Tag Archives: spinal muscular atrophy

The football player who is representing England in the World Cup – Chris

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This story is part of 30 Under 30.

 

Chris has spinal muscular atrophy and from a young age has been playing powerchair football. With the sport constantly changing, Chris is gearing up to represent England in the Powerchair Football World Cup next year.

As part of 30 Under 30, he tells us how the sport has changed and why people should get involved.

I’ve always been football mad.

At school I was playing on my knees in goal, driving around on the floor until my muscles deteriorated. Then I got involved in wheelchair football. I was at secondary school and my P.E. teacher heard about trials that were going on at Aston Villa at the time. I’d never heard of the sport, never seen the sport played. So I got the afternoon off school, went down and had a look. I used to play by perching on the end of my seat and kicking a ball around in the garden with my brother so it was a bit of a shock when I arrived.

Back then it was a great big football and half a car tyre strapped onto the front of the wheelchairs. I actually burst out in tears. I was like “This isn’t football. I don’t want to play this.” It was more like bumper cars than football. But my dad was there and he encouraged me to give it a go. I fell in love with it and I’ve not stopped playing since.

Chris, a young disabled man in an electric wheelchair, smiles at the camera

The sport has massively changed since I started playing

There’s a national programme, there’s two national leagues with 12 teams in each and there’s regional leagues. Back when I started there was no real backing, we played in everyday wheelchairs so it was just whatever you could ‘bodge job’ up to play. It wasn’t very professional. But now we’ve got specific chairs for the sport, specific equipment and a national league structure behind it.

Rather than the car tyre on the front of the chair, we’ve got a clip on attachment that’s a solid metal structure that you use to knock the ball around. The ball itself has gone down to half the size.

It’s given the sport a whole new lease of life. It’s quicker, it’s more enjoyable to watch. The ball gets kicked around with a lot more power so a lot of people that are watching are pretty gobsmacked when we’re smashing the ball around the court.

The game has been taken to a different level.

Representing England

My first involvement with the England team was in 2011. It’s all performance based. The coaching staff are all involved in the league so they’re just scouting the team, scouting the players. Then you get invited across for trials. And you’re just hoping to keep receiving an email saying “we’re inviting you back for the next one” and I’ve been in the squad ever since.

There’s been three World Cups now and 10 competing teams in each so far, from other counties world-wide. There’s been a qualification process to getting in the World Cup whereas before it was if you wanted to and if you’ve got the finances to do it. So now, fingers crossed, next year will be the most competitive World Cup to date. We had to qualify through a European qualifier.

It’s not a Paralympic sport yet but in 10 years’ time, I hope it will be. That will give it the bit of extra profile it needs and the professionalism it needs. It will allow people to view it as an elite sport rather than just an opportunity. Lots of people around it just see it as “oh great my son or daughter gets to play”, instead of “my son or daughter could be a gold medallist”. Fingers crossed that happens.

Two disabled men in electric wheelchairs play a wheelchair football match

I would recommend it to anyone

At matches people can expect a lot of excitement. You get plenty of action. It’s kind of one of those sports that you have to see it to understand what it’s all about.

Fingers crossed, as it grows and we can open it up more to the general public, people will take a genuine interest and, fingers crossed, watch England win a World Cup.

I’ve always been quite a competitive person, so it gives me that opportunity to compete on a level playing field. Having the opportunity to grow as an athlete, being able to play in the World Cup and travel the world playing football, it’s been great. I would recommend it to anyone.

Chris is sharing his story as part of our 30 Under 30 campaign. We’ll be releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To find out more about powerchair football, visit the Wheelchair Football Association’s website.

“Football clubs need to think about disabled people” Kelly, the football club owner

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This story is part of 30 Under 30.

 

Kelly Perks-Bevington is an entrepreneur and business owner from the West Midlands who has spinal muscular atrophy type 3 and uses an electric wheelchair. 

