simply, I had a whole ton of internalised ableism. For months I tried to get along without my mobility aids whenever I could, even if it damaged my body. Finally, I reached a point where I needed a mobility aid anytime I left the house. This was kind of a turning point for me.

Reaching the point where I had no choice but to use my mobility aids shifted me into a state of acceptance. I got mobility aids that matched my style. I decorated my mobility aids with stickers and duct tape. I realized finally that mobility aids are a source of empowerment, rather than something to be pitied or ashamed of.

Part of me wishes I could go back and tell myself to stop pushing my body beyond its limits - that it’s OK to use mobility aids, even if I could technically go without them when it will do damage to my body to do so.

Today, I use a cane around the house, and a rollator on my bad days. Most of the time when I leave the house, I use a power wheelchair. No hiding that in my backpack!

Sometimes I still do experience shame and anxiety going in public with my mobility aids, but I’ve come a long way. I’ve worked hard to weed out the internalised ableism that had overgrown my thinking in my early days of using mobility aids. As I lost my unaided mobility, my mobility aids reconnected me to life, and I’m forever grateful for that empowerment.

My hope for others who could benefit from mobility aids is that they will learn to overcome their own misgivings, using and loving the tools that help them live their best lives.

The truth is: Using a catheter should be gentle, hygienic and easy – home or away

For your FREE SpeediCath® Flex Set Sample Pack, fill out the form below, pop in an envelope and post to FREEPOST COLOPLAST (that’s all, no stamp required)

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That’s why we took SpeediCath® Flex and turned it into a set. You get Triple Action Coating Technology, our unique hydrophilic coating, which helps reduce your risk of UTI and injury to your urethra.* Its flexible tip and dry-sleeve design make insertion gentle and hygienic. And the SpeediCath Flex Set features an all-new bag. It’s dry to the touch and easy to open and empty so your hands and clothes stay dry. So now you can catheterise with no mess wherever you like – and get on with your day. * Compared to uncoated catheters

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DAN WHITE

THE GOOD FIGHT

Ihad hoped at the start of the year that with lockdowns becoming part of history and the promise of a golden summer, that 2022 would see the collective slow exhaling of stressed and anxious lungs from all over the country. However, little did we know that beyond the horizon there was another storm brewing and that its arrival would be catastrophic, this storm was the cost of living crisis.

Since January, I have worked on seemingly nothing else. The big question though, is how did this crisis start? Well, blame the pandemic in the first instance. As well as tragically decimating the disabled community, with two out of three pandemic deaths being a disabled person, the pandemic had a negative effect on disabled people’s and carer’s physical and mental wellbeing. Lockdowns put consumer spending on hold, especially disabled consumers who to this day, are still wary of the outside world. When lockdowns were lifted, those not forgotten by the government rushed to spend the money they’d saved, but ongoing supply chain issues meant supply could not keep up with

demand, driving up prices. Whichever way you look at it, the legacy of COVID was one of ableism with left us forgotten and exposed to catastrophe. The COVID enquiry which has just begun will no doubt point a finger of rightful blame at our leaders.

Prices in the UK have also skyrocketed because of the Ukraine conflict. Russia is a major supplier of European gas, while Ukraine exports much of the continent’s grain and sunflower oil. So, the war has caused shortages and rising costs, particularly for food and fuel, and fuel of course is essential to our combined communities of care and disability as the equipment our children and disabled adults use eats energy, but is necessary for good physical and mental health. I have been hearing stories of people making terrible choices on what equipment to turn off to save energy, as well as disabled people on pre-payment meters self-disconnecting because they cannot afford to top up their meters. The help given financially by the state was so far distant from reality it was offensive.

The effect of war and global supply on food is not unnoticed by disabled people and carers, I myself use the Trash Cafe in our local town but, for some, even that is not enough. The cost of living crisis has seen disabled people use food banks more than anyone else, and parent carers are skipping meals just so their disabled children can eat, the tragedy is that a weak, malnourished carer is putting both lives at risk.

All this has swept through this year like a chill, it’s like a nightmare story of cause and effect, with our community being the worst affected. From pandemic to poverty in less than 12 months.

However, where there’s tears, there’s hope. What I have seen this year is passion, solidarity and resistance, an incredible combined fight back on a massive scale, a unity, especially from charities and organisations that previously would not work with each other, now uniting to say no more. I have seen families from all ethnic backgrounds plan and campaign, I have witnessed communities support each other, a real belief in helping and enabling. Even as a policy and campaigns officer I have never been given so much support from backbench politicians and opposition members to my relentless work. I have been astounded by the giving of time and money to families and people from all over the country, this gives me hope that although 2023 will not start as a clean slate, it will shake the system into providing better financial and physical support. But what for now?

