MAGAZINE TOURETTE SYNDROME
C OOKIN G
USE YOUR VOICE
Dispelling the myths around this neurological condition
Accessible tips, advice and recipes to perfect your culinary skills
The importance of sharing your story to affect change
PPA Scotland Specialist Magazine of the Year 2020
Welcome FEB/MAR 2021
his issue has developed a strong theme around cooking. As the weather keeps us indoors a bit more this time round, many of us having been seeking solitude in the kitchen. The therapeutic art of good old fashioned cooking has been our saviour on those rainy cold days, whipping up some tasty comfort food to feed our appetites as well as our souls. There can be challenges to getting
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into the kitchen though, and Euan’s Guide have some great tips from their followers on making the experience more accessible, read all about their advice on page 24. We have also pulled together an essential guide of cooking utensils that will make your job a whole lot easier, you can find these on page 26. Ian Taverner has created a cookbook called Cookfulness that is designed specifically to help people living with chronic illness to create healthy, tasty meals, we caught up with Ian to find out more on page 18. In our Kids’ Corner we bring you some pancake inspiration to get your kids into the kitchen too. This issue also looks at the history of Black American Sign Language, the misconceptions around Tourette syndrome, the importance of using your voice to tell your story and our wonderful columnists share their views on life. Until next time, stay safe.
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PosAbility Magazine is published by 2A Publishing Limited. The views expressed in PosAbility Magazine are not necessarily the views of the editor or the publisher. Reproduction in part or in whole is strictly prohibited without the explicit written consent of the publisher. Copyright 2021 ©2A Publishing Limited. All Rights Reserved. ISSN 2049-2251
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MAGAZINE TOURETTE SYNDROME
CO O K I NG
USE YOUR VOICE
Dispelling the myths around this neurological condition
Accessible tips, advice and recipes to perfect your culinary skills
The importance of sharing your story to affect change
Follow us on Instagram @ posabilitymagazine
To find out more about subscribing to PosAbility Magazine turn to p66
PPA Scotland Specialist Magazine of the Year 2020
Sam Renke discusses the importance of boundaries with your personal assistant
15 IN THE KNOW Everything you need to know about getting the COVID-19 vaccine
18 COOKFULNESS Ian Taverner has launched a cookbook for people living with chronic illness
20 FRUGAL FEASTS Some inspiration for cooking healthy meals on a budget
13 CREATING BOUNDARIES
Keeping you updated on news and stories from around the world
32 THE PERFECT DRESS
FEB/MAR 2021 | ISSUE 59
Stephanie Quintrell shares her experience of finding the perfect wedding dress
34 HOT STUFF Showcasing the latest must-have products on the market
38 VARIATIONS ON SIGNING We explore the history of Black American Sign Language (BASL)
41 ANGELMAN SYNDROME Raising awareness and understanding of Angelman syndrome
44 ACCESSING BRITAIN’S RAILWAYS An overview of the accessibility of our rail network
46 THE TRUTH ABOUT TOURETTE’S 23 LOVE IN ITSELF
Sarah Wall dispels the myths around Tourette syndrome
Mik Scarlet contemplates finding love in a COVID era
49 USE YOUR VOICE 24 CREATIVE COOKING Euan’s Guide offer some great advice for making kitchen tasks more accessible
26 BAKE OFF An essential guide to perfecting your bakes in the kitchen
29 MAKING MUSIC Discover the record label dedicated to musicians living with a learning disability
31 COMPETITION We have five Fidgetbum blankets to give away!
Caroline Butterwick explores how you can share your own story
53 KIDS’ CORNER Pancake Day recipes for some fun family time, innovative kids products, Emily Nicole Roberts shares her views and Dan White talks about the families that have been left behind
62 THE ACCESSFUL FOUNDATION Meet the new organisation that has launched to help disabled entrepreneurs
65 GET THAT DREAM JOB Jane Hatton urges you to use your personality to land your dream job
FOR YOUR INFORMATION News and stories from around the world
COLLEGE TO DELIVER ELITE WHEELCHAIR BASKETBALL PROGRAMME
ueen Alexandra College has launched a groundbreaking new programme that aims to develop the skills of young sports people aged between 16 and 24 who use a wheelchair in high-level wheelchair basketball. The programme is led by the college, in collaboration with the University of Worcester and The Albion Foundation, and will give students the opportunity to be coached by experienced and qualified basketball association and
wheelchair basketball coaches, in addition to training at the University of Worcester Arena, which was previously the training base for the GB men’s and women’s basketball teams. Bev Jessop, principal and chief executive at Queen Alexandra College, said: “QAC is really pleased to be collaborating on this exciting new initiative with The Albion Foundation and University of Worcester. We look forward to the opportunities it will give young people to develop their passion for wheelchair basketball and progress as a player.” If you would like more information on how to get involved in this exciting opportunity, visit the website at: qac. ac.uk/coursecategories/wheelchairbasketball-academy/396.htm. Please note that students will not be engaging in face-to-face sporting activities until it is deemed safe to do so by the relevant governing bodies.
LAW FIRM LAUNCH DESIGN INNOVATION COMPETITION
aw firm Bolt Burdon Kemp has launched a new design competition, Design the Change, aimed at improving the lives of people who live with spinal cord injuries. The firm, which specialises in representing and acting for people who have experienced spinal cord injury, are asking students - individually or in teams of four - to create something life-changing for people living with spinal cord injuries, and are offering the winner a £3000 prize, along with £2000 for their university, as well as the opportunity to experience a week’s placement at charity Cerebra’s research centre. The idea can be anything, from a simple redesign of an everyday object, to something complex like a completely new appliance. Victoria Oliver, head of the spinal injury team at Bolt Burdon Kemp, said: “We are very excited to be launching our Design the Change competition. We want to see the world made fully accessible and we think design plays an important role in making that happen. “In my role as a solicitor in the Spinal Injury team I have seen first-hand the difference well designed products can make to the life of someone with a spinal cord injury. The right product can take a previously challenging or impossible task and turn it back into a simple everyday activity that can be done without planning or assistance. I cannot wait to see the designs the students come up with.” Entries for the competition are open now, and will close on 23 April 2021. For more information, visit boltburdonkemp.co.uk.
YOUNG INVENTORS INNOVATE FOR DISABLED PEOPLE
he Young Innovator Awards announced five winners who are looking to make the world a more inclusive and accessible place for disabled people, supported by Innovate UK and The Prince’s Trust. Award winner Michelle Best from Gainsborough, Lincolnshire, founded Blossom & Best after being inspired by her daughter’s struggles with incontinence. She now designs and produces handmade clothing for children and teenagers living with disabilities or medical conditions. Michelle said: “My daughter Yasmin suffers from urinary and faecal incontinence. I understand the challenges and pain faced by parents of children with disabilities. They struggle to find suitable clothes in mainstream markets. I applied for the programme to help take my business to the next level and start manufacturing my products.” Other winners include Kate Walker from Loughborough, who used her dissertation as an opportunity to produce affordable prosthetics which she has brought to market as ExpHand; Pete Barr from London who created the visual arts tool Enayball to allow anyone who lives with a physical disability to draw, paint and create independently; Diana Kviatkovskaja from Bristol, who founded Chisel Robotics, and creates stateof-the-art wearable devices which can be utilised with prosthetics; and disability activist Lucy Watts from Thundersley, Essex, who developed an e-learning platform to help empower disabled, unwell, or caring people, utilising her own experience of living with illness, disability, and care. Emily Nott, head of equality, diversity and inclusion at Innovate UK said: “With 2020 proving to be an incredibly difficult year, maintaining our focus on Young Innovators was a priority for Innovate UK since finding the great entrepreneurial minds of the future is more important than ever. We can’t wait to see what they achieve this year.”
MATTEL LAUNCH EVEN MORE INCLUSIVE BARBIES
attel have announced a few new additions to the classic Barbie Fashionista line-up, including a Ken doll who uses a wheelchair, and a Barbie who lives with vitiligo. These new dolls will join the more than 170 others in the Fashionista range which the company says showcases “a multi-dimensional view of beauty.” Mattel introduced the Fashionistas line in 2015, with the aim of launching dolls with a variety of skin tones, hair colours and textures, and body types so that young customers were able to find dolls that “speak to them,” and better represent them in their play. Previous additions to the Fashionista brand include a doll with no hair, a Barbie who uses a wheelchair, and Barbies using prosthesis. Lisa McKnight, senior vice president and global head of Barbie and Dolls at Mattel, said: “As Barbie accelerates to new heights as the number one global toy property and holds as the number one fashion doll property, the message is clear that the Barbie brand is more relevant than ever. “As the most diverse fashion doll line on the market, we take great responsibility in better reflecting the world around us and know there are many positive benefits to exposing children to dolls with different skin tones, hair types, abilities and more. “We are proud to offer an even wider range of diverse choices with the latest Barbie Fashionistas line so more kids see themselves reflected in our doll line.”
TRIBUTES PAID TO BRITISH FENCING CHAMPION
he world of wheelchair fencing paid tribute last month to five-time Paralympian David Heaton, who passed away after tragically losing an 18 month long battle with cancer. ParalympicsGB’s Caz Walton, said: “David was a gifted athlete playing league basketball for his local team, but it was as a fencer that he really made his mark. His debut as an 18-year-old, saw him compete at the Paralympic Games in Barcelona 1992 winning a bronze medal as part of the sabre team.
“A hugely talented fencer, he represented Great Britain at five Paralympic Games and numerous European and World Championships. He was a popular figure internationally and a great ambassador for his country. David retired from international sport after London 2012 but continued to put time and effort back into the sport that he loved.” Pal Szekeres, International Wheelchair and Amputee Sports Federation chairperson said: “He was a friendly figure on the circuit for many years who helped inspire the next generation of athletes at home and abroad. It is no coincidence that Great Britain has some of the world’s top wheelchair fencers. They follow directly in his footsteps and many more will do so in the years to come. My thoughts, and that of the IWAS Wheelchair Fencing Executive Committee and wider community, are with his wife, family and friends at this difficult time.”
DISABLED REPRESENTATION ON TV “URGENT” ISSUE
he Creative Diversity Network have published their annual Diamond report on diversity in the UK television industry, and found - unsurprisingly - a distinct lack of disabled talent both on and off screen. The report features the contributions of more than 740,000 people working in the broadcasting sector, and noted that while there have been drives to make sure that disabled people are more represented in broadcast, they’re still underrepresented both on-screen and off-screen when the percentage of disabled people in the UK’s workforce is compared to that of the broadcast sector: while the estimate of disabled people within the national workforce is estimated to be at around 17%, only 5.8% of contributions off-screen and 8.2% of contributions on-screen were made by disabled people. It also notes that BAME and disabled people are less likely to be contributing in the roles of writer or director: only 3.5% and 4.9% of writers and directors were people living with
disabilities respectively, while 6.5% of writers and 8.4% of directors are BAME. Paul Moore, Creative Diversity Network chair, said: “While charting areas of progress it also shines an unforgiving light on the scale of inequality to be addressed. Diamond — the Fourth Cut supports the need for the continuing commitment of the industry to double disability and also makes the case that much more needs to be done to improve the representation of all groups behind the camera. The massive imbalances in some of our professional and technical roles also need to be addressed. “All of us in the industry need it to inspire, encourage and support real and sustainable change to ensure the content on our screens, the people making it and the industry’s decision makers all better reflect our society and where the opportunity to create, write, produce or direct is equal irrespective of race, gender, disability, age or social background.”
Laura Spoonie @LauraSpoonie “I’m Fine” and chronic illness “I’m Fine” are not the same thing.
Hollie-Anne Brooks @HollieAnneB #DisabilityTwitterTaughtMe how to be me. When I became disabled, I felt lost. I always say you never get a leaflet from the hospital on what to do now you’re disabled, disability twitter taught me everything
Lindsay @Rollinintheseat One of the perks of using a wheelchair is that I’ve never slipped on a banana peel.
teona | crip gossip girl @tee_spoonie #DisabilityTwitterTaughtMe that it’s okay for me to push back against people trying to force positivity on me. It’s also okay to love my disabled body no matter how much society wants us to treat ourselves with shame.
