26 minute read
WELLBEING WEDNESDAYS
Euan’s Guide share some top tips from their Ambassador Network to ensure you are looking after your own wellbeing
There’s no doubt this has been a challenging year for us all with moments where we needed that extra bit of motivation or support from one another. Sometimes a message, a new idea or suggestion can make all the difference on days you’re needing an extra boost.
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The Euan’s Guide Ambassador Network is a small yet mighty group of Euan’s Guide Volunteers that help us make the world more accessible one review at a time. To help support one another, our Ambassadors have been sharing their top tips and tricks for looking after their wellbeing as part of a Wellbeing Wednesday programme. Every second Wednesday, we pose a wellbeing question, and our Ambassadors share their advice and suggestions. By creating a wealth of wellbeing tips, and tricks, we hope to create a resource for those days that need an extra bit of motivation or for trying something new. Here is a summary of our topics and tips to date:
How do you take time to relax?
Limit screen time in the evening to help you wind down.
Play a board game, do a crossword, read a book or listen to an audiobook. It’s important to find time in the day to switch off and doing this in the evening can make a big difference to the quality of your sleep.
Spend time with nature. Whether that’s sitting in your garden, at a local park or just looking out from your window. Get familiar with your local trees and plants, listen in, and see what wildlife you can hear and spend a few calming moments with nature – wherever you are!
Try some mindfulness and meditation to help you unwind. There are lots of guides out there to help you through the process. Doing it before you go to bed can help with sleep, and some of the techniques are useful to call on throughout the day at times when you may be feeling stressed or anxious.
How do you look after your mental health?
Exercise is key. Even just a little each day, it’s good to get moving and boost those endorphins.
Music can be a great way to look after your mental health, whether that’s playing an instrument or listening to songs. Create playlists to use in different scenarios as a mood booster, such as some pick-me-up tunes or calming sounds.
There’s nothing like a bit of fresh air. Even on days when the weather is miserable, a few breaths of fresh air at your window, front door or garden can do the world of good to help clear your head.
Daily journaling is a great way to reflect on the day and set goals for the days ahead. Having a ‘gratitude list’ or writing one positive thing that has happened each day can help at times if you’re feeling low.
Get creative! Try a bit of painting, crafting or anything that allows you to tune out and get those creative juices flowing. Keep a list of plans for projects you’d like to do for times you might need some extra motivation.
Set yourself goals for the week. Having these written on a list you can tick off helps with that sense of achievement.
How do you stay active, particularly since staying home?
Set prompts on your phone or watch to remind you
to move regularly through the day. It’s amazing the difference movement can do for your mood. Do some housework on days you don’t feel like exercising. Housework is a workout in itself, and you get the benefit of a sparkling, clean home! There are a wealth of videos online for home workouts, many don’t require any equipment. Do some exploring and find something that suits you and your abilities. If in doubt, put on some funky tunes, and dance it out! Have you taken up a new hobby that helps you look after your wellbeing? Virtual book clubs – a great way to read more books, meet new people to share and chat about the stories you’re all enjoying.
Cross stitching – a great way to keep your mind and hands active, while producing beautiful art.
Sketching and painting – a great way to get creative and tune out. The most important thing to remember is it doesn’t matter what your art may look like, but what you get out of doing it.
What do you do to be kind to yourself?
Take time to read an uplifting poem, story, or quote.
Keep a note of these for times you may be needing a boost.
Treat yourself from time to time. Whether that’s a slice of cake, takeaway night, a new book or home spa set up. It’s important to have little treats to look forward to throughout the week.
Allow yourself a break, a lie in or just some time to yourself. This time can help you re-charge and clear your head. It’s important to allow yourself this time or these treats without feeling guilty about it.
How do you stay connected with friends and family?
Write a letter or send a card. There’s nothing quite like the joy of receiving something in the post that isn’t a bill or junk mail. There are also online companies that can print and send a card for you for a small fee. You’ll have a glow knowing you’ve brightened up someone’s day and you never know, they might just return the favour!
Make sure you contact at least one person every day.
Whether that’s a quick phone call or a few texts. It’s important to check in with others regularly and keep in touch.
Set up regular calls with friends and family. If you’re running out of conversation, do a joint activity on the call. Share a recipe you both can make, do some crafting together or play an online game against each other and get their live reactions! Reach out to old friends. It can be a nice way to reconnect or reminisce on times gone by. You could set up a group chat with old school friends to share photographs and stories of your schooling days.
Let us know your wellbeing top tips and tricks on twitter @EuansGuide. To find out more about our fantastic Ambassador Network visit euansguide.com.
