21 minute read
KIDS’ CORNER
Kids’
CORNER
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We’ve said it before, but there’s nothing quite like seeing yourself represented in the media you consume. It’s something that our columnist Dan
White has done tirelessly in his work, be it in this magazine or in his own
Department of Ability comics, which sees a team of disabled superheroes taking names and kicking you-knowwhat. The latest step in his multihyphenate journey sees him take up the mantle of children’s author, and he spoke with editor Ros about his new children’s books that tackle subjects like hospital visits and climate change, and his reasons behind writing them.
You can read the full interview on page 49, and Dan’s regular column on page 60.
On page 59, this issue’s Future
Voices contributor Zan Godden wrote a beautiful piece reflecting on their relationship with their bodily autonomy, and the path to acceptance. Our article on page 62 tells you everything you’ll ever need to know about the fantastic charity
Gympanzees and their campaign to open a permanent facility in Bristol, and of course, products are on page 56.
If there’s anything you’d like to see included in the magazine, please don’t hesitate to email us at Katie@2APublishing.co.uk.
PRODUCTS
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This was the start of an incredible journey that has seen Dan and his family fighting for inclusion for all of the disabled families across the UK. It has also brought him to this new chapter of his life where he is fulfilling a long-term dream of writing children’s books.
When Pearson Publishing reached out and asked Dan to pitch some children’s books to be included as part of their Bug Club Family, that were more inclusive and diverse, he jumped at the chance. He has written a series of three story books called Brook’s Boredom Busters, and two non-fiction books, and here he explains what these books are all about: “I initially wanted to do this, but I didn’t want to repeat the mantra of most publishers, which was to go into in-depth detail explaining what disability is, how it affects people, what people can do. I wanted this purely to be a book with a girl in a wheelchair showing a physical disability and that’s it - a bit like Department of Ability. These books are to help children learn to read and also give them a little bit of subconscious inclusivity on the side. Brook is a central character, and I’ve done three books, they are called Brook’s Boredom Busters.
“The first one is about Brook and she is given a telescope by her dad because Brook gets bored very easily and she wants to imagine what it would be like to go to another planet because it might be more fun there, there might be more stuff to do so she imagines herself looking through her telescope, going to the moon, playing with the moon people, floating over craters, going up and down the moon mountains.
“She does all of this on the moon but she suddenly realises that she would be quite lonely and she would miss her friends, so she manages to go back down to Earth again and then I have some wonderful images of her running over her dad’s foot, splashing through mud, getting her wheelchair caked in mud, just doing all the sorts of things any other child would do. None of this clinical stuff - someone pushing her down a hill, I was quite passionate on the images I wanted to show, I didn’t want any stereotypical images, I wanted to show that children with a disability like to get into a rut, they like to get messy, they like to be a pain in the bum effectively, all these sorts of things. “The second one, Brook and the History Book, is the one I am really proud of, in which Brook goes to school, she is looking through history books and there are no disabled characters in there from history. So, she invents a time machine and goes and visits three characters from history who have a disability and brings them back to school and then writes her own book on historical disabled figures, it’s really fun and really colourful with the time machine and meeting these figures in the past.
“The last one, Brook and Farook, I wanted to do this because I wanted to show the side that life with a disability isn’t all doom and gloom. This young lad Farook who meets Brook at a hospital, has broken his leg and he can’t get used to life in a wheelchair and Brook says “you can still do loads of good stuff in a wheelchair”. There is a wonderful image in there of them going downhill in their wheelchairs full pelt and I said to the illustrator I don’t want any parent pushing them down that hill, I want a steep hill and I want them going down there on their own full pelt – which they did. There are things like that within the book, Brook can still go swimming, Brook still plays with her friends, Brook still plays football, Brook can still do all the dangerous stuff she used to, she teaches Farook that it’s no different, and they build up this relationship by the end of the book and they are best friends by the end of it.”
The first non-fiction book is called Off to Hospital and it is a thoughtful guide to help children who are going into hospital for an operation: “I wanted to show children and talk them through the process of going to the hospital, meeting the nurse, meeting the anaesthetist, meeting the doctor, what’s going to happen when you get into the theatre, what’s going to happen when you come out, because all these sorts of things are never discussed and I wanted to have a disabled character central to it who is saying ‘look I have done this loads of times, I’ve had loads of operations, let me tell you what happens when you get to the hospital’.” The second non-fiction book is all about climate change and is designed to encourage children be more ecologically minded, and this is also led by a disabled character.