As part of our 30 Under 30 campaign, she talks about getting into the world of work, her latest business venture and her aims of creating the most accessible football club in the country.

I wasn’t very studious at college so I was absolutely desperate to get straight into work. After loads of rejections, I got a job at a doctors surgery as a receptionist. It kind of lit a spark and made me think “I’ve got a path now”.

From there, I got a passion for being in the world of work. I applied to join a concierge company and I actually went on as an admin assistant there and worked my way up through the ranks until I had my own list of football clients.  This is where my lifestyle company, G5 Lifestyle, started.

Alongside my dad, I also run G5 Sports Consultancy LTD which we use as a vehicle for all of our crazy schemes. We have used it to consult into different football clubs on their practices and football business.

On the side of all this, I also run kellyperksbevington.com which is a portal for me to write blogs about things I’m passionate about. I really enjoy doing that and have had a lot of interest from big companies and media outlets recently, which is really exciting!

Kelly, a young woman, smiles while seated in a stand at a football stadium

Buying  a football club

My dad and I established the G5 business and then we went and bought Kidderminster Harriers Football Club.

It all kind of fell into place really nicely. My dad was in talks with the club for a while and the closer we got to it, the more we saw it as a viable business. My dad has been in the industry for 30 years and I’ve been in it for 10 so we’ve both got a pool of contacts that could be useful to the club.

We just wanted to get everything going in the right direction and make the club function more as a business. We also want to create ways to make money off the pitch as well as on the pitch to keep the club afloat. We’re trying a couple of different things like diversity projects, education projects, development on the ground and making the club more energy efficient.

The club is over 100 years old and we’re going to take it into a new era and get it functioning like a modern day football club should.

The fans have been really grateful as we put a significant amount of money in to secure the future of the club. We’ve had a lot of positive reactions which can’t always be expected as we’re making so many changes to something that people are used to. The response has been great from all the fans.

We’re starting a women’s football team, we had a diversity day with the Panjab FA and Jersey FA, and we’re planning to set up a whole events programme for next year and get the whole community involved!

Kelly, a young woman in an electric wheelchair, looks out over a football pitch

Making the club accessible

I’m a disabled person and the ground is not the best for me on a day-to-day basis. Upstairs we have our hospitality suite and our VIP boxes. I can’t gain access to any of that. Our boardroom where we have all of our board meetings is upstairs. Basically, all the good stuff is upstairs! There are also steps in the corridors of the offices at the club.

We’re putting ramps in where needed so we can take on more disabled staff and apprentices, other than myself and we’re going to put a lift in to the upper levels. Disabled fans will be able to enjoy the VIP areas as they should. They will be able to get access to all of the match day hospitality, as well as booking their private and corporate events upstairs with full accessibility.

We will also be adjusting our toilet facilities to make them better for every disabled person not just certain disabled people. The disabled  seating will also be changed. At the moment, it’s on the front row, so I want to move it around so people aren’t just in the firing line of the ball during matches. I’ve nearly been hit in the face many times watching a match!

I think it’s so important to make these changes. I need to practice what I preach. I get really annoyed when I go places and I want to have the VIP treatment but I can’t. I just need disabled people to have the exact same choices and experiences as everyone else. I want to make sure they can come to the club and enjoy the football without having to make special arrangements. I want it to be smooth sailing for everyone.

I think that football clubs need to think about disabled people. If we take away all the barriers so people can just enjoy things without having to worry, people are more likely to come and enjoy things and put their money into your pocket.

The future is looking bright. The club as a whole are united now.

Kelly, a young woman in an electric wheelchair, looks out over a football ground

Kelly is sharing her story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Catch up on all the stories so far on our 30 under 30 page.

To find out more about stories and how they are at the heart of everything we do at Scope, visit our new Stories hub.