Well, the best Christmas presents would be the inflation increase of benefits happening now, a new fixed social energy tariff for disabled people and carers, the banning of pre-payment meters, the rise of carer’s allowance to be on par with the minimum wage and for the decision makers to sit down with me, admit their errors, indulge their hidden humanity and ask, “what can be done?”

Merry Christmas all, 2023 will be a rough ride, but we will never give up, never give in, we are owed a future and we are fighting for it.

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.

YearA IN

BY KATIE CAMPBELL

JANUARY

MARCH

15

A T-shaped electricity pylon is installed on the national grid. This is the first newly-designed pylon since 1927! Can you tell we’re desperately trying to find good things that happened this year and struggling? No? Ok!

31

The free lateral flow test scheme ends in England, adding a degree of inaccessibility to people who need lateral flows to keep themselves safe as COVID is still very much a dangerous thing that exists.

APRIL

01

The energy cap rises by a staggering 54%, with disabled, chronically ill and neurodivergent people being disproportionately affected by the decision, something which will happen continuously throughout 2022.

19

10

Remember Partygate? The Met Police decided on this day to contact the government about all of the rules that they broke so they could have a knees-up in the Downing Street garden the year previous. PM-of-the-moment Boris Johnson declines to say whether he attended.

12 BoJo confirms during Prime Minister’s Questions that he did, in fact, attend said booze up, having convinced absolutely no-one for the last two days that he hadn’t been there. He offers his “heartfelt” apologies. Yeah. Thanks for that.

FEBRUARY

Prime Minister apologises to parliament after getting a fixed penalty notice, becoming the first sitting PM in history to have been found to have broken the law, saying he didn’t realise he’d broken the rules, despite getting on the TV every other night for a year to remind the rest of us about the rules.

MAY

14

The UK comes second in Eurovision. Not only did we finish with more than nil points as we usually do, we came second. The UK’s entry Sam Ryder performed a miracle.

24

The Elizabeth Line opens in London. Campaigning from disabled activists, including Transport for All, ensured that all 41 stations along the line have step-free access.

24

06

Queen Elizabeth becomes the first British monarch to celebrate 70 years on the throne, with Platinum Jubilee celebrations taking place later in the year, and spawning the truly awful term “Platty Joobs”.

24 After weeks of speculation, Russia illegally invades Ukraine, causing the displacement of millions and the loss of thousands of lives.

Partygate update: the BBC’s Panorama shows that during the Downing Street party, people sat on each other’s laps and mocked people who were anxious about catching COVID. Great!

08 Queen Elizabeth II passes away at 96, and the nation entered a period of mourning to reflect on their loss.

JUNE

02

The UK celebrates the Platinum Jubilee with street parties, and official events at the Palace. The Queen announces she won’t attend the Service of Thanksgiving as she was in discomfort during the Red Arrows’ flypast, adding to concerns around her health.

21 Strike action begins on the railways in order to secure what their union calls safety-critical roles across the network and raise wages in line with inflation.

JULY

05 Strap in, because this is where it all goes mega pear-shaped for the government. The crisis begins with Sajid Javid, Rishi Sunak, among countless others, resign from their posts over the next day or two, citing concerns with the government.

07 Boris Johnson announces his resignation as the leader of the Conservative Party, prompting a leadership contest to begin.

19 Heatwaves begin across the UK, with temperatures going above 40°C for the first time, which should

23 Truss’ Chancellor of the Exchequer Kwasi Kwarteng delivers an emergency budget to parliament that is so poorly received it tanks the pound, is criticised by the International Monetary Fund, and results in the Bank of England purchasing £65 billion of government bonds. Everything was going just… amazing. Spectacular.

OCTOBER

20 Liz Truss steps down as prime minister after 45 days, securing her place as the answer to the pub quiz question “which prime minister served for the shortest length of time” for the foreseeable future.

24 Rishi Sunak becomes the next leader of the Conservatives after Penny Mordaunt drops out and Boris Johnson frightens everyone by saying he fancies another shot at being PM.

NOVEMBER

The entire country temporarily unites as former health secretary Matt Hancock joins I’m A Celebrity in the vain hope they might be able to get him to eat a kangaroo anus as

01

AWelcoming ENVIRONMENT

Iwas becoming increasingly frustrated, whenever I followed one of my guide dog owner clients into a shop the fact that the staff member didn’t know how to communicate with them always surprised me. It wasn’t until a few years later that I got tired of being shocked and angry and started looking at the reasons why, even when they later told me they had received training, that none of the most obvious procedures for communication were being followed.