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Available on selected Dealer stock only. Please contact a participating Ford dealer for more information. Model shown is a Focus ST-Line Edition, 5 Door, 1.5L Ford EcoBlue 120PS Manual, Diesel. Fuel economy mpg (l/100km) (Combined): 65.7 (4.3). CO2 emissions: 114g/km.
Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted, variations in weather, driving styles and vehicle load. £445 Advance Payment available only on Focus ST-Line Edition 5 Door 1.5L Ford EcoBlue 120PS Diesel Manual. This programme is subject to the standard conditions of the Motability Scheme hire agreement. Full written details and quotations available on request from a Ford Authorised participating Dealer of Motability Operations Limited. Motability Scheme vehicles are leased to customers by Motability Operations. Motability Operations Limited is authorised and regulated by the Financial Conduct Authority under reference number 735390. To qualify, you must be in receipt of the Higher Rate Mobility Component of Disability Living Allowance (DLA), the Enhanced Rate Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP) and applications must be made with participating dealers between 1st January and 31st March 2021. Prices are correct at time of print, are subject to availability and may change. For more information and most up-to-date data, please see the price list at www.ford.co.uk/motability
deserve respect and dignity, if they don’t like it then they need to find a different profession, that’s not your responsibility.
Set boundaries. I often wanted my PA to think I was cool and wanted to be liked so I didn’t say anything if they turned up late or used their mobile during our hours together. Boundaries are key to a successful and harmonious relationship. I’d always get your PA to send you a text me when they are en route this marks the start of the working day and sets the tone for the day ahead I find, and most certainly if they are going to be late. You can politely say that they can use their phone if, for example, they have children and need to be reached in an emergency, but other than that say you’d rather they didn’t and openly explain that your time with them is limited as care packages never meet our actual needs.
Our favourite teacher-turnedactress, Sam Renke, brings you her take on life and the colourful experiences it throws her way.
e were all caught out by the dramatic turn of events 2020 threw our way. Many of us did not or could not cope with how quickly things changed. Lockdowns, tier systems, rules and regulations, no Christmas, then a kind of Christmas! We were blindsided and thrown curve balls left, right and centre. I’ve often thought that having a disability has somewhat prepared me for change. Broken bones, wheelchairs breaking down, lifts and accessible bathrooms out of service, or my favourite “yes we are fully accessible”, only to arrive and still be confronted with two huge steps at the entrance. All of which really don’t phase me as much as perhaps they ought to: I’ve learned over the years to navigate around these curveballs, yet one that always floors me and fills me with dread is having to employ a new personal assistant (PA). So much so I often find myself repeatedly asking my PA, “you are still happy working for me right?”, so scared she will leave me and I will have to go through the daunting process once more.
Throughout my adult life I’ve probably had around eight or nine PAs, some agency workers and some private, and I’ve learned a lot with each and every one. Some have taken advantage of my kindness, some have made me feel like I should be grateful that they are assisting me, some have tried to get money from me and others I’ve perhaps allowed to become too friendly, blurring the working relationship. I’ve been too lenient with some and too cold with others. It’s a minefield, and those of us who go through the process don’t often get the support we need or deserve. With this I wanted to share some of my insight and perhaps wisdom on employing a PA, particularly if it’s your first rodeo. First thing’s first, you have to tell yourself that your PA isn’t doing you a favour, you are their boss and you are offering them gainful employment, something of a luxury for many people. I appreciate PAs often receive minimum wage, but this doesn’t mean they have to do a half-hearted job, remember no one is forcing them to enter the care profession and you
Most of the time I do not need intimate care but when I have a fracture I most certainly do, this means I need to feel completely at ease with my PA. It’s absolutely acceptable to form a strong bond and even friendship with your PA which makes it a much healthier relationship, especially as that person will see you at your best and your worst, but by implementing boundaries like those I’ve suggested will allow you to still feel in control and have autonomy. The times I haven’t set boundaries I found it incredibly difficult to call out behaviour or practice I was not happy with. Remember they are not your parent and you are not a child, if you want to eat ice-cream all day in bed or go into a sex shop to buy some nipple tassels that’s your prerogative. Never allow your PA to dictate your life and if they do cross that line, simply remind them that a contract can be terminated because there will always be PAs that would jump at the chance to work with you. They are there to assist you in any capacity and enable you to be independent and strong. Stick to your boundaries.
In the Know BY KATIE CAMPBELL
More people are becoming eligible to receive the COVID-19 vaccine, so here’s what to expect and what you should know
WHAT WILL HAPPEN WHEN I GET THE VACCINE?
getting, or voice any concerns you have.
First, you’ll be contacted via letter, phone call or text to let you know that you’re able to get the vaccine, and you’ll be invited to attend your vaccination. There are multiple places you can get it, including hospitals, vaccination centres, GPs, and pharmacies. You might get multiple invitations - this means you can choose the one that most appropriately meets your needs.
The vaccine is an intramuscular injection that’s received in the upper arm. That’s because if the vaccine is injected into your muscles, it’s able to move quicker throughout your body and get to work faster. After this, you might be asked to sit for 15 minutes to ensure you don’t have an allergic reaction, but to ensure that if you do, you’re surrounded by trained medical professionals who know best how to help you.
When you go to get vaccinated, you might need to bring your appointment card, or proof of identity. This is just to make sure the right person who requires a vaccine is getting it. A member of staff will check that you don’t have symptoms of COVID-19, and you’ll be asked to give informed consent to your vaccination, and be allowed to ask questions. Don’t be afraid to ask which vaccine you’re
Once you’ve had your first dose of the vaccine, you’ll be given a leaflet letting you know what to expect after your vaccination. You’ll be given an appointment card, and an appointment for your second dose, which should be within 12 weeks of your first. It’s important to make sure that you’re still following the government guidelines, even after you’ve been vaccinated.
HOW DOES THE VACCINE WORK? At time of writing, there are currently two different COVID-19 vaccines that are approved for use in the UK and are being deployed - it should be noted that a third, the Modern vaccine, has been approved, but isn’t currently being administered by the government. The two vaccines currently being administered in the UK are both of different types: the Pfizer-BioNTech vaccine is an mRNA vaccine, while Oxford-AstraZeneca vaccine is a viral vector vaccine. This might sound pretty complicated, but it’s not; they just use two different but similar methods to teach your body’s immune system how to produce antibodies. In the Oxford-AstraZeneca vaccine, a little fragment of the spikes that you can see all over the COVID-19 virus was packaged up inside something called an adenovirus - one of the viruses that causes the common cold, but this one doesn’t affect humans. The body’s immune system sees the adenovirus, and learns how to make antibodies which can fight COVID-19 by recognising the spike protein that was inside the adenovirus. The Pfizer-BioNTech vaccine similarly teaches the body to create antibodies using COVID-19’s spikes. It injects a little piece of messenger ribonucleic acid, or mRNA, into the body. This mRNA contains a small amount of code, which teaches cells in your body how to make the spikes that are normally found on the outside of the COVID-19 virus. Your cells make some spikes, which teaches the immune system how to create antibodies to fight COVID-19, should it enter your body. It is worth noting that in the case of both vaccines that you can’t get COVID-19 from the vaccine itself; the spikes that are either introduced or created in the body don’t have the ability to teach your cells to make more of the virus. The spike proteins are the part of the COVID-19 virus that attach to your cells, and so are, relatively speaking, not harmful to our bodies.
WILL I EXPERIENCE SIDE EFFECTS?
We’re not doctors, let’s make that clear. We can’t tell you what will happen for certain when you get your COVID-19 vaccination, but there is a possibility that you could experience very mild side effects, as you can do when you receive any vaccination. The most common side effects seem to be pain at the site of the injection, tiredness, headache, muscle pain, chills, joint pain and fever. You might also see inflammation or redness at the site of injection, and feel a bit of nausea. There are more uncommon side effects that affect one in 100 people, including enlarged lymph nodes and feeling unwell; and temporary drooping on one side of the face, which is a rare side effect that affects one in 1000 people. Some people may experience an allergic reaction, but there are no available estimates from the current data to suggest how many people may experience this. However, your GP or a medical professional may not recommend you take the COVID-19 vaccine if you have had a reaction to a previous vaccine.
Forget 2020. Plug into the future.
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Motability Stock Available Visit mitsubishi-motors.co.uk to find your nearest dealer.
Fuel economy and CO₂ results for the Mitsubishi Outlander PHEV Dynamic / MPG (l/100km) (weighted combined): 139.7 (2.0) /Electric energy consumption (weighted combined): 3.68 miles/kWh / CO₂ emissions (weighted): 46 g/km / Equivalent all-electric range: 28 miles The Motability Contract Hire Scheme is administered by Motability Operations PLC (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London, SE1 9HB. To qualify you must be in receipt of the Higher Rate Mobility Component of the Disability Living Allowance, the Enhanced Rate of the Mobility Component of the Personal Independence Payment, War Pensioners’ Mobility Supplement or the Armed Forces Independence Payment which will be taken in lieu of the four weekly rental. Subject to availability, whilst stocks last and may be amended or withdrawn at any time. Terms and Conditions apply. Please ask the dealer for full details. Rentals valid for applications placed between 1st January and 31st March 2021. These figures were obtained using a combination of battery power and fuel. The Mitsubishi Outlander PHEV is a plug-in hybrid vehicle requiring mains electricity for charging. Figures shown are for comparability purposes. Only compare fuel consumption, CO₂ and electric range figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including, accessories fitted (postregistration), variations in weather, driving styles and vehicle load.
Cookfulness BY ROSALIND TULLOCH
We spoke to Ian Taverner about his new book Cookfulness, a therapeutic approach to cooking for people living with chronic illness and pain
an Taverner has created a unique cookbook aimed at helping people living with chronic health conditions get back into the kitchen.
In his mid-thirties, Ian began to experience chronic pain, anxiety and depression, and was subsequently diagnosed with chronic fibromyalgia and arthritis. He attended an exclusive programme at the NHS National Centre for Pain in Bath, and this programme gave him hope and drive to find a way to live with his condition. This course is also the reason Ian began cooking again and he it ignited a passion in him to get back into the kitchen to cook for his family. Seeing his family enjoying the food he made, cooking with his children and being creative in the kitchen gave him back his family and gave him a renewed purpose in his life. He spoke to PosAbility about the inspiration behind his book: “I’ve always had a passion for cooking but had lost the ability, the motivation and the inspiration since being diagnosed with chronic fibromyalgia, arthritis, depression and anxiety. “At the end of a very long and painful road, I got to attend the NHS National Centre for Pain Services in Bath in 2019 on a programme to try and help cope with daily living that little bit better. It was here that I realised I needed to reattach myself to life, accept and own my illnesses and reignite. Cooking was my way back.
“It most definitely wasn’t all plain sailing though as I still had no natural creativity and needed cookbooks to help me with recipes, ingredients, processes, but none I had or could find catered for my brain fog, my pain and my anxiety. “The NHS pain centre had also inspired me to want to help others in the same position in whatever way I could. I decided to combine the two and wrote Cookfulness! Specially designed to be as simple, consistent, fear-free and accessible as possible. “The power of being able to cook, no matter what level of bad you are feeling, is immense and that’s what I wanted to try and share.”
The book itself has a unique content layout to help make the prospect of cooking less daunting and more enjoyable as an experience. It is different to your usual cookbooks and there are no images of final dishes, removing the pressure some people may feel on how the dish is supposed to turn out. Ian is ceoliac, so all the recipes are aligned to this diet, meaning no wheat or gluten, but you can add in gluten or wheat products where appropriate if you wish to do so. The recipes are designed for the whole family to enjoy and are thoughtfully created to be as simple as possible, ensuring anyone can cook good, nutritional, home-cooked meals. The book includes great tips for helping people to conserve energy when needed. Ian recommends keeping chopped frozen vegetables in the freezer for the days when you are low on energy or experiencing pain in your hands. He has also created the ‘Give Yourself Time’ section for each recipe, for when you are experiencing a ‘bad day’, this allows you to still cook at your own pace.