Inclusivity
S(M)ELLS
Globally-recognised personal care brand Unilever has announced it will bring a trial of its new inclusive deodorant to the UK later this year
Just like their slogan from the 90s, deodorant brand Sure haven’t let us down with the creation of an adaptive deodorant that has been built with accessibility in mind. The company have scheduled a trial of the brand-new prototype deodorant - called Sure Inclusive - to take place in August of this year, having been introduced to their audience in the United States in April under the brand name parent company Unilever uses in the country, Degree.
Knowing that one in five British people live with a disability, the company have sought to fill a gap in the beauty and personal care market where there is currently no product designed specifically for people who live with upper limb impairment. The company notes that some people might find using a twisting deodorant cap or pushing down on a spray difficult, and aimed to create something which had neither of these features.
Sure Inclusive’s packaging features a hooked design which has been optimised for use with one hand, and magnetic packaging to ensure the cap can be easily removed and replaced for users who live with vision impairment or reduced grip. Enhancing this is an hourglass-shaped body that can be used easily by people who live with a wide array of upper-body impairments, and a large roll-on applicator that helps coat a wider area in deodorant, meaning users will be less likely to have to perform multiple swipes. The cap also features a Braille label.
It’s important to note that these features could change and improve based on feedback Unilever receives during its trial, which will specifically seek out people living with disabilities in order to give vital assessment and critique of the product before it reaches the wider market. This information will be combined with the previous trials conducted with 200 people living with disabilities in the United States, and design input from occupational therapists, engineers, consultants, and design experts. Kathryn Swallow, global Sure brand vice president, said: “As a brand that’s committed to inspiring confidence in everyone to move more, Sure believes no one should be held back from experiencing the transformative benefits of movement. More than one billion people are estimated to live with some form of disability, yet products and experiences are still not designed with this community in mind. With Sure Inclusive we hope to inspire bold action across the industry to ensure that people with disabilities have an equal playing field.” “Breaking stereotypes unleashes creativity and drives growth. Sure Inclusive challenges what a deodorant product should be. It’s a breakthrough accessible design that genuinely serves the needs of people with visual impairment and upper limb motor disabilities,” said Aline Santos Farhat, EVP of global marketing and chief diversity and inclusion officer at Unilever.
Kids’
CORNER
Summer is here, and with it comes the need to find activities to keep our children occupied and having fun while they bask in the glory of the British summertime and all that carries with it. Incidentally, this might mean trying desperately to find some indoor activities that will keep our young ones occupied and out of the rain for a while.
Somewhat paradoxically, this is the perfect time to get children into swimming, but if you’re not entirely sure where to start with that, we’ve got some guidance on page 46 that will help you to find the nearest inclusive swimming lessons or club to get your kids up to scratch with a vitally important life skill. If swimming isn’t your children’s idea of a good time, what about dancing? Forward Thinking Movement and Dance are an inclusive performing arts group who offer classes to young people: you can read about it on page 48. We also caught up with Duncan Casburn, aka PDA Dad UK, who started a YouTube channel to promote a wider understanding of living with autism - read it on page 50. As ever, we have columns from Dan White and this month’s fantastic Future Voices contributor alongside a host of great products for younger people. If there’s anything you’d like to see included in our kids’ section, email ros@2apublishing.co.uk
PRODUCTS
pg52
STARFISH SCHOOL OF SWIMMING
Starfish run their swimming lessons in two pools in England - the Oulder Hill Leisure Centre and Castleton Pool. Their Rockhopper swimming lessons are specifically designed to teach children living with disabilities to feel safe and secure in the water. The programme has nine award levels, and aims to introduce children to the joys of being in water, with an aim to increase confidence and skills. They’re one of a limited number of swim schools in the northeast of England who boast trained and qualified staff that specialise in teaching children with additional needs to swim. Their instructors also have sign-along qualifications, and have achieved a foundation introduction in BSL. They’re happy to discuss any accommodation needs your child may have, and also have access to a hydrotherapy pool which has sensory aids. Starfish are members of the swimming teachers association (STA), and are fully insured through Swimsure.
starfishswim.uk
BARRY BEAVERS
Based in Barry, Wales, this swim club has been helping disabled people feel more confident and secure in water since 1981. They proudly use something called the Halliwick concept to provide instruction and direction to all of their swimmers; this holistic approach to teaching is designed to give people a better understanding of how their body moves within the water without the use of flotation aids, providing a natural understanding of buoyancy and hydrodynamics within a safe and controlled environment. The club is staffed by volunteers who are trained in the Halliwick concept, offering both one-on-one and group teaching, as well as swimming therapy and lots of fun. Swimmers at the club can take part in their proficiency badge scheme (but it’s not mandatory), and can also join in with swimming galas to compete against other swimming clubs in the region at their leisure.