The discrimination encountered was mostly not introducing themselves, or distracting the dog, or using language like “it’s over there” or taking my client’s arm instead of offering theirs. However, at the end of the day I knew that these instances were tiring for my client and often embarrassing for the staff member when correct procedures were pointed out.

Of course, you don’t have to look far on your social media news feed to find much more serious discrimination where a person with an assistance dog has been refused access or even been thrown out of a venue completely.

By 2015 I’d had enough but I’d also had an idea.

I’d introduced “tech talks” in all of my classes. Not because it was part of the Guide Dogs training curriculum, but more that increasingly folks were turning up to train with their new guide dogs and would invariably end up talking about and demonstrating

their new tech gadgets to other class members. From voice-activated TVs to digital banking, it seemed the world was changing and nowhere more than through the use of smartphones, and particularly the iPhone.

The more I thought about it the more I started to wonder if I could link my client to the venue they were visiting via their smartphone and use this connection to allow them to specify their needs and trigger awareness training before they arrived. This idea grew and in 2019 after lots of testing WelcoMe was launched.

WelcoMe is a free-to-use service which connects disabled people to the venues they wish to visit. A pre-populated profile triggers awareness training with information and links provided by charities and organisations representing disabilities and conditions the visitor thinks

staff could have more awareness of. With over 30 conditions on the platform including the option for non-disclosure, it’s a solution available to everyone with visible or hidden conditions.

The service is paid for by each venue through a subscription which allows them to list themselves on the platform and go on to offer the highest standard of customer service and staff disability awareness possible.

Key for WelcoMe, considering my background, is the empowerment of the individual, so there is very much a focus on the disabled person being in control of each interaction, sharing as much or as little information as they would like prior to a visit. There is also the option for users to request new venue locations expanding the service to destinations they feel could improve the service they offer.

HOW WelcoME WORKS

Users of the service can either download our app and set up a profile or complete a profile online at any of the venues using

the service. Once completed the disabled visitor can then plan a visit to the venue. Within the service, users can check on access and the level of service provision available as well as check any access reviews from a list of wellknown review sites such as, Euan’s Guide, AccessRating, AccessEarth, SociAbility, Snowball and others. The visitor can also state exactly what they wish to achieve on arrival or mention anything specific they feel a staff member should know in regards to their access or communication needs. On arrival the visitor can press an “arrival” button within the app which lets

Gavin Neate is the founder of the WelcoMe app, a service that improves customer service and access for disabled people at venues throughout the UK

the staff member know they have arrived and then within 24 hours of a visit are given the option to fill in a review of the service they received.

For every access refusal and every instance of discrimination, poor staff training, lack of awareness or a lack of respect towards disabled people is to blame. With WelcoMe we aim to empower disabled people to leave home feeling more comfortable visiting venues they know and venues they don’t, confident that they will be met by disability confident staff prepared to provide the very best service possible.

You can find out more about WelcoMe and create your own profile at: Wel-co.Me

A MINDFUL CHRISTMAS

BY KATIE CAMPBELL

The festive season comes but once a year, and sometimes, that feels like a bit too much

Christmas, Hanukkah, Kwanzaa, and the New Year. Regardless of what it is you celebrate throughout December and early January, it’s such a vibrant and exciting time of the year; family travel from all over the country - sometimes even the world - to get together for food and festivities, and it can be wonderful. It can also be expensive, deeply stressful, and emotionally taxing. Just sometimes, though.

The festive period is a lot, physically, mentally, and emotionally. For some people, it can be a bit too

much to deal with - not just the days of celebration themselves, but the lead-up to the day can feel so overwhelming. Buying gifts, travelling, making plans, the changes to your surroundings, and the increased business of seemingly every location in your general vicinity can be very stressful. Add to this the fact that, as much as some people would like to think, COVID is still a very real and prevalent issue, there are additional stressors on people that can also very much take their toll. This isn’t even an extensive list of reasons the festive period might be a stressor

for you - let’s not get started on the complexities of interfamily conflict or we’ll never finish - but there is a real pressure on us to enjoy the festive season, and to appear to everyone around us like we’re having a holly jolly festive season.

The festive season might be about reconnecting with family and friends, but you also need to remember to take time for yourself. With that in mind, how can you go about having a more mindful festive season, which will hopefully make it more enjoyable for you!

TAKE TIME FOR YOURSELF

Family dinners, people staying over, nights out, markets, work dos… it’s a lot of socialising. Socialising is something that takes an awful lot of energy for some people, and it can feel phenomenally draining to

spend over a full month being very social. For a start, it’s totally fine to say no to things. No is, as they say, a full sentence, that does not require additional reasoning. If you don’t have the spoons, the energy, the means or the motive to go to something, you don’t have to go. Saying no can make some people feel guilty, but there are few benefits to spreading yourself too thin. That’s not to say we should shirk our responsibilities of course, but making time for yourself is, as you likely well know, important for recharging.