When asked if the character Brook was based on anyone we might know, Dan commented: “I suppose you could say she is based on Emily, especially with that devil-may-care attitude!” “It is predominantly based on her, but she would have killed me if I had named the character after her, because she is a teenager and doing the obligatory grumpiness!” The process of writing books for most would be a daunting and lengthy process, but Dan explains that his passion to do this has been there for a long time, which helped enormously when putting pen to paper: “Creativity wise it is something I have always wanted to do, so the writing was there and it just spilled out of me onto the page. I probably had the pictures in my head before I had the words down. I got through two laptops doing this! “It was something I always wanted to do because it was something I was always told at school that writing was something I would never do. To literally have written books that will be seen by children and be read by children, that will be published, is not only something I’m very proud of, but I just really hope that children across the country will enjoy reading these slightly insane adventures of Brook. I hope it will also take a little bit of fear out of the process of going to hospital and also encourage them to be a bit more ecologically minded when they read the Go Green book.”
These books are being distributed through schools across the country, and Dan is also working on another series of books for Ladybird that are all based around disabled characters. We will also be seeing a comeback of the incredible Department of Ability in the future, so watch this space! You can explore Pearson’s Bug Club range of books at:
pearson.com/international-schools/british-curriculum/ primary-curriculum/bug-club-family.html
done either solo, by sharing the fun in a team relay, or Superheroes could recruit Sidekick teammates to tow, push and pull them around the entire course. The event once again included the ever-popular Celebrity Superhero Tri, where Superheroes have been randomly chosen to unite with stars from sport and screen for a super-fun relay race. Celebrities who took part this year included TV presenter and Great British Bake-Off Christmas special winner Briony May Williams, comedian and TV presenter Alex Brooker and Paralympic champion Richard Whitehead. mass-participation sports events where people with disabilities – ‘Superheroes’ – call the shots and don’t have to worry about cut-off times or equipment restrictions. The event wouldn’t be possible without the support of many individuals and organisations, including adaptive bicycle specialists Quest. Quest was delighted to once again support the latest Superheroes Series event by having a team on hand to lend various cycles to people to help them compete, and carry out repairs and maintenance for anyone that needed assistance during the event.
Rob Henshaw, managing director at Quest commented: “We were delighted to once again be part of this fantastic event. Sophia has created something which is totally unique, and it was an honour to be part of it and offer our expertise and bikes to many participants during the day. We are already looking forward to the Winter Wonderwheels event in December.”
Paralympian and Superhero Series founder Sophia Warner commented: “I am so grateful to Rob and the team at Quest along with all our other supporters for helping us make this year’s event such a great success. I was absolutely thrilled that we were able to bring back the Superhero Tri with our first real-life event in three years. Not everyone who has a disability wants to be a Paralympian and I wanted to create a unique sporting event where people with all kinds of disabilities feel part of a strong community and, crucially, where they can feel confident, they’ll be part of the majority rather than the minority. As the UK slowly recovers from the pandemic, many people with disabilities still feel vulnerable and have had a tough time over the last two years. This sporting event will showcase what’s possible when we come together as a society and lift each other up.” Kyrby Brown works for Quest 88 as an adaptive sports business development officer for the South West and South Wales and was delighted to take part in this year’s event. What sets Kyrby apart from her fellow employees is that she is also a loyal Quest customer and the proud owner of a Storm Runner running frame. Kyrby was born with arthrogryposis multiplex congenita which affects her entire body resulting in a very limited range of movement in all her limbs, which in turn affects her level of mobility.
Alex Brooker and Clare Balding
Marvel lent the power of its Superhero characters and storytelling to make the day even more epic for all participants taking part. Offering the perfect partner for the day it was all about inspiring participants to unlock their inner superpowers, Marvel bought along the epic energy of its iconic Superhero characters Spiderman and Black Widow to the event.