There was no disabled loo so I had to use a disposable barbecue! #EndTheAwkward #ThrowbackThursday

Personal questions, portaloos, and the dreaded ‘platform’: Kelly, 26, and her husband Jarath discuss the trials and tribulations of music festivals when one of you is disabled.

This week Kelly showed us how awkward it is getting high five’s from drunk people as part of Scope’s End the Awkward campaign, so we’re doing a #ThrowbackThursday to her awkward festival moments!

Kelly: I’ve got spinal muscular atrophy type 3. It’s a muscle wastage disorder. I always get ‘why are you in a wheelchair?’ from strangers. It’s annoying because it’s the most basic question you can ask. A lot of people assume I’ve had an accident. Because I’m confident and outgoing, they can’t believe that this is a natural thing – that I’ve always used a wheelchair.

Jarath and Kelly drinking tea at a music festivalJarath: At festivals, people have had a drink so they think it’s OK to ask personal questions – and we get a lot of personal questions. I tend to get creative: I told one bloke that Kelly fell out of a plane and someone else that she was run over by a combine harvester!

Kelly: One of the most annoying things is when people come over and tell me how much respect they have for me… simply because I’m at a festival. It’s not like I’m doing a parachute jump. I’m just having a life!

Dancing

Jarath: At Global, we were backstage dancing and more people were watching us dance than were watching the actual gig. They kept tapping Kelly and giving her high fives.

Kelly: People often try to dance with me and push Jarath out of the way, pretty much hitting him in the face with fags and beer bottles, to try and get to me. I just think ‘what are you doing? Have you got no respect?’

A selfie of Jarath and Kelly at a music festival

Jarath: People gravitate towards Kelly and don’t realise I’m with her. They think I’m her mate or carer – never her fiancé. At one festival, I’d helped Kelly up and we were having a dance. People kept telling me to put her down. I was like ‘look this is my missus, leave us alone!’

Kelly: It’s not all bad though. At Reading, we had this big pink duffle bag on the back of my chair and filled it with beer, gin, crisps and sweets. Contraband basically! We sailed past the security guards while other people were getting their bags checked.

The disabled viewing platform

Kelly: The platform is a stage at the back of a gig for disabled people. The idea is that you can see over the crowd. It’s really far back from all the action and there’s never any atmosphere. It’s rubbish.

Jarath: It’s also heavily policed by security guards – you feel like you’re being constantly watched. One time, we got caught with a beer on the platform and got kicked off. Seriously, how many people are having a cheeky beer at a festival but because we’re the ones on the platform, we got spotted.

Kelly: We moan about disabled facilities but at least most festivals try. There was nothing at Global when we went – no charging points, no platform, nothing. I complained to the organisers and ended up blagging us a place in the VIP section.
We asked if we could put our tent next to the guy doing airbrush tattoos because we knew he would have power. I ended up charging my electric wheelchair there every day. When you’re disabled, you have to be creative and find ways to make festivals work for you.

Toilets – or lack of them

Jarath: Once, Kelly got banned from using the disabled toilets at a festival because she couldn’t ‘prove’ she was disabled – apparently she didn’t have the right wristband!

Kelly: I couldn’t use the normal portaloos because of the steps up to them. I ended up having to use a disposable barbecue! We joke about it now – we joke a lot – but it ruined the festival for me.

Jarath: At another festival, we paid to use the VIP area but there were no disabled toilets. They obviously thought you don’t get disabled VIPs! Kelly kicked up a fuss and the best they could offer us was one free drink for the inconvenience. So she told the bar staff we were entitled to free drinks all day. Result!

Kelly: I kicked up such a fuss they ended up using a crane to lift a disabled portaloo into the VIP area. Suddenly we heard the beep beep beep of the crane reversing and looked up to see a disabled portaloo dangling above us. I don’t think the festival organisers will make that mistake again!

Read more awkward stories. If you’ve had a similar experience we would love to know about it! Submit your awkward stories, and we’ll publish our favourites on our blog and social media