Do something for yourself as often as you need: whether that’s snuggling up under the fairy lights to watch a Christmas movie, or saying no to a night out to do whatever you need to recharge your battery. Take time to do whatever it is that you need to do in order to ensure you get to enjoy the festive season at your own pace.

DON’T AIM FOR PERFECT

The saying “perfect is the enemy of good” was made for the festive season. It is, of course, a prime opportunity to make memories, especially if you have very young or older family and friends, with whom we feel a lot of pressure to make these special memories. Feeling obligated to create a perfect environment to celebrate the season can be so stressful, which can be

compounded if you find yourself as the host or organiser of an event.

Your best this year is enough. It’s more than enough, especially considering the year we’ve all had. It’s more important that you get to enjoy the traditional eating, drinking, and being merry (if you want to!) than making everything perfect.

ACCEPT NEGATIVE FEELINGS

It’s totally fine to be overwhelmed by the festive season; as we might have mentioned, it is very overwhelming. Try not to feel bad if you feel stressed, guilty, or in too deep. This hasn’t been an easy year, and for some of us, it might be a difficult festive season. You don’t have to enjoy this festive season - or any festive season, honestly - but you also don’t need to shy away from being stressed out by it.

There are lots of reasons to feel negativity this festive season, and there are people and organisations which might be able to help you if you feel like you need support. The charity Mind (mind.org.uk) has excellent resources for anyone who is experiencing loneliness, stress, or more specific worries throughout the season - including worries about the rising cost of living, and relationshipbased concerns - and can help direct you to more specific resources.

THAT

JOB Dream GET

BY JANE HATTON

SETTING CAREER GOALS

SMART goals are specific, measurable, achievable, relevant, and time-bound. Setting SMART goals allows you to clarify and focus your career ideas and job search efforts using your time and resources efficiently and effectively. Use this SMART formula to help you get clear on your career goals or use it to support your job search journey to help you see improvements and keep on track.

Here, we explore each term more closely, with an example of how it might work in practice.

SPECIFIC

What do I want to achieve? Be precise, focused - identify the career goal and resources I will use.

Example:

By the end of the year, I will build my project management skills by seeking out work experiences where I will develop in specific areas of delegation, collaboration, and strategic planning. I will seek out a mentor and build relationships with my organisation to support my growth as a project manager leader

To do:

Arrange a meeting with my manager and HR - within two weeks.

Contact Evenbreak to organise career coaching - end of month.

Identify three potential mentors or leaders within the organisation, request meetings and invite the best fit (seek approval from management/ HR) - deadline end of month.

MEASURABLE

How will I know the goal is achieved? How much change needs to happen? What actions will I take? What

metrics/milestones do I need to meet?

Example:

I need to seek out a meeting with HR as well as my manager to support this goal. When I have had practical work experience backed up with feedback and delivered three results across the business, I will be able to evidence my achievements. This includes gaining knowledge, building my collaborations, delegation, and planning skills.

To do:

Set up a feedback system for collaborations: management, career coach and mentor by end of week.

Agree with HR participation on mentor programme and/or a potential secondment.

Explore the possibility of a mentor outside my work, explore LinkedIn and explore courses via work and MOOCS.

ACHIEVABLE

Is my career goal realistic and attainable? Can I commit to this goal? Will the actions bring me results?

Example:

I can commit to these goals by breaking down the projects and into manageable tasks. I have identified three projects that allow me to move into action and develop my skills (delegation, collaboration, and strategic planning). Two projects have been agreed and a plan designed. I will also reach out to my manager in my appraisal to seek support and endorsement, start secondment/mentoring programmeset deadline.

RELEVANT

Why is this goal worthwhile? Is this relevant to my values and long-term objectives? Am I willing to commit?

Would a delay prevent me from progressing?

Example: Within the next year, this strategy will enable me to showcase my achievements to support my longerterm goal of moving into a project management role. I will develop skills, make connections, complete a PM course, reach my ambition to move into a project management role.

TIME-BOUND

What is the timeline for reaching my career goal? How long do I want to commit to this goal? Write down a target date - use metrics. When will I review and seek feed-back?

Example:

By the end of 2023 I will have:

Identified three projects through the support of my manager, mentor and colleagues.

Had regular monthly meetings to check in with my manager to ensure I am reaching my goals.

Scheduled a monthly career coaching session with an Evenbreak Career Coach who will help me to identify ways to build these skills both in and outside my world of work and to help with a job search strategy.

Have a go with this, using your own goals and priorities, and see if it gives your job search some useful structure.

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

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.