As the UK’s one and only disability mass participation sports series, the Superhero Series has a simple mission: to create fun, full-throttle
“The Superhero Series is an event that generates an overwhelming feeling of accomplishment, and it is incredibly rewarding and humbling to be involved. Triathlon in general is a real test of human spirit and physical fitness. To undertake Tri training as an abled-bodied person is quite a feat, to do it when you have additional needs takes determination and grit. The best thing about the Superhero Series Tri is that everyone is there to challenge themselves and that creates a very unique environment. As an ex-sportsperson I am used to a competitive environment, and this sometimes leads to pressure and tension. At Superhero Series you are only competing against yourself and that creates a feeling of genuine camaraderie between participants. “I took part in the Half Tri alongside working to support others with equipment as part of the team at Quest. I was lucky to have many of my clients taking part which made me feel uniquely invested. Whilst I enjoyed challenging myself with the distances, I think I enjoyed seeing and cheering on people that I have helped even more. However, I did manage both the cycle and run on my running frame and completed this in under an hour which I was really pleased with. It is very rare that you
Quest Team
come across an event that’s truly inclusive but somehow Superhero Series manages this. I very much look forward to seeing more familiar faces at the Winter Wonderwheels event in December and next year’s Tri. Anyone who knows me knows that I love to break down barriers and that’s exactly what the team at Superhero Series are doing to an exceptional standard,” explained Kyrby. Bartholomew Gee also took part in the event, which was his 4th Tri Series, and completed the 750m swim, 20km cycle and 5km walk in 3hrs 50mins. “In previous years I used a handcycle, but in May this year I took delivery of a Hase Trigo recumbent trike from Quest which they specially adapted to suit my needs. I was able to cycle a lot faster on this trike and completed the cycle stage 40 minutes quicker than my previous best time. I really enjoy riding the trike and I’m hoping to continue to improve as I get used to it and hope to beat my time next year,” commented Bart.
Winter Wonderwheels will take place on 4 December 2022 at Dorney Lake, Windsor. For more information or to book a place visit SuperheroSeries.co.uk, email Hello@SuperheroSeries.co.uk or call 01306 627 301.
For more information on the full range of therapy, rehabilitation and adaptive sports and cycling solutions available from Quest, advice on funding or to arrange an assessment please call 01952 463 050, email Sales@Quest88.com or visit Quest88.com.
Gonge Floor Surfer
This floor surfer board is a great way to allow kids to have fun while also working on their gross motor skills, balance and coordination. Developed in partnership with children’s physiotherapists, the floor surfer combines function, safety and design, while still allowing children to explore their surroundings and have fun.
0345 120 2055 Hope-Education.co.uk
Prices from £82.49
SENSORY FEELY TUBS
Designed to perfectly conceal items for kids to reach in and feel around before guessing what it is. This set of four colourful soft tubs will encourage your kids to delve in with their hands and use their sense of touch to identify the object being hidden inside. A fun game for a rainy afternoon, and a great way to explore their sense of touch.
0800 138 1370 TTS-Group.co.uk Prices from £22.99
SPECIALIST CAR SEAT
The Baffin 1 Car Seat has been designed to offer children as much support and adjustment as possible to ensure they can achieve the optimum postural support and positioning when travelling in a car. It features a rotating platform for ease of getting in and out of the car and the it boasts fully adjustable footrests, backrest and it has side supports too.
01788 892 056 Baffin.co.uk Prices available on request
FUTURE VOICES
Each issue we will be shining a light on a young disabled person who is blazing their own trail. Whether that be campaigning for access, giving up their time to help their community, achieving success in the sporting or arts arena, or educating their peers on disability.
There is pressure to show ourselves as disabled and thriving. We hate being pitied, and especially don’t like being infantilised. Yet it’s so hard to admit when we are struggling, lest we fall into these stereotypes. In these moments, I come back to Alison Kafer’s political model of disability, introduced in her book Feminist Queer Crip. Whilst the social model has been vital in examining how societal barriers shape the disabled experience, it overlooks the disabling effects of our impairments. For example, a wheelchair user can be frustrated at an inaccessible building and simultaneously desire to be cured of the chronic pain causing them to use said mobility aid. The political model allows us to be kind to ourselves in showing that it is normal to want to alleviate the debilitating effects of disability. This, alongside the grief model, has drastically improved my relationship with my disabled body. ZAN GODDEN Although I’m not there yet, I hope someday I arrive at acceptance for who I am now, not what I once was. Grief is multifaceted and can hit us when we least expect it; so if you find yourself mourning your body, you’re valid – keep Zan Godden is passionate about disability, mental going.
health, and LGBTQ advocacy. You’ll find them admiring birds, watching drag videos and battling fatigue spells at @ZanSaysStuff.
Disabled people are used to losing things: our rights and independence are frequently ripped from us, and while much of this can be attributed to archaic attitudes to social difference, there is no shame in mourning the loss of our bodily autonomy. The recent period of national mourning forced us to reflect on what we’ve lost. For myself, I’d grieved for my former body. The person who’d go on multiple nights out, who could read a book per week, or who would complete numerous chores in a day. My day-to-day itinerary with CFS/ME differs vastly from four years ago when my symptoms first appeared. In my mood tracker app, I’d constantly rank myself as “unproductive” if I couldn’t finish what I’d planned for that day - confined to my couch with a fatigue spell when I ‘should’ have been washing up or completing that cross stitch. I was overwhelmed with shame, longing for days when I could do everything all at once.
