Adapting to adventure
24/11/2018 News | Blog
Scouting in a wheelchair is easier than you might think. Here, two Scouts talk about the small changes that made a big difference to their Scouting experiences, and explain why we need to encourage more people to have adventures on their own terms.
Words: Aimee-lee Abraham | Pictures: Gavin Roberts and Francessca Jones
Finn Eyles, 13, is Assistant Patrol Leader at the 8th Winchester Scout Group. Although he was born with a genetic condition called Spinal Muscular Atrophy (Type 2) and uses a wheelchair to get around, he’s one of the most active Scouts in the District. He excels in precisely the sorts of things that you might not necessarily expect in a person with a disability, from archery to bivvy-building to firelighting.
His mum and dad, Lou and Andy Eyles, initially joined Scouting to give him some extra support. But, they say, they immediately ‘got hooked’ themselves and soon became joint Assistant Scout Leaders. They’ve now all been Scouting as a family for two years.
Does having Spinal Atrophy affect you much as a Scout? Is there anything you have to think about or do a bit differently?
Lou: Finn is pretty independent and plays a big role in the Group, but if he’s doing something where some strength is needed, that’s when he needs some extra help.
Finn: Yeah, that’s when I need more support, but I can do nearly all of the activities on offer and I have a lot of hobbies. It’s only occasionally I’ll need to avoid something at Scouts. If there’s a hike at nighttime when there’s low visibility, for example – that would be more difficult for me than it is for other people. But I can really do a lot!
You’re all still relatively new to Scouts. What drew you to join?
Lou: It was a bit unexpected. A leap of faith, really. Finn’s Dad and I were sat up late one night, reminiscing about camping and other outdoor activities we enjoyed as kids. At first, we weren’t sure whether Scouting was going to be beneficial for Finn. We didn’t want to set him up for disappointment. We didn’t want to introduce him to all these new and fun things that ultimately he might not be able to do. We decided to try it and see.
Finn: Yeah, we just decided to give it a go one day and we really liked it. I really like all of the survival skills; the camping and the firelighting. That’s what kept me doing it. It’s stuff I wouldn’t get to do at school.
What sort of adjustments do you have to make, as a family and as a Scout Group?
Lou: Whenever the Group goes on camps, we let them get their more challenging day-long hikes out of the way, and join in from the next day onwards. That usually works out well. Overall, we’ve found that some people can naturally adapt activities, while others need more help understanding how something can be tweaked.
Can you think of any specific examples, where an activity you previously couldn’t do has been made more accessible?
Lou: When Finn signed up to do archery at the Scout Activity Centre in Pinset, he hadn’t been at Scouts for long and we weren’t sure what to expect. We really wanted him to take part, but there was just no way he could pull a bow string back, due to difficulty with his core strength. I visited the centre to let them know about the situation and, unbeknowst to us, the team took it upon themselves to make Finn a bow stand from scratch. It was made out of bits of scaffolding and scrap materials, and it completely opened up a new sport to Finn. By the end of our sessions, he’d gained his Master at Arms Badge, and now he loves archery, which he would never have tried otherwise. It was a simple gesture, really, but it was so kind. It’s always worth firing off a quick email to whoever is in charge of an activity or camp. As Finn has said, there’s usually a solution, and if people know what they might need to do differently, they can be better prepared.
Finn: I loved doing the archery! I’m working towards my Chief Scout’s Gold Award, and I’ve only got one more Challenge Award to complete for it. I really like the survival badge, too.
Lou: The survival stuff has been so much fun to
complete. Another great memory for me is when we went on one of the County survival weekends. Do you remember that, Finn?
Finn: Yeah, that was great.
Lou: Everyone had to sleep outside in a bivvy. The other Scouts had these tiny, low-hanging shelters, but we had to work together in extreme weather to build a giant one for Finn, to accommodate the height of his wheelchair. I remember sitting there, watching him having a brilliant time, and thinking, ‘this is exactly the sort of thing you don’t expect a disabled person to do’. He was just absolutely roughing it and having the best time. You make all these memories in Scouting.
Finn: It’s the sort of thing you never normally do, apart from when you’re at Scouts. We went on a hike near Gloucester last year. That was one of my favourite things we’ve tried, because we got to look over at the Black Mountains in Wales when we reached the top. We had lots of fun and all the young leaders were helping to manually push me when it got hard.
Lou: The team really rally together.
8th Winchester seems like a really tight-knit Group. Could you tell us a bit more about the fundraising you have been doing recently?