“I’m genuinely blown away by the reaction and thank everyone from the bottom of my heart for their incredible support. I started Cookfulness hoping that if I could help one person living with chronic illness, I would be overjoyed. Now it’s going so far and wide, way beyond my expectations, I’m so, so happy, but still waiting for someone to do a ‘Dallas’ on me and say it was all a dream!”
When asked about future plans for other cookbooks Ian explained that it has been difficult as he is self-published and having a literary agent or a publisher on board would make a big difference, but this will not stop him forging ahead with some big ideas: “There are so many more Cookfulness books I want to write, for example for children living with pain, anxiety and depression, for families to help drive and guide conversations on chronic illnesses, comfort food that is healthy, for entertaining and socialising - two words that strike fear into people in my community! “I’d also love to have Cookfulness kitchen utensils, Cookfulness kitchen support gadgets, Cookfulness cookware and tableware, all designed specifically to help people achieve in the kitchen. “I’m dreaming big of course, but I genuinely believe its achievable and, more importantly, desperately needed to help a huge group of people to improve their quality of life just that little bit more, but that little bit really can make a huge difference.” You can purchase Cookfulness on Amazon or order it from all good book stores and part of the proceeds will be going to the NHS Bath Centre for Pain Services. You can follow Ian on Instagram and Twitter @Cookfulness.
Each recipe also has a list of all the utensils you will need to make the dish so you can get everything out before you start, and there is a difficulty rating and hints and tips for each dish too. The key important elements are highlighted throughout each recipe to keep you on track even on days where brain fog seems insurmountable. The book has had a great reaction and has received a lot of coverage so far in the media, something Ian is hugely proud of: “To be honest, I still can’t quite get my head around it! What has been so incredible has been the reaction across so-called “traditional” boundaries, so from PosAbility to BBC Good Food magazine, The OT Magazine to Vegpower, FMA UK to newspapers in my native Isle of Man and current home of the New Forest. “Hearing from people living with chronic illness and their families is so emotional. Hearing how they are cooking together for the first time in years, how they are enjoying cooking for the first time in years, and how they are actually looking forward to cooking again, is truly magical. “I’ve also had feedback from cancer patients, especially post treatment, and menopausal women who experience brain fog and muscle and joint pain, who find the pace of the book ideal.
BY ROSALIND TULLOCH
In the current climate we are all trying to look after the pennies, remain healthy, be environmentally conscious, keep positive and look after our mental health. It’s a lot to be dealing with right now and it can be hard to come up with healthy recipes on a budget, so we have come up with a few filling, delicious meals that celebrate humble ingredients that will keep you healthy and full.
BUTTERNUT SQUASH SOUP This comforting and delicious soup is simple to make and wonderful to eat. The butternut squash can take a bit of effort to peel and chop so ensure you have a good knife and a safe work space to use. Butternut squash is a great source of fibre and is packed with antioxidants and vitamins. It’s a great soup to make plenty of and store in the freezer to defrost as needed.
INGREDIENTS 1 large butternut squash (approx. 1kg), chopped 2 tbsp olive oil 1 tbsp butter 2 onions, diced 2 garlic cloves, chopped 850ml vegetable stock 4 tbsp crème fraiche Red chilli (optional)
Heat the oven to 200C/180C fan/gas 6.
Place in the oven and roast for 30 mins or until golden brown, a bit of charring on the edges is great for taste so don’t worry if you see burnt bits.
Add a tablespoon of butter and a tablespoon oil to a large pan and melt over a low heat. Dice the onion and roughly chop the garlic and add to the pan. Cook over a low heat for 15-20 mins, until the onions are really soft.
Once the butternut squash is done add it to the pan and add the hot vegetable stock with the crème fraiche. Then blend in the pan using a stick blender until smooth.
Season to taste and serve with thin slices of red chilli on top if you like a bit of spice.
Peel and deseed the butternut squash and chop into large cubes. Throw into a roasting dish and drizzle over a tablespoon of oil and toss to ensure all pieces are coated.
I created this dish one cold night when I had aubergines to use up and wanted to cook something hearty and comforting. I add different beans and spices each time I make it depending on what I have in the cupboard, chorizo is a great addition for those who want a bit of spice and want more than just veg too. It acts as a filling meal or can be used as a side dish with a piece of fish or chicken, it’s very versatile and packed with vitamins and flavour.
INGREDIENTS 2 tablespoons olive oil 3 aubergines, sliced 2 garlic cloves, roughly chopped 1 onion, diced 1 courgette, chopped Pinch of smoked paprika 1 can chopped tomatoes 200ml vegetable stock 1 can of cannellini beans Parmesan
1 2 3
Heat the oven to 200C/180C fan/gas 6. Brush oil onto 2 oven trays. Slice the aubergines length ways and lay the slices on the trays. Brush the aubergines lightly with oil and season with salt and pepper.
Place in the oven and cook for about 15-20 mins or until they are soft and starting to brown.
Meanwhile heat some oil in a pan and add the onions and garlic to gently soften. Then add the chopped courgette and cook for 10 mins until softened. Add a good pinch of smoked paprika and then pour in the chopped tomatoes and vegetable stock. Bring to the boil and allow to simmer for 20-25 mins, until the sauce is starting to thicken a bit. Add the cannellini beans after about 10 mins of simmering.
Remove the aubergines from the oven and place to one side.
Take an ovenproof dish and add a layer of the sauce to the bottom, then add a layer of aubergines and repeat the process so you end up with a layer of aubergines on top.
Grate over a generous helping of parmesan and bake in the oven at 200C/180C fan/gas 6 for approx. 25 mins or until the top is golden brown and it is piping hot.
BROCCOLI RISOTTO The humble broccoli is packed with goodness, it is nutritious, delicious and affordable, so let’s use it more. Rather than just boiling it up to serve plain on the side of your plate (not hugely appealing), try using it to make this flavourful risotto. It is simple and quick to make and will really have you thinking differently about this unassuming little tree. This is another home creation that came about when I had nothing in the fridge for dinner, even the kids asked for seconds.
INGREDIENTS 1 tbsp olive oil 1 large broccoli 1 onion, diced 2 garlic cloves, chopped 1.5litres vegetable stock 300g Arborio/risotto rice 1 tbsp mascarpone 2 tbsp parmesan, grated Lemon
Cut the stalk off the broccoli and dice. Cut the broccoli head into florets and set aside.
Dice the onion and garlic.
Add the risotto rice and stir, allow to cook for a few mins until you see the rice going translucent.
Start adding the vegetable stock one ladle at a time and let each ladleful absorb while stirring constantly. Keep adding the ladlefuls of stock until the rice is cooked – you want it to have a little bite to it when you taste it. This process will take 20 mins and you want to add the broccoli florets about halfway through.
Stir in the mascarpone, one tablespoon of parmesan and a squeeze of lemon juice.
Serve with parmesan sprinkled over the top.
Heat the oil in a pan and add the onion, garlic and diced broccoli stalk. Allow to cook for about 10 mins until softened.
The Motability Scheme enables disabled people to lease a new car, scooter or powered wheelchair without the worry of owning and running one. Parents and carers can drive on behalf of the customer. The vehicle should be used by, or for the benefit of, the disabled person.
Making life easier for disabled people
“We went on our first family camping trip. Something we couldn’t have done without the new car.” Sam, Elisabeth’s mum
Who can join the Motability Scheme? You may be able to join the Scheme if you receive one of the following: • Higher Rate Mobility Component of Disability Living Allowance (DLA). • Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP). • War Pensioners’ Mobility Supplement (WPMS). • Armed Forces Independence Payment (AFIP).
What’s included on the Motability Scheme? Insurance Breakdown assistance Servicing and repairs
How Motability, the Charity can help We can provide charitable grants for: • Car adaptations to help make travelling as comfortable as possible. • Vehicle Advance Payments for larger, more expensive vehicles. • Up to 40 hours of driving lessons, to ensure disabled people have access to driving tuition in specially adapted cars as necessary.
To find out more visit motability.org.uk or call 0800 500 3186
Tyres and battery replacement
To find out more about the Motability Scheme visit motability.co.uk or call 0800 093 1000
Motability is a Registered Charity in England and Wales (No.299745) and in Scotland (No.SC050642). Motability is authorised and regulated by the Financial Conduct Authority (Reference No.736309). All cars, scooters and powered wheelchairs provided under the Motability Scheme are leased to customers by Motability Operations Ltd, who operate the Scheme on a contract basis for Motability. Motability Operations Ltd is authorised and regulated by the Financial Conduct Authority (Reference No.735390).
MIK SCARLET COLUMNIST
Follow Mik on Twitter
LOVE IN ITSELF
ith February marking Valentine’s Day, I felt that I had to take the opportunity to explore love and disability. I know how lucky I am to have found love but I also have to declare there were a few false starts along the way. I don’t know how easy it would have been to get through so many periods of my life without my wife at my side, including last year’s struggle through the COVID crisis. I also know how many people, disabled or not, aren’t as lucky. While some make the choice not to be in a relationship, others would deeply love to find love. As an old hand at the “love” lark, here’s a few bits of advice, if once we can all go back to socialising again, you plan to go in search of love. The first tip is don’t go looking for love. If you do, others can tell. You run the risk of looking desperate and that can be a real turn off. It can also open you up to the attentions of people who don’t have your best interests at
“...some will react badly or have strange views about disability, but I learned very early on that when they vocalise these they’ve done you a favour”
heart. The best approach is to go out and do things you enjoy. People are attracted to others who are engaged and following hobbies, pastimes and careers you love makes you more attractive. It also means you meet people who also share your passions. Instantly you have something to talk about, to share. I also think this works for online dating, but I have to tell you that I met my wife before online dating was a thing. In fact, I met my wife before computers were a thing! But even if you don’t originally meet a potential partner face-to-face, the need to share things you enjoy is still vital. Don’t let the fact you are disabled become a big issue in your mind. I can tell you from my experience that far fewer people care than society tells you. Sure, some will react badly or have strange views about disability, but I learned very early on that when they vocalise these they’ve done you a favour. Rather than waste time and emotion on someone who probably will never get past their prejudices, you can move on and avoid the heartache. If I’m honest, it’s the ones that keep their issues quiet, usually out of not wanting to come across as offensive or narrowminded, that are the ones that cause the tears. Sadly, there will be tears. No one avoids heartbreak. If you think they do, even the perfect, beautiful people, you’re wrong. Whether it’s being dumped by your first love, being rejected by the person of your dreams or leaving someone who doesn’t want you to go, you will wish you’d never thought of being in a relationship. All you can do is carry on, and try to learn from each failed relationship. It might seem easy to place all the blame on the other party, but being truthful with yourself will prevent you from
repeating the mistakes that caused the tears over and over. Even when you have found The One, there will be tears. No relationship goes smoothly all the time. You’ll fall out, life will throw bad times at you and it is never plain sailing. The highs will be matched by lows, but it’s love when you can get through the dips, and become stronger as you do. Being disabled, we know that life isn’t always easy and that goes for love too. It’s really important to know what you bring to a relationship, skills like coping. As disabled people we’re told far too often that we aren’t loveable and if someone does love us they must be giving things up. Even in a relationship with another disabled person, society judges us. Sod them. We bring just as much to the table of love as anyone else, disabled or not. You might need some help at times, or lead the people you’re with to face situations that they wouldn’t if you weren’t there, but my wife told me very early on in our relationship: “it’s my choice to be with you, not yours.” It’s too easy to think you’re saving someone by leaving them. If they’re with you, it’s because they want to be and you need to be happy with that. If someone does leave you, that’s not the end of the world. Yes, it will hurt, but once you’ve recovered you can go out and find someone that won’t leave. That really is perfect for you. It’s a hard lesson to learn, but it’s a fact. Happy Valentine’s Day to you all, whether you are in love, looking for love or happy being single. Here’s to us, to the future and to love. For more advice and support contact Enhance The UK’s “Love Lounge” at enhancetheuk.org/the-love-loungelive.