barrybeavers.co.uk
LEVEL WATER
Level Water is the sole UK charity providing one-to-one swimming lessons to children living with disabilities. They aim to help disabled children develop confidence and independence in the water, and do so through calm, supportive lessons handled in a one-to-one teacher-pupil environment. Level Water say that this tutorage helps disabled children to join mainstream classes to further improve their swimming abilities, as well as support them in improving confidence, self-esteem and resilience. The charity considers children to be able to swim safely and independently once they’re able to perform a 15m front crawl and backstroke, two of the key styles of competitive swimming, they can move forward to group swimming lessons or join a competitive club. The charity currently operates in over 60 pools across the UK, and fund their swimming lessons through donations which are raised in charity swimming events. To learn more about Level Water or apply for lessons, contact them via their website.
levelwater.org
BY ROSALIND TULLOCH
Discover Forward Thinking Movement and Dance (FTM Dance), an inclusive performing arts group offering classes for young people with additional needs
Leanne Evans is the creator of the performing arts group and she was motivated by her own experiences of growing up alongside disabled family members. The idea for FTM Dance was borne out of a desire to help children and adults to understand the transformative power of dance. Thanks to the support of an inspiring childhood dance teacher and the financial backing of the Prince’s Trust, Leanne opened her first centre in Leicester in 2013 when she was just 23 and still studying at university. Due to her tireless ambition and drive, Leanne now has centres in Nottinghamshire and Leicestershire, and serves over 600 pupils. FTM Dance provides a fully inclusive environment, where children and young people can engage with social, fun and learning opportunities. It also provides much needed respite for parents and carers of disabled children, through weekday adult services, creative therapies and school holiday clubs. The centre’s support staff are highly skilled in a variety of areas, including enteral feeding, epilepsy, colostomy and moving and handling. The centres are also fully equipped with hoists, changing beds and more. FTM Dance delivers meaningful, high quality, regular performing arts sessions, activities and workshops using a person-centered approach and provides social inclusion through events in the local community.
What you can expect from the classes:
DANCE
The dance classes promote the preteens, teens and adults involved to engage in choreography and create their own performances, alongside learning specific techniques and genres if they wish too. The sessions for younger children promote turn taking, fine and gross motor skills, listening skills through dance-related activities and action-based songs, along with prop exploration.
MUSIC
In music, individuals have the opportunity to explore an array of instruments and create, rhythmic beats and more. They use paired and group work to promote team building skills, relationships and leadership. They also use solo work to facilitate an individual’s sense of identity and independence.
DRAMA
In drama, individuals have the opportunity to learn skills in ‘understanding the world’ drama pieces, alongside creating their own creative and imaginative drama pieces, alongside creating scenery and props.
Leanne understands the importance of providing regular classes for young disabled people to explore their unique abilities and unleash their creativity, and she recognises the lack of inclusive opportunities for young disabled people to attend.
“These children can do so much,” said Leanne. “Parents with non-disabled children think nothing of dropping their child off for a dance class. We wanted to give our children and young adults similar, regular support. “We also provide them with a performance focus, giving them a goal and ultimately a sense of achievement at the end. FTM’s students have performed at Disneyland, Demontfort Hall, the Curve Theatre and the renowned Leicester Caribbean Carnival. They shouldn’t be limited by their additional needs, but rather be allowed to explore their talents, and share them with the world.” FTM Dance has thankfully managed to operate throughout the pandemic. Its recreational offering quickly moved online providing interactive Zoom sessions, while the social care continued face-to-face, with full PPE for its most vulnerable families in small groups, with one-to-one support. “COVID and the lengthy lockdowns have had a significant impact on children across the board,” said Leanne, “but isolation is a pervasive problem for children with additional needs and for their parents too”. “Some are isolated because many services can’t, or don’t want to, meet their needs. Many are on borderline deprivation because of the high cost of raising a child with special needs. Food Banks are already a normal thing in the world we work in. Maybe COVID has made the mainstream population wake up to the massive social injustices in 2021 in the UK. It’s made everyone else feel what our families go through all the time.” Leanne’s amazing venture has grown quickly and she’s now a real success story, but her pride comes in looking at what her young students have achieved: “I love seeing them progress and grow. There is nothing more satisfying than seeing someone realise their potential, and the pride this gives both them and their families.” To find out more about the classes and services offered by FTM Dance visit ftmdance.co.uk.