Finn: This year, we’ve been raising money as a Group so that I can hopefully get a new wheelchair. My current chair has been great, but we do lots of different activities as a family and at Scouts, and we’ve really pushed it to its limits by taking it to places that this type of wheelchair wouldn’t normally go. The new model has wheels that can be easily swapped and changed, so Mum won’t be constantly chasing after me, worried that I’ll topple over when I go too fast!
Lou: The chair we’d love to trial for Finn is the Magic Mobility Frontier V6. It’s easy to manoeuvre in tight spaces at school but robust, stable and powerful enough to cope with regular trips through the woods and on uneven terrain. Unfortunately, the chair is very expensive so, back in July, five of our leaders undertook a sponsored hike to walk 55 miles from Oxford to Winchester. When the walk was planned, they weren’t anticipating that an intense heatwave would hit the UK, sending temperatures over 30 degrees! But despite this, they managed to cover 30 miles on the first day and 25 on the second. They’ve raised over £5,000 for Finn so far.
Finn: The leaders and young leaders have been amazing! And the other Scouts have been brilliant, too. As well as the big hike, we’ve done lots of smaller fundraisers. One of them did an ice cream sale and the other did a cake sale. Everyone has joined in, which is really nice. Joining Scouts is the best thing we’ve done.
Finn’s fundraising quest is still underway. To donate to his new wheelchair fund, visit: uk.gofundme.com/finnsfund2018.
Lois Hill is a Cub leader at the 1st Weston Village Cub Scout Group in Weston-super-Mare. Though she has likely always had a condition called Ehlers-Danlos syndrome (EDS), she only became symptomatic after the birth of her first child.
EDS can affect different people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. In Lois’ case, it causes her to experience joint pain, fatigue and problems with several of her internal organs, which can result in her collapsing unexpectedly. She’s been using a wheelchair for six years, and has been Scouting for one year.
Despite using the chair, Lois is an active leader, and the Group tries to get outside as much as they can. Their favourite activities include hiking, walking on the beach, and ‘hosting big barbeques’.
One of the main barriers people face when they’re adapting to someone with additional needs is a lack of understanding. Are there any misconceptions people have about your condition or ability to participate?
Generally, I’ve found people in Scouting to be very welcoming, but some parents are a bit surprised when they first see me, purely because they’re probably not expecting to see a leader in a wheelchair. I’m sure some even felt a bit apprehensive about it at first. They might worry about my ability to look after their children because of my additional needs.
But once they’ve spent time with me, they realise that’s not the case, and they don’t think anything of it. I’ve got the support of my husband, who joins me at Scouts and is also my carer. Although I do most of the work myself, he can support me in my role, which is a big help.
Are there any new skills you’ve gained at Scouts that you perhaps wouldn’t have otherwise?
I think the main benefit has been gaining confidence and building new friendships. I can’t work because my condition means I can collapse at any time, so I didn’t get many opportunities to meet new people before I joined Scouts. I’m more active since I became a volunteer. It forces you to get out there and do things, doesn’t it? My first camp was with the whole District. There were about 600 people there, so I jumped into the deep end pretty quickly. Generally, we try to get outside and be social as much as we can.
Are the young people in your Group aware of your condition and how it affects you? How do you talk to them about it?
They are aware, but we don’t often need to talk about it. Something I find really lovely is that the Beavers, Cubs and Scouts have never even questioned me or my condition. They understand I have good days and bad days and have only ever known me as I am. They just see me as me.
Do any of the young people in the Group have their own additonal needs?
Although we don’t have any young people with additional physical needs in the Group, there are some young people who have non-physical additional needs, such as ADHD and Autism. While they’re learning about my needs and adapting to them, I’m also adapting to theirs. The changes I make tend to be quite simple; things like making sure that young people who find it difficult to enjoy unstructured time always have something to do, and get extra reassurance whenever we plan to try new and unexpected things. We get to learn together.
Do you need to adapt your Scouting very often?
The days aren’t always great for me but the evenings tend to be better, so it’s nice to have the routine of going to Scouts one night a week. It’s the right amount of challenge. Being a leader keeps me busy preparing Programme activities during the evenings in-between, and it’s a nice regular activity we can enjoy as a family. My son is in my Cub Group and my daughter is a Beaver.
Generally, I’m able to participate in most Scouting activities, but there will be times when I need extra support. I had one episode on camp when I felt unwell and had to go and lie down for a bit, but the other leaders immediately gathered around and helped. You don’t always get that same sense of connection in other group situations. The people I’ve met through Scouting are very understanding and quick to jump in if I need them to share the load with me. Knowing I can rely on them is great.