Euan’s Guide share some top tips to help you discover your inner chef
t Euan’s Guide, we’re all about getting out and about, especially when it involves a bite to eat! We’re missing visits to our favourite cafes and restaurants, or the experience and excitement of trying somewhere new. One of our lockdown highlights has been enjoying home deliveries from local restaurants or giving a new takeaway a go. With everyone spending more time at home we’ve been looking for ways to spice up our usual cooking and baking routine and have been loving the recipe suggestions everyone has been sharing. In search of that restaurant-athome quality, we held a virtual cooking and baking evening
with some of our Ambassadors as an opportunity to share tips and tricks for accessible cooking, as well as some delicious recipes. Here are a few of our Ambassador’s top tips and tricks…
TOP TIPS: Buy frozen chopped vegetables and herbs, and jars of chopped garlic, ginger, and chillies. This way you can use as much or little as you want and it saves on the preparation front, as well as reducing waste. Your freezer is your friend, so make good use of it with meal preparation. Make an extra portion on a day you’re
cooking or baking to enjoy on a day you’re not feeling up to the task. Tongs can be really useful for reduced dexterity or grip for picking up all sorts of items or handling hot food. They also come in all shapes and sizes which helps when it comes to finding the right one for you. Using a pizza slicer or scissors is great for cutting or slicing all kinds of food and often can be easier to grip instead of using a sharp knife. Lap trays are useful for food preparation as well as eating off and are often easier than using a work surface or table. Similarly, laptop trays are quite good, particularly curved ones with a cushion base as they can be a nice close fit to your body for doing your meal preparation. Fold away tables or trolleys can also be useful for preparing items for wheelchair users as they tend to be a bit lower than kitchen tables or counters. Dycem roll or silicone mats are really useful for stopping items from slipping away and can also be used to grip bottles and jars to open them. This was one of our favourite top tips from our Ambassador Claire: “For baking cakes with a biscuit base, put the biscuits in double sandwich bags. If you’re a wheelchair user you can run over the bag of biscuits to grind them down– it’s quite fun and therapeutic and helps with the baking!”.
TOP GADGETS: There are plenty of gadgets available to help with chopping, slicing and all kinds of food preparation. Spiralisers can be great, some come with various attachments to cut, slice or give a funky shape to your fruit and vegetables. Rocker knives and cutters are also handy kitchen tools as the large handle allows you to get a good grip. There are also lots of food processors that have an attachment for chopping or slicing vegetables, fruit or herbs, which is a great way for everyone to get involved in food preparation and can be a huge time saver as well.
A RECIPE FOR YOU TO TRY
Our Ambassadors Sarah and Karine shared this delicious roasted butternut squash risotto recipe with us. Give it a go and share your masterpiece with us on Twitter @EuansGuide, we hope you enjoy it as much as we have. Happy cooking!
SARAH AND KARINE’S ROASTED BUTTERNUT SQUASH RISOTTO Serves 2
INGREDIENTS ½ a butternut squash 1 onion Olive oil 4 garlic cloves (more or less to personal preference) Frozen (or fresh) green beans, as many as you want 400-600ml hot vegetable stock (this recipe is vegan if a vegan stock cube is used) 100g Spanish paella rice (this is a good trick for easy risotto) Salt Pepper Rosemary (dried) Thyme (dried)
Preheat oven to 180ºC (fan oven). Peel and deseed butternut squash. Cut into 2cm cubes and throw into a bowl. Add 1 tbsp olive oil, salt, pepper, rosemary and thyme to taste and 2 garlic cloves into the bowl. Mix this up so the butternut squash is well coated. Then line the coated butternut squash on a baking tray and put this in the oven, it will take roughly 25 minutes.
Sweat down the onion and garlic in a wok or saucepan. Add the paella rice and cook until it all starts to look translucent. At this point add the vegetable stock and let it simmer for 20 minutes.
With 10 minutes left for the rice throw in the frozen green beans and let them cook in with the rice and stock.
When the butternut squash is cooked throw this into the paella rice, stir and then serve and enjoy!
Electric tin openers make food prep a lot easier without having to wrestle with a handheld opener. There are also a variety of handheld jar and bottle openers available in many different shapes and sizes. If you’re a fan of the smell of fresh bread, but don’t fancy all the kneading, proving and mixing, a bread maker might be the answer. It can knead, prove, and bake the bread for you, all you need to do is put in the ingredients. Some can prepare cake mix for you too. There’s nothing quite like a warm bowl of soup, but sometimes the prep involved can be quite the task. There are soup makers available where you can add all your ingredients and it chops, cooks and makes the soup for you.
Bake Off 3
BY KATIE CAMPBELL
Remember at the beginning of lockdown when everyone was getting really into making banana bread and regular bread? We all simultaneously decided that lockdown was time to get baking. Want to take your baking to the next level? Here’s some essential products to get you there.
There is nothing more terrifying than when the oven glove slips as you’re taking something from the oven. Time stops. It’s awful. If you had grippy gloves with fingers, perhaps that wouldn’t happen? Say no more: here are grippy gloves…with fingers. Tested up to 350°C, they’re safe and comfortable to wear, and prevent you from getting burnt. coopersofstortford.co.uk | £12.99
Colour Pop Enamel Dish
The cornerstone of any baker’s arsenal is a series of good trays. Some cakes were born to be removed from their trays, like brownies or sponge cakes; but sometimes, cakes are to be served in their dishes. A big tray bake birthday cake covered in sprinkles, or your granny’s famed pineapple upside-down cake spring to mind. This speckled, brightly coloured roasting and serving dish is bright, beautiful, and perfect for serving dessert in. souschef.co.uk | From £23.99
Cooks Gloves with Grips
National Braille Week Cookbook
This fantastic cookbook is the product of legendary Scottish chef Tony Singh, and the students of the Royal Blind School in Edinburgh. It’s printed in Braille, so blind and visually impaired chefs can take a shot at recreating some of the brilliant recipes in their own kitchen. We can only hope it includes Singh’s recipe for haggis pakora, one of the finest fusion dishes to have ever been produced in any Scottish kitchen! sightscotland.org.uk | £10
Vonshef Icing Gun
Icing cakes or biscuits might be difficult for people who have difficulties with manual dexterity, or who would prefer to use one hand when baking. This really useful tool lets you ice cakes or make biscuits by loading icing or dough into the canister, and ejecting it with the trigger. It comes with eight stainless steel icing nozzles, and 13 stainless steel cookie cutter discs. makingcakeswithclass.co.uk | £9.99
Bakehouse & Co Mixing Bowl and Sieve Set
There’s nothing worse than having your mixing bowl go flying when you’re trying to whisk up some eggs, or not being able to get a handle on your bowl as you try to transfer batter into your tray. If that sounds nightmarish (it is), invest in a bowl with a handle! This 2.5L bowl has a non-slip base, so it’ll stay put on your kitchen unit while you mix up cake batter, and the sieve interlocks with the handle of the bowl, so it’s nice and easy to store, too. hartsofstur.com | £22.99
KitchenCraft Pastry Cutter Set
Making cookies and biscuits is always fun, but trying to get a cookie cutter out of dough without tearing it all up? Nightmare. Made of durable stainless steel, these pastry cutters from KitchenCraft are a godsend: they each have a sturdy handle, which makes stamping shapes into dough simple. Ideal for making scones, cookies, mince pies, and biscuits, the cutters can be stacked for compact storage. amazon.co.uk | £2.75
Tower Stand Mixer
All bakers will eventually get to a point where they feel like their life is not complete until they own a KitchenAid. That is the dream. But buying a mixer like that? In this economy? Good luck. Until you win the lottery, this Tower mixer is a great alternative. It comes with a mixing bowl and three attachments - a beater, whisk, and a dough hook, so you can make anything your heart desires. The dial makes a pleasant “click” when you turn it, so bakers who like haptic or sound response can still enjoy their mixer. ao.com | £89
Ceramic Cake Stand with Dome
You spend, what, eight hours making a gorgeous cake? A beautiful, time-consuming masterpiece? And you have the will-power to not simply eat that entire cake? You’re a hero. A hero who needs a cake stand. You need to show off that cake. A basic cake stand simply will not do; you need one with a glass dome so that you can show it off. You need people to see your masterpiece. Does the Mona Lisa belong in a cupboard, or in the Louvre? Exactly. wayfair.co.uk | £29.94
Cake release is going to change your life. This magical spray filled with fairy tears and unicorn magic (probably some kind of fat? We don’t really know what’s inside it but it might as well be full of magic) will get any cake out of its tin. Gone are the days were you turn over your tin and half the cake falls out. Gone too are the burnt edges that accompany a cake where the tin has been slathered in butter. This is the future. nisbets.co.uk | £9.69
ProCook Utensil Set
Silicone utensils are the business. Nothing gets batter out of the corners of the bowls like a good silicone spatula. Flexible but resilient, these utensils can withstand high amounts of heat, and because they’re made of a nonporous material (unlike wood), they’re easier to keep clean. The handles on these utensils each have a hanging loop, so they’re nice and easy to tidy away once you’ve finished baking the 14-tier wedding cake of your dreams. procook.co.uk | £15
It’s about the future of our communities Census Day is Sunday 21 March
Every 10 years, the census survey builds a picture of your community. It helps plan public services your family needs, like doctors’ surgeries and school places. Look out for more information in the post. www.census.gov.uk
MAKING MUSIC BY KATIE CAMPBELL FairGround Records have launched alongside their first album from artist Dima Zouchinski
righton-based charity Carousel have brought 2021 to a raucous start with the release of the first album on their new record label, FairGround Records, which will continue to put out music from “distinctive musicians with a learning disability”. The album, Aye! Ain’t Mellow from genre-spanning Dima Zouchinski expertly blends Alice in Chains’ distorted guitar work with hard punk vocals into a loud, varied soundscape that’s sure to captivate the listener. While Dima says he might be recognised as “the huge, static guy battering the hell out of a guitar,” his songs convey a raw power and energy that the listener can’t help but engage with.
Born in Russia, Dima has lived in England since he was a child, before moving to Brighton in 2017, where he began attending gigs with some of the team at Carousel. He started writing music around the age of 14, and for Aye! Ain’t Mellow, he drew inspiration from both the wider world, as heard in Yellow Vest Protest, inspired by the protests of the same name that happened in 2019 in France, and from introspection, like the self-ironic lead single, Poser, which he says is “self-irony, self-reflection based on wanting to be centre of attention and to be big and famous”. A 2019 survey by Attitude is Everything of 100 Deaf and disabled musicians across the UK found that 70% had kept their disability hidden as they feared it would damage their relationship with a venue, promoter or festival. Two-thirds reported that they had to “compromise their health or wellbeing” in order to perform live. Carousel launched FairGround Records to provide a springboard for the learning disabled music scene to release music, having been informed by over two decades of work both in the scene and as music promoters. They frequently work with groups of distinct artists in the disabled music scene at The Rock House in Brighton’s Green Door Store. Gareth Evans, senior producer music at Carousel said: “We want to help learning disabled artists navigate their life as a musician in an industry that can be harsh and unforgiving. We know from our current work that there is an appetite and a potential market for new sounds, made by people outside the mainstream. It felt right to launch a label now, when music is so important to everyone’s wellbeing. “We offer mentoring, recording, promotion and marketing, representation, as well as band support for rehearsals and touring, while remaining faithful to our DIY, artist-driven ethos.” Aye! Ain’t Mellow is available for streaming and purchase from FairGround Records’ BandCamp at fairground. bandcamp.com. For more information about Carousel, visit carousel.org.uk.