ASensory SENSATION
BY ROSALIND TULLOCH
Duncan Casburn, aka PDA Dad UK, started a YouTube channel last year to help promote the understanding and acceptance of autism. He is the father of two beautiful kids, Curtis and Sienna, and Sienna lives with autism and pathological demand avoidance (PDA). Their most recent venture has seen Duncan and Sienna team up to offer reviews on sensory products, giving viewers the perspective from the child and the parent
We caught up with the father-daughter duo to find out more about the amazing work they are doing to support the autistic community. What made you start your YouTube channel?
I run a large Facebook group called The UK Autism Spectrum Parents Support Group. I noticed a lot of the same questions coming up over and over and was spending a lot of time researching for answers. I learned a lot, and in the end I thought I might as well put the research to good use, so I started PDA Dad UK. Later on, I was looking for people to collaborate with. I connected with Chris (@therealgrumpdad) and we started The Grumpy Dads - a more light-hearted look at the world, while also looking at serious issues. We’ve been stunned at the quality of guests we’ve had. This also led to The Grumpy Gits, which is with Simon Sansome (the author of the new The Bill series, Sun Hill) and Adam Pearson who won Celebrity Mastermind.
What do you enjoy most about creating these videos?
Having a valid platform that looks at generating accurate and positive information on parenting autism and PDA - indeed neurodiversity in general. I’m very privileged to know a number of autistic adults. Having the input of actually autistic people has been such a valuable insight into how to best support my daughter with her needs. I tackle some harder issues too, such as aggressive behaviours, but I try to remain respectful to my neurodiverse friends and bring it back to understanding the
root issues and how to support them. I’ve learned so much and it all helps me make my daughter’s tomorrow better than her today.
When did Sienna decide she wanted to be involved?
She’s been wanting to do something on YouTube for a long while, but I’ve been reluctant. I see some other channels (which I won’t name) who plaster their kids all over the place and I didn’t want to have her too exposed. But the idea came for specifically reviewing and testing sensory toys and tools, or products related to neurodiversity in general. My kids watch loads of toy reviews but I realised there’s nothing for the sensory specific. I asked her if she’d want to do it with me and she was so excited. We came up with the idea of her testing and reviewing from the autistic and child’s perspective, and then me reviewing as a parent.
Sienna, why did you want to get involved with product reviews?
I like watching unboxing on YouTube. Curtis (Sienna’s brother) watches Ryan and CKN Reviews all the time. I sometimes make my own on my iPad and asked Daddy if I could have a YouTube channel but he wouldn’t let me. Then he asked me if I want to help him and I said, “yes!”
Have you enjoyed unboxing and reviewing products?
DUNCAN: It’s been so nice being able to do something together like this. Sienna was my main inspiration for my Facebook group and my channel. Being able to involve her at a deeper level has been fantastic. SIENNA: I love it! Especially the Pop-it cos I’ve wanted one because my BFF has a few and I like playing with them.
How important do you think it is for young people with SEND to see these product reviews?
I think it’s important for both kids and parents alike. The unique thing we have with these reviews is that you get the raw reaction from Sienna and her thoughts about the product. But then you get the parents side from me, looking at the quality and the value and so on. For young people with SEND it’s especially good though, because from Sienna’s side they’re getting the opinions of a neurodiverse young person, not someone trying to understand the value from the outside.
Do you have plans for more?
We do. We’re hoping to have a review out once every week or two. If anyone has a product they’d like reviewed I’d love to hear from them too. My email is pdadaduk@gmail.com.
You can watch their videos on YouTube by searching ‘PDA Dad UK’ and you can follow Duncan on Twitter @pdadaduk.
FUTURE VOICES
the same dreams as anyone else. It might take us longer to do things, or we might need adaptations, but all we want is what everyone else has. It teaches that it’s okay to reach out, to ask questions (if that person says they don’t want to, you should respect that) or for help on how you become a better ally. In the documentary, there’s a brilliant quote from one of the counsellors who said: “We realised it wasn’t people with disabilities that needed to change, it was the rest of us”. Documentaries are a brilliant way to teach
Each issue we will be shining a light on a young disabled
history of any kind, and I believe disability
person who is blazing their own trail. Whether that be
history should be taught in schools. To
campaigning for access, giving up their time to help their
become a more inclusive society, we need
community, achieving success in the sporting or arts arena,
to start integrating these lessons into our
or educating their peers on disability.
children’s lives. Teaching these things as they grow up will help them to have a better understanding of the world. Putting authentic disabled characters on television not only helps MOLLY PEGLER disabled people see themselves, it helps others see them resulting in a better understanding of them. Molly is a passionate writer who runs a blog about We are all people, and at the end of the day, we all have TV and film from the perspective of a disabled dreams.
person, which has allowed her to write some fantastic stories and interview interesting people.