Most of us are familiar with the five stages of grief: denial, anger, bargaining, depression, and acceptance. During counselling, my therapist used this model to reframe my feelings toward my disabilities. It was a lightbulb moment realising I’d been mourning for myself. I was denying my limitations, pushing myself to complete tasks, and getting frustrated when I couldn’t tick off my to-do list; my internalised ideas of productivity had been warped by my former body. Why had I fought for years to prove I was unwell, only to treat myself unkindly when my CFS/ME restricted me?
DAN WHITE
COLUMNIST
Follow Dan on Twitter @Danwhite1972
Dan White, creator of the amazing Department of Ability superheroes and dad to Emily, who is 16 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.
SURVIVING THE FIGHT
It is a worrying time for us all. Fuel bills are rising and food along with it. There is also the issue of benefits stagnating, meaning for disabled people and carers the gap between income and expenditure is virtually now unattainable. Indeed, trying to maintain my daughter’s health while this poverty crisis escalates is a juggling act like no other, so my regular column this month is more of a resource than a comment. daughter’s ceiling track hoist, ventilator and powered wheelchair draw masses of power, and this is repeated ad infinitum across the community, with other life-affirming equipment too numerous to list. Energy firms do however offer a few support packages to parents, families and individuals, and while I cannot wave a magic wand (as I continue to meet with Ofgem to fight our corner) I can hopefully point in some helpful directions. Seek out the Priority Services Register which is a free support service to help people in vulnerable situations. All energy suppliers and network operators offer it and each one keeps their own register. You need to contact your energy supplier or network operator to get on it and you can if you are disabled, have a long-term medical condition, or have young children.
There is also the Warm Home Discount (WHD) which requires domestic energy suppliers to deliver support to persons on low-incomes and who are vulnerable to cold-related illness or living in fuel poverty, which as we know is predominately disabled people and carers. In any instance I cannot emphasise enough to get in touch with your energy supplier right away if you are in crisis, please do not sit in silence, they may seem like heartless money vacuums, but they do have a duty of care. Also please check you are in receipt of the £150 extra fuel payment which should have landed in September, and find out your eligibility for the £650 one off payment. For carers especially, the solutions offered by the new PM could be described as non-existent, but there are things out there that can prove useful. There is a website called DiscountsForCarers.com that offer discounts for all carers, paid or unpaid, plus vouchers and money off travel, brands and more, and it extends to the carers family as well. Also, please apply
As one of the leads of the newly formed Disability Poverty Campaign Group (DPCG) I was hoping not to write about this again, but I am receiving so many cries for help via social media and email on the costof-living crisis, that I thought I must continue to speak up via any avenue open to me – as a writer, broadcaster and columnist, to help in anyway, so here goes.
Let’s start with the biggest issue: energy. The energy cap was £1,277 in the winter of 2021 and that went up to £1,977 in April 2022. This means that the cap of £2,500 is double the energy price of last winter and our community uses more energy than any other. My
to your local council to ask for direct payments which can give the carer a break or ask for carer direct payments which, on receipt, can employ a care worker or personal assistant to help with day-to-day needs or even for a period of respite care. If you’re caring unpaid, check to see if you can claim a carers allowance. Remember councils and the DWP have provisions to help which they do not shout about, call them or get a representative to call them – ask, ask, ask.
Benefits are another area. It is a repeated falsehood by the state that benefits cost too much, there is often too much government hyperbole. The reality is benefits are there to help and at the time of writing there is currently £16 billion of unclaimed benefits lying around, the money is there, so get claiming. Check to make sure you are entitled to and claiming all the benefits you are eligible for - Personal Independence Payments (PIP), Disability Living Allowance (DLA), Employment and Support Allowance (ESA), carers allowance - if in doubt, go to the Citizens Advice Bureau or the excellent Turn2us.org.uk website, or purchase the Disability Rights UK handbook from their website with a full guide to benefits and services, help is available.
The fight to end poverty continues outside these pages. Currently at the DPCG we are pushing on all fronts. Our letter to the PM and our policy statement are pushing for a matching inflation rise in all benefits now, not next April, (the money is there remember), and to reform the benefit system to make the process easier, faster, and far more supportive for starters.
I know I may be telling many how to suck eggs here, but knowledge is power and anything I can do and suggest that helps, is a win. I will do anything that allows me to continue to give my daughter the quality of life she unequivocally deserves and I know as readers you will be doing the same for your family members.