ADVANCED TECHNOLOGY TO KEEP YOU ON THE MOVE
THERA-Trainer EXERCISE BIKES ACTIVE / PASSIVE
WHY THERA-Trainer? Regular exercise at home is encouraged to help maintain and improve muscle tone, circulation and flexibility, decrease fluid retention and increase stamina levels - all vital for anyone with limited mobility.
CHOOSE THE RIGHT EXERCISE bike to suit both your need and budget from our range of THERA trainers.
HIRE PLAN AVAILABLE
FOR A FREE NO-OBLIGATION DEMONSTRATION IN YOUR HOME OR REQUEST A BROCHURE CALL US ON 01908 564100 or email email@example.com
01908 564100 firstname.lastname@example.org www.medicotech.co.uk MEDICOTECH
WIN A BETTER NIGHT’S SLEEP
WITH FIDGETBUM! Fidgetbum is an amazing solution designed to help people of all ages and abilities get a better night’s sleep and we have five to give away!
idgetbum is a soothing, non-medicinal sleep aid which is available in a range of sizes. A stretchy wraparound device that snugly holds the covers in place, without restricting the person in bed, it also provides a sense of security that sleep experts have likened to a warm hug. People of all ages are now benefiting from Fidgetbum and feedback from occupational therapists has also been extremely positive. We spend approximately a third of our lives asleep and it is widely accepted that most people need around eight hours sleep a night to function properly. For many people of all ages, achieving this amount of sleep is simply not possible due to a variety of reasons ranging from anxiety, a medical condition or disability, which can in turn lead to physical discomfort, tiredness, trouble settling and sensory issues. Sleep problems within the home can affect the whole family. From parents of young children and siblings to children with elderly parents who may
be living with them, the ripple effect can reach all members of the family. For the person struggling to sleep, the lack of sleep can leave them feeling irritable and frustrated and if they are school age, they can struggle to concentrate at school due to tiredness. Siblings can also find it hard to perform at school as their sleep can often be disrupted as well. Mel Wood is the brains behind Fidgetbum and the idea behind this solution came seven years ago when she was a sleep-deprived, stay-at-home mum, as she explains: “My youngest daughter’s frequent night-waking had left me exhausted and I was desperate for a solution to stop her kicking her covers off and waking cold throughout the night, but couldn’t find anything to help. So, I took matters into my own hands and invented the Fidgetbum.” For more information on the full range of products available from Fidgetbum call 020 3714 4497, email email@example.com or visit fidgetbum.com. You can also follow them on Twitter @fidgetbumsleep.
T&Cs: There are five Fidgetbum blankets to be given away to five lucky winners. Each winner is entitled to one Fidgetbum blanket. The prize will be delivered to the winners. The prize is not transferable nor can any cash alternative be offered. One entry per household. Entrants must be over 18. The prize is available to UK residents only and will only be delivered to a UK address. Closing date for entries is 31 March 2021.
To be in with the chance of winning this amazing prize simply email your name, address and telephone to firstname.lastname@example.org, visit posabilitymagazine.co.uk to enter online or fill in your details and post this form to the address below:
Fidgetbum Competition PosAbility Magazine 20-23 Woodside Place Glasgow G3 7QL
Postcode: Tel: Email: ü
Fidgetbum would like to send you more information about their products. If you would like to receive this please tick the box. By ticking the box you are consenting to us providing your details to Fidgetbum.
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Dress THE PERFECT
BY STEPHANIE QUINTRELL
Stephanie Quintrell shares her experience of finding the perfect wedding dress and discusses the importance that inclusive attitudes can make to the shopping experience
am pretty sure that all brides to be want to find the one. By that I mean the perfect wedding dress. We all crave the chance to feel truly beautiful and I think we should all have the opportunity to feel that way. In December 2019 I married my handsome soldier and was blessed enough to have a perfect wedding day. However, I had a bumpy ride on my journey to find the perfect wedding dress. Dress shopping for lots of brides is daunting, intimidating and full of worry that we won’t look as perfect in a dress as we hope we will. Add a wheelchair into the mix, with limited mobility and it has suddenly become an even more terrifying situation. Initially I purchased a dress that I felt very pretty in, but at my fitting just five weeks before the big day, the experience turned into a complete disaster. I had put on more weight, my mobility had decreased further and after unwelcome comments from the seamstress, I felt uglier than I ever had before. My wheelchair felt like an issue. My disability felt like an issue. This certainly didn’t help with the way I was feeling about myself and only added to my mass of insecurities.
Every time I look at my wedding photos, I see the selfconfidence glowing from me
My mum urged me not to give up, so I phoned the owner of a different bridal shop nearby whom I had purchased a veil from. After a 10 minute conversation with me sobbing down the phone, she asked me to come by the shop and promised she would help. From the minute I wheeled into The Bridal Dressing Rooms, I felt different. Her enthusiasm completely changed my dress shopping experience, her passion made me feel incredible and as promised, she found me the perfect gown. More importantly, my wheelchair never once presented as an issue to her. I felt just like every other bride, excited for my wedding and beautiful in my dress. Nicola and I have stayed in touch since. She is one of those people who really doesn’t appreciate themselves for the impact her actions and attitude has on others. Her just doing a job she loves completely changed my perception of myself and totally transformed how I was feeling in the run up to my big day. Furthermore, Nicola contacted me early last year to ask if I would be part of a new advertising campaign she is running. Her vision is to show how every bride, regardless of weight, size, ethnicity, religion or ability, has a place at her shop. A safe place where they can find the perfect dress and become the beautiful bride they dream of being. I of course jumped at the chance to model in one of her gorgeous dresses and be part of a project I feel so strongly about. In my opinion, people like Nicola are changing the world. They are shaping a future that is so much more inclusive and accessible to all. Nicola is pushing the boundaries of the wedding industry and challenging what society sees as the “traditional bride”. Being someone who has acquired their disability, I am still not living with complete confidence about how I look and the way I feel about myself. I am getting there, and I am willing to do what I can to help others as well. The wedding industry is so big now and I feel it has a lot to answer for. We are not all going to look like the stereotypical bride that we see in most bridal advertisements. How does this help to make any of us feel better about ourselves? We are seeing a more diverse group of models in the fashion industry now, so why can’t the bridal industry follow suit. Buying a wedding dress was far bigger to me than just purchasing a dress to wear to get married in. Every time I look at my wedding photos, I see the self-confidence glowing from me and this has an awful lot to do with the journey itself.
You can follow Stephanie on Facebook @diaryofadisabledmum. You can visit The Bridal Dressing Rooms at thebridaldressingrooms.co.uk.
CREDITS Shoot photography by Leah Marie Photography. Shoot make up by Makeup by Fowzia.
We bring you a mix of the most innovative and helpful products on the market today
BOOK STAND This stylish bamboo book stand is ideal for holding books, magazines and even tablets. The springed arms have rubber ends to allow them to hold books and devices in place without marking them and the stand itself can be adjusted to six different angles to ensure you find your optimum reading angle. Prices from £17.99 amazon.co.uk
GLASSOUSE This clever device is a wearable mouse that you wear just like glasses to operate a computer, smart TV, tablet or phone. It links to your devices through Bluetooth and the on-screen pointer is moved by small head movements. A mouse click is performed using a switch and there are many to choose from depending on your needs. Prices from £349.95 01564 702 255 activehands.com
RASCAL VISTA AND VISTA DX These popular 4mph mid-size scooters benefit from quick release features, dismantling into a few easy-to-lift sections for transport and storage. The compact and slim-line style offers plenty of legroom yet it is still extremely robust with generous turning manoeuvrability. Available in two vibrant colours, both boast great range, carrying capacity and comfort.
NILAQUA TOWEL-OFF SHAMPOO Discover this effective alternative to traditional hair washing with the Nilaqua Towel-Off Shampoo, a formula that provides around 4-6 washes, making it a very cost-effective way to wash your hair without water. Simply apply the solution, massage in and towel-off to reveal soft, silky, clean hair.
Prices available on request 0800 252614 electricmobility.co.uk
Prices from £2.35 (65ml) 01453 357337 alcoholfreesanitiser.co.uk
SPACE LX ROLLATOR The Space LX combines intuitive design and high strength alloy materials. It’s lightweight making it easy to walk with, lift and turn. It has height-adjustable handles with indexed settings and is available in medium or large and three colours. It is also fitted with a backrest, stick holder, quick positive braking system and integrated removeable basket. Maximum user weight is 150kg. Prices available on request 0333 220 0704 rehasense.co.uk
SPOONIE SPOONS Searching for the perfect gift for a spoonie friend? These engraved wooden spoons are a great choice to show someone living with chronic illness that you are thinking of them. An extra spoon could be just what they need in the kitchen and on their tough days. Prices from £5.50 Search ‘Silly Jokes’ on Etsy
QUARANTINE AND CHILL CANDLE This funny little candle is designed to bring a little light-heartedness to the current situation. It lists a whole host of reasons to light it which we can all relate to. Made with natural soy wax, it is hand poured in small batches and oozes a calming fragrance. Prices from £18.37 Search ‘Zoeysattic’ on Etsy
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BY KATIE CAMPBELL Black American Sign Language grew out of segregation in the United States, and is slowly but surely becoming a more widely recognised variant of American Sign Language
Nakia Smith with her great grandmother who also signs in BASL
merican Sign Language (ASL) has a torrid history. Given the close historical ties between Britain and America, you might expect ASL to originate from the same language family, and share the same linguistic genealogy, so to speak, with British Sign Language; in the same way that German and English share the same roots. They are, however, entirely distinct from each other: BSL in its original form, Old British Sign Language, was first taught by Edinburgh teacher Thomas Braidwood. When in 1815, American minister Thomas Hopkins Gallaudet travelled to Europe in order to research ways in which he could begin teaching Deaf students, he was disheartened to find that Braidwood would not impart his wisdom upon him. That was when Gallaudet upped sticks and travelled to France, where he would learn Old French Sign Language. As a result, a modern French Sign Language is more intelligible to a modern ASL signer than BSL!
Nakia Smith, also known as Charmay, went viral last year after posting a video of herself signing in BASL Like any language, sign languages have dialects and variations. Black American Sign Language (BASL) is one of those variations, and like African-American English and its variations, its origins come from the segregation of Black Americans, which stemmed from the enslavement of Black African people in the colonial United States as early as the 16th century. It is important to remember that the United States did not grant equality in the eyes of the law to Black Americans until 1968, when the decades-long struggle of Black Americans to be recognised and live without disenfranchisement, racial segregation, and institutional racism culminated in, among other things, the Civil Rights Act of 1968. The American School for the Deaf was founded in 1817, opening originally only for white children, and was integrated eight years later. Few schools specifically for Deaf Black students were opened at a time when segregation was still rampant throughout the United States - especially in the South - and where education was offered for Black Deaf students, it was provided on the campuses of Deaf schools labelled specifically for “coloured” students, segregating Black children further in their education, and resulting in BASL arising as a variation of ASL, which was not being taught correctly to Black students, many of whom were encouraged to learn orally (using sound) instead of manually (using signing). Some Deaf schools took up to sixty years to offer an education to Black children, and while many were opened in the 1800s, they did not begin to
actively desegregate their classrooms until the beginning of the Civil Rights Movement in the 1950s and 60s. This created a chasm of difference between ASL signers and BASL signers: in studies by Gallaudet University, an American further education facility for Deaf students, Black Deaf people noted that in moving from environments where they had been signing with other Black people to an education environment organised by white people, both groups had difficulty understanding each other’s signing, because the BASL variation had acquired some level of difference. Where ASL typically uses one hand to sign, BASL - like BSL - has a tendency to use both hands. The space which BASL signers use tends to be larger than ASL signers, and they use more sign variations involving areas of the body like the forehead. Older BASL signers are more likely to use variant signs than their younger counterparts, and that’s because these variants will have been commonly used in segregated schools - bearing in mind that schools in America were only desegregated 67 years ago, and many people who attended segregated schools are very much alive. By the same token, younger signers, who do not attend segregated schools, are less likely to use the variants, but are aware of them due to their interactions with older BASL signers. Nakia Smith, also known as Charmay, went viral last year after posting a video of herself signing in BASL with her grandfather. In a video for Netflix’s Strong Black Lead, she says: “The biggest difference between BASL and ASL is that BASL got seasoning!” Watching someone sign BASL is incredible because there’s a huge amount added to the language - seasoning - through the strong presence of extra-linguistic information: body language, facial expressions, and mouthing all play a huge part in what makes BASL different from ASL. BASL also borrows heavily from African American Vernacular English (AAVE), so terms like “and that’s on peridodt,” which roughly means “end of discussion,” “stop tripping” and other idioms commonly used in AAVE have their own signs in BASL. There are also additional variations for words like “embarrassed,” “hurt,” and many others. As with all Black culture, there is an unfortunate and completely unnecessary degree of racism that follows BASL. It’s considered non-academic or informal, much in the same way AAVE is, meaning a lot of BASL signers are required to code switch - that is, move between BASL and ASL - in order to feel like they are being taken seriously. BASL is a valid variation of ASL, however, and is inadvertently acting as a form of preservation for the older styles of ASL, of which it is more closely related due to its origins from language socialisation coming out of segregation. To learn more about BASL, you can watch the brilliant documentary Signing Black in America, which features fantastic interviews with BASL signers, academics, and interpreters, or check out Charmay’s TikTok @ItsCharmay.