Shedding a much needed light into the disability rights movement, the Netflix documentary CripCamp: A Disability Revolution takes you on a journey through the history of Camp Jened (a summer camp for young disabled people in New York that closed in 2009) using interviews, whilst delving into unseen footage from real-life events, intertwined with archived footage. Hearing about the events first hand really makes you feel as if you were there. It was also really interesting to me to see how James Lebrecht (co-director and past camper at Camp Jened) spoke about his younger self. He knew he was sure of what he wanted: the chance to be creative and pave a way for disabled people in future generations. This urge resulted in him filming what was going on around him at a time when there were even fewer disabled filmmakers than there are now. At that point I don’t think he could have even begun to imagine that years later, he’d still be doing what he loves and using his archived footage to educate others.
At the time, he wouldn’t have realised, but by doing something he loved, Lebrecht was opening up new opportunities for disabled people, especially disabled filmmakers.
I saw much of myself in Lebrecht. I think many disabled people most likely would too. For me, it’s his drive for change, but also how he knows what he wants and finds a way to turn it into a reality. CripCamp really helps highlight that disabled people have
DAN WHITE
COLUMNIST
Follow Dan on Twitter @DeptOfAbility
Dan White, creator of the amazing Department of Ability superheroes and dad to Emily, who is 15 years old and has spina bifida, is a regular face in PosAbility, as he shares his experiences of life as a family with a disabled child.
THE TRUTH ABOUT CARING
As I write this, I am bathed in the glow of my laptop. It is 2:15am; the house is quiet. I am sitting in the lounge typing this as my beautiful disabled daughter sleeps next door. I can hear her oxygen machine whistling - a comforting reminder that it is doing its job of filling her lungs with air to counter her sleep apnoea. I know I am writing about care woes again to readers familiar to them, but in this instance, I would like this to be read by someone unfamiliar with our routines; who just doesn’t get what we do, who doesn’t understand, or want to know our reality. I would like this to be cut out and used as a weapon of words, kept in a wallet or a purse by you to be read or given to a naysayer, a disbeliever, with orders
to get enlightened about our care existence. Why? Because often we are disbelieved or accusations of a lazy life fly, and off the back of receiving a few of these, this column has arrived. I am writing this to strip away the stereotypes that have blighted carers and their families; I am writing this to non-carers who are unfamiliar or disbelieving of our existence, so please read on. Firstly, trying to put the responsibilities we carers have into words is like trying to nail jelly to a wall: near impossible. Ours is a relentless, 24-hour, neverending circuit of medication mixing and delivery; apprehension about machinery malfunction and tears; daily rounds of physiotherapy to prevent blood clots and all the hoisting and lifting. Then there are the multiple doctor appointments, specialist checkups, and operations. All this while trying to be a good parent, to cook, clean, wash, deliver counseling, and ignore the ever-growing pile of bills and paperwork designed to put you off claiming what is rightfully yours. When you think of a physiotherapist, a counsellor, a nurse, or GP, you know that their responsibility comes with a pay packet. That’s also true of the social worker, speech therapist, lawyer, behavioral expert, and teacher. All of these are considered separate professions, practiced by individuals who switch off at a given hour. We, however, take on all the above jobs daily, hourly – and we do so for £67.25 a week. We do all this for love and without a voice, without hope, without witness and without reward.
I just had to go in and see my daughter: she had woken up and removed her mask, needing urgent personal care. The lights were turned on and the wheelchair came in; oxygen machine quickly disconnected, bed wedges removed, and ceiling track hoist lowered. As she sat with her iPad, the clock ticked on to 3am. I return to my laptop: there is no doubt in my mind that I have to share this nightmare scenario with countless thousands across the country. Carers aged five to 80, all terrified to slip into slumber for fear of missing something urgent that could result in a panicked drive to A&E in floods of tears. This is our nighttime, as our daytime; lived with apprehension and the fear of our loved ones calling, but us not hearing. We carers live in a country with a social care problem, a stigma of disability, and for those of us living from hand to mouth, the fear for our children’s future when we are no longer around is a thought not permitted. This is a thread of fear throughout the caring community, the terror of a legacy of a systematic and seemingly deliberate lack of will to help us. The reality is that we do not dare think about our mortality, because if we do, what becomes of our children?
“So what do you want?” The uninformed recipient of this passed-on piece may now be asking. Well, carers need a decent benefit on par with the minimum wage. We need unlimited support from external services without financial restrictions, and most of all, we need a minister for carers who is answerable to us. Carers deserve recognition, for the world to open up and see our struggles, we don’t deserve our stereotyped views and I hope that you can see that.