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Alcoholics Anonymous has over 4,440 groups throughout Great Britain dedicated to helping those with a serious alcohol problem learn how to stay sober. Groups are made up of people from all walks of life and all age groups. Through friendship and mutual support, members assist each other in coping which is made easier by meeting others with the same problem. There are no dues or fees for membership and anonymity is carefully preserved. Anyone who believes they have a drink problem can contact Alcoholics Anonymous by using the helpline number above or email; email@example.com Further information may be obtained from the web-site above or from the General Service Office at the address below. For information: P.O. Box 1, 10 Toft Green, York. YO1 7NJ Tel: 01904 644 026
ANGELMAN SYNDROME BY KATIE CAMPBELL
Raising the profile of rare diseases is vitally important, so with that in mind, what is Angelman syndrome?
cottish author Ian Rankin, who penned the internationally acclaimed Inspector Rebus series of novels, has been speaking recently about the difficulty his family has faced over the pandemic with regards to not being able to spend quality time with his son, Kit. Kit lives with Angelman syndrome, and is shielding in a care facility, where Rankin says he is exceptionally well looked after. Perhaps inadvertently, this has raised the profile of Angelman syndrome - and that’s a good thing. Raising
awareness for rare diseases is vitally important: it increases awareness amongst the general public, healthcare professionals, policymakers, and researchers, all of whom have a degree of power when it comes to supporting people who live with rare diseases and conditions. It may not feel like it, but the general public can help raise funds, which in turn helps researchers; healthcare professionals with a wider knowledge of rare diseases are able to produce earlier diagnoses, which can be helpful to people living with these conditions; and policymakers can use their awareness to support anyone who may be affected by rare diseases from a legal or political standpoint. With this in mind, let’s take a valuable moment to get educated on Angelman syndrome. Angelman syndrome is a genetic disorder that affects a person’s nervous system. It affects a person’s chromosomes, and this is where a bit of genetic biology comes into play. Most people have 23 pairs of chromosomes inside their body - some people don’t, or they have more, or their chromosomes are a little different. In the case of people who live with Angelman syndrome, there’s a small area of the 15th chromosome which doesn’t work as it’s expected to. Chromosomes look like two little tubes joined together about two-thirds of the way up to make an X shape, with the short arms called the p arms, and the longer arms called the q arms. The region that doctors look at when they’re trying to diagnose someone with Angelman syndrome is 15q11-13: that means it’s sections 11-13 of the 15th chromosome on the q arm.
What’s important about this little bit of chromosome is that it contains a gene, UBE3A, which makes a protein called E6-AP, and it helps with “housekeeping” inside cells. In people who live with Angelman syndrome, the maternal copy of UBE3A is “switched on,” but while it’s still there, the paternal copy is “switched off” - this is called imprinting. This is also the very same gene that geneticists will examine if they think a patient might be living with another rare genetic disorder called Prader-Willi syndrome. Because of this, if a couple have a baby who lives with Angelman syndrome, there’s about a one in two chance that another child they have will also live with Angelman syndrome.
Angelman syndrome is named for the physician who first identified it, Dr Harry Angelman
There are symptoms consistent with a diagnosis of Angelman syndrome, and some that are associated with it, but ultimately, everyone who lives with Angelman syndrome will have a different experience. The consistent symptoms of Angelman syndrome include delayed development, severe learning difficulties, issues with movement and balance, and little or no speech. Some people who live with Angelman syndrome might also experience seizures, as well as being full of laughter. People living with Angelman syndrome are often recognised by their very smiley, happy disposition. That’s not to say that they don’t experience a wide range of feelings or emotions. Angelman UK is a brilliant charity who have wonderful support for families and people who live with Angelman syndrome, and they’ve produced some excellent videos which give insight from families which include a sibling or child who lives with Angelman syndrome. In their words: “Syndrome and its characteristics. Some common behaviours include; determination, excitement, love of food, therefore grabbing food, pulling hair, stubbornness, chewing
clothes, a short attention span, hugging, and reaching out for objects and people in the surrounding environment.” Angelman syndrome is named for the physician who first identified it, Dr Harry Angelman, who was the first to write about three patients he treated in children’s wards around 1964, all of whom were experiencing similar symptoms. It’s worth noting, however, that it wasn’t always called Angelman syndrome - this name was adopted in 1982 - but this is the preferred name for the genetic disease, and its previous name is now considered a pejorative. People who live with Angelman syndrome can expect to live a long life, and they benefit from supportive care from occupational therapists, neurologists, sleep specialists, paediatricians, and many other medical professionals, who can utilise a multi-disciplinary approach to ensure that people living with Angelman syndrome can live their fullest, happiest, healthiest lives. For more information about Angelman syndrome, visit angelman.org.
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Railways BY KATIE CAMPBELL
In the next ten years, our railway stations should become considerably more accessible for everyone - but how accessible are they for passengers currently?
ith the origin of Britain’s railways dating back almost 200 years, it will come as no surprise that many of the 2,566 train stations - that’s not including the stations of the London Underground, Glasgow Subway, Docklands Light Railway, or Tyne and Wear Metro - located all across the country are, at times, not the most accessible. With the government committed to ensuring every station in Britain has stepfree access by 2030, we take a look at how accessible our railway network is, and what it needs to do to allow everyone to get onboard.
The five most used train stations in Wales are Cardiff Central, Newport, Cardiff Queen Street, Swansea, and Bridgend. Much like in Scotland, the accessibility of these stations are exceptionally good: Cardiff Central, Newport, and Cardiff Queen Street, lack a Changing Places facility, while Swansea and Bridgend provide all of the accessibility provisions listed by Network Rail. In figures published by the House of Commons library, Wales excelled in its offering of train ramp access at stations (94%) and step free access (79%). Some areas of Wales, including South Glamorgan and West Glamorgan, internally provide excellent accessibility options, with 100% of ticket machines being accessible and 89% of stations in the area offering step free access, respectively. However, the area of Gwynedd - home to Snowdonia - ranked one of the least accessible in Britain in the areas of accessible ticket machines (6%), accessible ticket offices (6%), and mobility set down (6%).
Scotland’s four busiest railway stations - Glasgow Central, Edinburgh Waverley, Glasgow Queen Street, Paisley Gilmour Street, and Haymarket - are all ranked highly in their accessibility. Central and Waverley lack a National Key scheme toilet, while Queen Street, Paisley, and Haymarket do not have a Changing Places facility. Otherwise, each of these stations offer step-free access, have staff available to help any traveller who requires it, and offer train access via ramps. Accessibility at stations in the Highlands is spotty in locations: for example, most of the stations on the Far North line, which connects Inverness to Wick do not provide ramp access to trains, are only partially accessible, lacking any kind of toilets, and many are unstaffed due to their remote location. Per information provided by the House of Commons library, Scotland scores lowest in stations offering train ramp access (35%), National Key scheme toilets (4%), and mobility step down (10%).
Outside of London, the four busiest stations are Birmingham New Street, Leeds, Manchester Piccadilly, and Gatwick Airport. As major transportation hubs, these stations are very accessible: Birmingham New Street has all available accessibility provisions listed by Network Rail, Manchester Piccadilly and Gatwick do not have Changing Places facilities, and Leeds lacks both a National Key scheme toilet, and a Changing Places facility. On average, England excluding London offers better than average provisions for disabled travellers: overall, 68% of stations offer step-free access, and 80% offer ramp access. In some areas, this is higher, such as in Yorkshire and the Humber, where 99% of stations offer ramp access to trains, and in the North East, where 84% of stations have step-free access. Within London, accessibility varies: it has the highest percentage of accessible ticket offices (33%), and the lowest percentage of stations which offer step-free access (44%). Its busiest stations - Waterloo, Victoria, Liverpool Street, London Bridge, and Euston - all offer a high degree of accessibility: however, Waterloo, Victoria, and London Bridge lack National Key Scheme toilets and a Changing Place, while Liverpool Street and Euston have no Changing Places facilities.
Figures taken from House of Commons Library publication How Accessible are Britain’s Railway Stations? Published February 2019.
TRUTH about TOURETTE’S
BY SARAH WALL
Sarah Wall offers a personal insight of living with Tourette syndrome and dispels the myths surrounding this misunderstood condition
hock, humour and disgust are normally the top three reactions I get when I first tell people I have Tourette’s. Shock because I look like any other person in the street, humour because people automatically assume I am going to come out with a barrage of profanities, or disgust because whilst people like to harp on about accepting differences, the reality is a very different scenario. Nevertheless, I cannot blame people’s reactions because the majority of their preconceived ideas are formed solely from what they see in the media. On one hand it is great the condition is getting much needed coverage, but on the other it isn’t ideal when the main media portrayal is surrounding the notion that Tourette’s is all about swearing and profanities. I am not sure why the media likes to do this, maybe because it is such a unique symptom that is a shock for most people, or maybe to increase the humour, or maybe just for the ratings, but today I would like to share with you the real world of Tourette’s by busting the myths and presenting the much-needed truths.
SO, WHAT IS TOURETTE SYNDROME?
Tourette syndrome (TS) is a neurological condition that affects over 300,000 children and adults in the UK. The main characteristics of TS are tics – which are repetitive involuntary sounds and/or movements. Vocal tics (sound) range from simple tics such as grunting to more complex tics including repetition. Motor tics (movements) range from simple tics like grimacing to more complex tics such as jumping. Tourette’s was actually the first of my five chronic conditions I ever had diagnosed at the age of 18. Prior to this
diagnosis I was wrongly diagnosed as being epileptic with my specialist believing the ‘episodes’ I was experiencing were seizures, when in truth they were tics. My tics have evolved over time and now consist of pacing back and forth, facial grimaces, body stiffening and hand twisting and shaking. I would describe the sensation of needing to tic as an urge, a bit like an alien in my chest fighting to get out which, once I tic, dissolves. I have the ability to control my tics in public, but doing this puts enormous pressure on my body which is not ideal as it increases the symptoms of my other chronic illnesses.
MY TOP 5 TOURETTE SYNDROME MISCONCEPTIONS MISCONCEPTION –
All people with
Right let’s get down to the nitty gritty straight away because thanks to the media this is the biggest myth of all. I can categorically tell you that this is false and no, not all people with TS swear. In fact, coprolalia, (the term for involuntary swearing), only affects around 15-20% of the TS community indicating the media is zoning in on the symptom that affects people the least.
Tics are a childhood
T R U T H – It is true some people only experience tics in their childhood and essentially grow out of it, some people will find it comes and goes throughout their lives, but others will continue to have it consistently into their adult lives. I am 32 and tics are still very much part of my life. MISCONCEPTION –
‘You can’t be that
bad, I’ve never seen you tic’
People with TS cannot tic on demand. In fact, some people have the ability to suppress their tics in order to go about their day-to-day life and avoid discrimination. Whilst there may be a temporary interruption or suppression, the majority of people will still feel the need internally and therefore will need to let it out at some point. Depending on the individual not everyone can suppress their tics or feel the need to, yet that doesn’t mean the people who do are any less affected.
stops you having a typical life
Absolutely not! Tourette’s is a challenging condition there is no doubt about it, but it has no reflection on talent, intelligence or just pure determination. In fact, living with Tourette’s teaches you to be resilient, handle criticism and to be an individual - all of which are great skills to carry with you on whatever path you take. If you need further proof there are many celebrities who have achieved their dreams whilst experiencing Tourette’s at some point in their lives, for example, actor Dash Mihok, jazz musician Michael Wolff and even Mozart was suspected of being a fellow ticker – pretty impressive right?
TS is a mental health
Whilst the cause is not fully known, TS is in fact a neurological disorder. TS can however have co-occurring conditions such as ADHD, OCD and anxiety alongside it. Of course, people living with TS can develop mental health disorders separately in the same way anyone else can, but not because of the condition itself.
For more information on TS visit the charity Tourettes Action at tourettes-action.org.uk. You can read more form Sarah on her Me, Myself and Chronic Illness blog at memysefandchronicillness.home.blog or you can follow her on Twitter @me_illness.
...coprolalia, (the term for involuntary swearing), only affects around 15-20% of the TS community
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Use Your BY CAROLINE BUTTERWICK Whether it’s leading a discussion with social work students about how to support someone in crisis or sharing our story as part of a campaign, there are lots of ways we can use our experience of living with disability
NOTHING ABOUT US WITHOUT US “Nothing about us without us” is the well-known rallying cry of the disability rights movement. Campaigning led by disabled people has brought historic changes, such as the Disability Discrimination Act in 1995. Our voices should be key to developing and delivering services that support us, or in campaigns to challenge discrimination or make vital changes to the law. My interest in using my lived experience of visual impairment and mental ill health began when I was a student, forming a group with other disabled students to campaign for change. Who better to say how the campus can be made more accessible than those who know the barriers first-hand? For the past two years, I’ve been a member of the Service User and Carer Reference Group (SUCRG) for Think Ahead, a charity that runs a two-year graduate programme in mental health social work, where those with lived experience of mental illness are active in the recruitment and training of future mental health social workers.
The service user movement in mental health stretches back decades, with the “mad politics” of the 60s and 70s and Mad Pride activism of the 90s, evolving into the modern service user movement. Today, those with lived experience of mental distress are involved in everything from recruiting staff to developing training, with service users playing a key role in the recent Independent Review of the Mental Health Act. In SUCRG, we co-produce and co-deliver teaching, helping link lived experience with social work theory. SUCRG members are also involved in assessing prospective participants of the Think Ahead programme, interviewing them and being an active part of the recruitment process. One of my highlights of working with SUCRG was contributing to teaching at Think Ahead’s Summer Institute, where their new cohort of trainee mental health social workers first meet over several weeks to learn about social work ideas before starting their on-the-job training. It was great to share my experience of what makes a good social worker, as well as highlighting some of the negative sides of my experience as a service user and what needs to be better. We all carry our own stories and perspectives, and feedback from participants highlights how much they value hearing these.
WHY GET INVOLVED? Our voices can be used to influence policies and improve services. On a personal level, it can help you develop skills like confidence, team working and public speaking, and in some roles, earn money for your involvement. For me, one of the unexpected benefits of service user involvement is the chance to take ownership of my narrative. I get to tell my story in my own words in a life that has at times been greatly controlled by others. It’s also satisfying to see the impact of your work. As a disabled student, seeing the university install automatic doors and mark the edges of steps after we raised these issues was a great outcome, and one that wouldn’t have happened if we didn’t campaign. I also enjoy the social aspect of involvement and the sense of solidarity.
FINDING OPPORTUNITIES There are opportunities to draw on your lived experience of disability in a range of settings. NHS trusts and social care providers are a good starting point. They may use terms like “patient panel”, “experts by experience” or “lived experience practitioner”. Universities often have service user groups for their health and social care courses. Research on the organisations’ websites, as many will advertise opportunities on there, sometimes under categories like “get involved” or on their main jobs page. If you can’t find anything, contact them and ask what lived experience opportunities they have. User-led organisations are those run by and for disabled people. They exist across the country and are a fantastic way to have your voice heard. Shaping Our Lives is a national organisation and network of user-led groups, service users and disabled people. Their website lists service user organisations across the country. The National Survivor User Network (NSUN) is a great resource for mental health service user involvement. It’s well worth
There are opportunities to draw on your lived experience of disability in a range of settings
signing up to their weekly newsletter, which links to relevant news stories and research in the sector and lists involvement opportunities. Charities and non-profits are usually keen to hear from people with lived experience to share their stories to challenge stigma, raise awareness, or contribute to their policy work. Some look for volunteers who are happy to work with the media, and many provide media training to help you feel confident working with journalists. There are other ways to get involved without committing to being part of a group or regularly campaigning with an organisation. Lots of disabled people use social media or their own blogs to share their experiences. You could also explore creative approaches, like poetry or art. And of course, writing articles about your lived experience is another avenue and could help you reach a large audience. Search online for guides on how to pitch article ideas to editors. For those in work, look at getting involved in your trade union. Unions often have disabled members’ groups with their own meetings and conferences, and your branch may have roles like an equality or welfare officer. For students, look to your students’ union to see if there’s a group for disabled students – and if not, look at setting one up. Other opportunities include running disability awareness training, access auditing, peer mentoring, or inspecting services as an “expert by experience” with the Care Quality Commission. In SUCRG, we’ve been meeting and teaching online for the past year, so there are still ways to get involved even with the pandemic. There is such an abundance of opportunities out there for using lived experience. All of us have something valuable to contribute – so why not explore these opportunities and see how you can get involved?
WEBSITES thinkahead.org shapingourlives.org.uk nsun.org.uk
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ancake Day is nearly upon us and there is no better time to get the kids in the kitchen to make a mess and enjoy some family time. The great thing about pancakes is that you can vary the recipe to suit so many diets and taste preferences and kids generally love them! It is a stressful and worrying time for families with SEND children and although our children are resilient, a lot has been asked of them this last year. Let’s make the most of the opportunities for some light-hearted fun and distraction from what’s going on in the world.
Our young columnist this issue is Emily Nicole Roberts who has been sharing videos on YouTube to help young people living with cerebral palsy, you can read her thoughts on page 61. Regular columnist Dan White highlights the challenges facing families with disabled children during lockdown, read more on page 57. You will also find our usual host of innovative kids products on page 58. If there is anything you would like to see covered in a future issue please don’t hesitate to contact us by emailing email@example.com.
Pancake Day BY ROSALIND TULLOCH
Shrove Tuesday falls on 16 February this year and it is a great excuse for indulging in delicious pancakes and for getting the kids in the kitchen for a bit of fun
here is nothing more delicious than tucking into freshly made pancakes covered in your favourite topping. Whether it be maple syrup, Nutella, jam, or fresh fruit and lashings of cream, it is comfort food like no other, and the great thing is that you can make variations to suit every diet. Now, there is a bit of confusion around what constitutes a pancake and what you as an individual may associate with Pancake Day, so whether it is a Scotch pancake, a crepe, a drop scone or American pancake that you make, be sure to enjoy it with your favourite toppings and favourite people! It’s great fun getting the kids into the kitchen to make pancakes and you can ensure there is a job for everyone, from cracking eggs, to mixing the batter or being the very important taste tester. We have looked out some recipes that will suit a variety of tastes and diets, so look out your aprons and get ready for some floury fun with the kids.
This recipe has been adapted from the BBC Good Food website and will make approximately 16 pancakes. It gets great reviews on taste and fluffiness, and they are really simple to make.
INGREDIENTS 300g self-raising flour 1 tsp baking powder 1 tbsp sugar (any kind) 1 tbsp vanilla extract 400ml plant-based milk (soya, almond or oat) 1 tbsp vegetable oil for cooking
Add the flour, baking powder, sugar, vanilla and a pinch of salt into a bowl and whisk together with a balloon whisk until mixed.
Slowly add the milk and whisk until you get a thick batter.
Heat a little oil on a non-stick frying pan over a medium heat.
Add two tablespoons of batter to form a small circle in the frying pan and leave for 3-4 minutes until you see the edges browning and bubbles appearing on top, then flip the pancakes over to cook on the other side for a further 2-3 minutes or until golden both sides.
You should be able to do these in batches of two to three pancakes.
Keep warm under a tea towel or in a low temperature oven until you are ready to eat.
Serves with your favourite toppings.
DAIRY FREE CREPES
These exceptional little delights are gluten and dairy free, the recipe is adapted from Becky Excell a gluten-free recipe creator based in London. Again this is a super simple recipe that produces deliciously light and thin crepes.
INGREDIENTS 220g gluten free plain flour 4 large eggs 450ml plant-based milk (soy, almond or oat) 1 tbsp vegetable oil (for cooking)
Pour the flour into a large mixing bowl.
Beat in the four eggs one at a time.
Gradually pour in the milk while whisking, until you have a nice smooth, thin batter.
Transfer the batter to a jug.
Heat a little oil in a non-stick frying pan over a medium-high heat.
Pour the batter evenly into the hot pan and tilt it around to ensure the whole pan base is covered.
Fry for about 1 minute or until the edges look cooked before flipping carefully onto the other side to finish off cooking for 20-30 seconds or until golden brown.
Keep warm under a tea towel or in a low temperature oven until you are ready to serve.
Serve with some delicious toppings.
TOPPINGS The best part about pancakes is the toppings you choose to put on them. Whether you like a traditional lemon and sugar flavour hit or you like to smother them in jam, some of you may even like a savoury option. We have created a thorough list of toppings below for some inspiration this Pancake Day: Maple syrup (or golden syrup) Nutella (or another chocolate spread) Jam Blueberries Strawberries Raspberries Banana Chopped hazelnuts (great over Nutella) Lemon Sugar (any kind) Whipped cream Chocolate chips Sprinkles If you make some delicious pancakes this Shrove Tuesday be sure to share your pictures with us on Twitter @PosAbilityMag.
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one another. I know there is no magic wand to summon up a COVID immune physiotherapist from somewhere, but who exactly is checking in on families like this? Charity phone lines can help, but as far as physical intervention goes, what is there? There is no direction from anyone in the Department for Health and Social Care, no path for families to follow, in short, there is simply silence from the very people who are in situ to actually care.
Follow Dan on Twitter @DeptOfAbility
We need and deserve direction, especially with the vaccine programme, but the system around us is shown to be not fit for purpose. We need at least a minister for carers, working and answerable to us. The ever-rising number of carers (6,000 extra more people a day) shows us that we are an essential and rapidly expanding community deserving of political representation. This needs to happen before there is a humanitarian crisis in our homes. Families are calling out and the political door stays firmly shut through apparent ignorance of disability.
Dan White, creator of the amazing Department of Ability superheroes and dad to Emily, who is 12 years old and has spina bifida, is a regular face in PosAbility, as he shares his experiences of life as a family with a disabled child.
efore writing this column I decided to put out a call on Twitter for lockdown experiences from parents of SEN and disabled children. The consensus was that families feel “abandoned and let down” over lockdowns. Carers like myself are feeling increasingly isolated and our children even more so. I’ve been reading emails and messages of the devastating impact of lockdown on children. Their parents have watched them lose vital life skills, retreat into non-communicative states, and watch years of intensive physiotherapy unwind, causing drastic physical health issues that impact negatively on the independence they have worked so hard to gain.
discussions around COVID have been so confusing from the government. I am a 48-year-old man with a bit of savvy and even I find it hard to peel away the layers of scientific language and slides. What chance does a child with a learning disability have in understanding the baffling language and snap decision-making that goes on? If we even struggle to translate policy to our children then the briefings are guilty of ableist practice, letting down millions of LD families, exacerbating their fears to the detriment of their health. The way information is spread, especially in pandemic times has to reach the ears of everyone easily, it has to be accessible and translatable. Children need reassuring in every form.
One parent told me his son has had no input from professionals. No occupational therapist, no physiotherapy, no speech or language help. None of this is available unless he is attending school, school which he is too afraid to attend because of the risk of infection. Another said that her daughter’s physical and mental health is struggling as she has become too afraid to go outside because of COVID. What’s telling here is the way that the
Understanding and language aside, the most unsurprising message came from a dad who told me that all his son’s respite has stopped. His regular source of help (his wife’s parents) cannot visit as both of them have long-term health conditions which mean the care that they all require has ended. That’s three people abandoned, three people who require care who now, from somewhere, have to find the energy to look out for
Our story is no different. Our daughter has been out of school for 10 months and the withdrawal of support has seen her mental health nosedive. The school has been silent in following up on her, she has withdrawn and CAMHS (Child and Adolescent Mental Health Services) is so broken that desperation has led us to pay for the support she needs. This is the final proof that services provided by the state are gutted, left to ruin and nonfunctional, unable to provide any support for the ones they were created to assist. Parents are having to pay, to increase the debt of already tight household budgets to save their children. I know lockdown has been a difficult process for everyone, I’m not diminishing the effect it had on any other community, but it’s fair to say SEN children and their families have been isolating and shut-in longer than anyone else. Lockdown has been a continuing, gruelling reality, with no end in sight. The promise of “no one left behind” was broken on day one with care being a secondary thought from a government caught with its pants down and borders open. It’s not too late to address the concerns of 18 million people, not too late and not impossible. posabilitymagazine.co.uk
This handmade, colourful, wooden rocker is a wonderfully versatile toy that can be used for so much imaginative play. Kids can climb over it, rock in it or even use it for imaginative play with their toys. Designed to help motor skills, agility and to encourage creativity, the opportunities are endless. The ramp is an optional add on for the rocker. KateHaa on etsy.com
TUMMY SCOOTER BOARD
This sturdy plastic tummy scooter board with handles is a great way for kids to scoot around the house having fun while simultaneously strengthening their core, their hands and wrists. This can also help improve spatial awareness and fine motor skills. Available in a range of colours to choose from. sensorydirect.com
GREY STAR FACE MASK Fledglings have created an accessible face mask with a clear panel to help anyone who uses lipreading or facial cues to communicate. The rise of the face mask has increased the isolation of many people in the hearing loss community, including children, these masks ensure your little ones can be part of an inclusive society. fledglings.org.uk
JUMBO LACING BEADS
TEETER POPPER This funky little balance toy is a fantastic creation for kids. As kids stand, sit or kneel and rock on it the suckers underneath grip and release to make a popping noise, just like bubblewrap popping! A great fun toy it can also be used to help children relax and unwind with the rocking movement and therapeutic sound of the poppers. happypuzzle.co.uk
These jumbo beads are designed to be laced onto the string, helping to develop fine motor skills, dexterity and handeye coordination. The range of colours and shapes capture kids attention and encourage kids to focus on lacing all the beads as a fun game to make a snake, a necklace or a wiggly worm! amazon.co.uk
SKIPPI PLUS POWERCHAIR The Skippi Plus powerchair with lift seat can offer your child increased mobility, allowing them to move independently and go off exploring just like children should. Thanks to its slim frame it is very manoeuvrable, allowing your child to access even the smallest of spaces or corners, and it can be taken apart easily for transport or storage. ottobock.co.uk
At Sanctuary Supported Living we provide supported housing, move-on accommodation, CQC registered services, including residential care and nursing homes, and floating support. We specialise in services for young people, people with physical and learning disabilities, people with mental health needs and acquired brain injuries, and homeless families and individuals. Our personalised care and support services enable people to identify their goals and aspirations, setting them on their pathway to independence. Visit our website to find your nearest service in England. 0330 1233 247 @SancSL www.sanctuary-supported-living.co.uk
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The YouTube videos I searched for, I now create. From getting dressed, to driving, to just being me, at the very least, hopefully, I’m showing others that they can be themselves too.
Hitting 1,000 subscribers on YouTube, working with the BBC, being shortlisted for a National Diversity Award, speaking on Radio One with Greg James, just last year alone, that all came from just being myself. If you take nothing else away from this piece just know this:
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.
EMILY NICOLE ROBERTS Emily Nicole Roberts lives with cerebral palsy. She is a wheelchair user and disability activist from Swansea, South Wales and her main aim is to change lives by sharing videos of hers on YouTube.
You are enough because you are you. The truth is, there are billions of people on this planet but the universe chose you to be here, and guess what? There’s only one you so, I think you’re pretty awesome! You have made it through every single tough day because you are tougher.
I hope to keep making videos until I change as many lives as I can. I know that whatever you put your mind to, you will achieve too. Please, just accept yourself. You can read Emily’s blog at emilynicoleroberts.com or follow her on Instagram at @emilynicoleroberts.
hen I was 13, I trawled the internet for videos to guide me on getting dressed, exercising, and transferring; truly just to find advice on life and adapting to an un-adapted world. Sadly, I came up with nothing. My feelings of being lost increased, along with the incorrect notion of not belonging at all. I decided that disability was seemingly only recognised by the wider world for comedy or sporting purposes. I’m not funny, sporty or Stephen Hawking. What about just being normal? My self-esteem, even two years ago was non-existent. I wanted to be anything other than who I was. Until I bought a budget camera and tripod (because I never normally stick to things) and, decided to be the person that I needed when I was younger, once and for all. Fast forward a year, and I now realise that my cerebral palsy is life-changing, not life-limiting. If someone asked the question: “If I waved a magic wand, would you change anything?” My answer would be: not at all. My situation, pardon the pun here, allows me to stand out from the crowd. It enables me to be who I am. To pick up my camera and speak for those people, fight for those people, who may not otherwise be heard. Heck, I have only been given this opportunity as a result of my CP, so, how could I be anything other than grateful for that?
Accessful FOUNDATION THE
BY ROSALIND TULLOCH Meet the organisation looking to help you succeed
aunched in January, The Accessful Foundation, has been created to support disabled entrepreneurs. This user-led foundation aims to help disabled people succeed in their entrepreneurial endeavours by providing support and networking opportunities through webinars, mentoring, funding and grants. We caught up with CEO Jack Pridmore to find out more about what the organisation can do for disabled business owners and entrepreneurs.
WHERE DID THE IDEA FOR THE FOUNDATION COME FROM?
As an organisation for disabled people, by disabled people - we are acutely aware of the issues facing disabled people around employment, and self-employment. We know that many disabled people miss out on schooling and work experience due to health issues or, more often, inaccessibility of organisations like universities and employers. We want to be part of a solution here. Therefore, we have created a space for networking opportunities, like our webinars and online events. We also knew for the same lack of accessible opportunity reasons, that many may miss out on someone that can act as a professional mentor, so wanted to address this, and lastly we know disabled people are more likely to be in poverty and financial hardship - so offering grants to realise ambitions was an important aim. I, myself, have always been entrepreneurial and have run and founded businesses and have come up against significant barriers due to society’s inaccessibility. We want to be an organisation that exists to make bridges for disabled people in the UK to be able to access selfemployment, business ownership and professional development in a straightforward, person-specific way.
WHAT IS THE AIM OF THE FOUNDATION? The Accessful Foundation exists to promote disabled entrepreneurialism and the creative nature of our community. We want to help create great representation in the business world for disabled people. We also want to be able to impact people personally, by using their own measures of success. We are not here to tell someone what
success looks like, we want them to tell us how they view success and work to help them make that reality. If someone wants to create employment that is ‘only’ steady and sustainable, rather than growing and increasing, that is absolutely fine! If it removes barriers for the beneficiary, that is great for us. We don’t need to be a part of creating million-pound businesses, but we do want to be a part of creating businesses of high personal value to the beneficiary, using their own metrics of success.
WHAT FORMS OF SUPPORT WILL YOU BE OFFERING DISABLED ENTREPRENEURS?
Alongside promoting disabled entrepreneurialism, we support people by networking events online (and eventually accessible events offline too), by a one-to-one mentoring programme teaming up a current or aspiring disabled entrepreneur with quality, personable mentors - and by giving grants to help fund projects. That might be a grant for an accredited course, it may be to market a product or create a website, it might be for equipment, like an oven for an at home baker. This, like the rest of the way we work, will be unique to the person.
HOW HAS THE LAUNCH MONTH IN JANUARY BEEN? HAVE YOU HAD A LOT OF INTEREST TO BE ON THE BOARD OF TRUSTEES? We have been so humbled by the response to our advert for people to join our Board of Trustees! In part, I think this successful call has been supported by the fact our setup is friendly for disabled people. For one, our trustees work remotely. This was agreed before COVID-19, and will continue after. We also have measures in place to take into account that we have disabled staff and volunteers, so sometimes health will come first. We encourage that. Trustees join us in the knowledge that they are, although very committed, able to have a period of up to six months off if needed before we even consider adding another trustee in. They wouldn’t even lose their position in that scenario, we just always keep at least a vacancy on our board to increase the number by one, should it be needed to allow trustees periods to focus entirely on their health.
positions, we will be advertising again soon enough and are actively seeking volunteers. Again, we do this uniquely, so we will always try to find volunteering opportunities that suit you. If anyone has an interest in getting involved, I encourage them to email us and let’s have a chat! You can find out more about the organisation at accessfulfoundation.org.uk or you can follow them on Twitter @TheAccessfulFund.
Although by the time this is public we will have filled those
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WORDS BY JANE HATTON
USE YOUR PERSONALITY
have recently been through a recruitment process and taken on two new employees. It is always difficult – I wanted to employ all of the candidates, and hated rejecting the really good ones! I was reminded of one of my personal recruitment principles – recruit for attitude and train for skills. I suspect most recruiters do this, even if they aren’t aware they are doing it. It is easy to train people in new skills, but almost impossible to change people’s attitudes. For example, let’s say I wanted to appoint someone to use a particular piece of equipment. Candidate A has been using similar equipment for a number of years. Candidate B has never used this equipment before, and would need to be trained to use it. The obvious successful candidate is candidate A. Let’s say I have a bit more information about these two candidates. It turns out that candidate A is a bit lazy, and makes many mistakes. They often turn up late without any explanation, and rarely complete their work when they say they will. Candidate B, on the other hand, is punctual, conscientious, learns quickly and is always reliable and keen to do the best work they possibly can. Now which seems the more attractive candidate? I would be more tempted
by candidate B – I can easily teach them how to use the equipment and they will be a conscientious and loyal employee. I might not have to train candidate A, but it looks like they might cause problems all the time. When we are looking for work, of course we have to think about our skills, qualifications and experience. But it is important also to think about any personality traits that might be attractive to an employer. These can be mentioned on your CV, and certainly brought out at interview. In my recent round of recruitment, the best candidate on paper (i.e. the most impressive CV) turned out to be the least attractive candidate at interview. The person sounded very negative, and asked lots of questions which started with “I wouldn’t want to …….” – it sounded like they really didn’t want the job at all! Another candidate, who had very little experience in the field I was looking for showed initiative and enthusiasm, and had really done their homework and research on my company. Much more impressive. The two people I did take on had all the skills I was looking for, and they had also shown lots of enthusiasm for the role and the company, and seemed keen to learn, and be flexible. What personality traits do you have that might be attractive to an employer? Enthusiasm? Reliability? Flexibility? A willingness to learn? The ability to get on with people? A positive outlook? All these things can be just as valuable as qualifications and experience, if not more so. Make sure your prospective employer knows about them. For further tips, and jobs from inclusive employers who are looking to attract more disabled candidates, have a look on the Evenbreak website: evenbreak.co.uk.
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