Category Archives: Events

I did a head and beard shave to help other families like us

Peter’s daughter, Elara, has cerebral palsy and has used Scope’s Sleep Service.  Peter wanted to help raise awareness and money for Scope so organised a fundraising event.

In this blog post, he talks about his fundraiser and how you can organise your own.

We saw how hard it is for some parents to cope

My daughter Elara was born 8 weeks early. The doctors and neonatal department soon discovered haemorrhages and believed this happened whilst she was still inside the womb. As time progressed, it was apparent that she had hemiplegia which would affect all her limbs especially her right leg and this was an indicator that she did have cerebral palsy.

A smiling baby in a high chair
Elara smiling and happy

We’re active on social media and on Facebook groups for parents of children with cerebral palsy and we saw how hard it is for some parents to cope. While the challenges facing Elara are comparatively mild others aren’t so lucky and the condition can have a significant impact not just on the children but on their families as well.

Visiting a Scope sleep clinic

My wife visited one of Scope’s sleep clinics. We found it useful and being there confirmed we were doing the right things to get Elara to sleep and we now know what Elara needs. The service was easy to access and was only down the road from us. We gave them a call and luckily there was an available appointment on the day. These services are so vital to helping parents in the same position as us.

I was only meant to do a head shave

A friend of mine did a head shave for charity a few years back and I thought it would be a great event as people always want to see their friend or colleague do something daft.  So, I wanted to help raise awareness and money for Scope.

My target was £250. I was only meant to do a head shave, but I mentioned in passing to one of my colleagues asking how much it would take to get sponsored to shave the beard off.

A man in a Scope tshirt, looking at the camera, holding a phone. He has a bald head and beard.
Peter halfway through his challenge

It then spiralled out of control in a good way, my colleague emailed out that we needed to get to £750 donations to get my beard shaved off. To my surprise this happened.

A man sat on a chair, holding all of his shaved hair and beard in his hands. He is looking glum.
Peter at the end of his challenge

The support from my family and friends was brilliant especially the support from the office.

Just before the shave we were below £600 but, on the day, someone made a large anonymous donation to get to the £750 target.

My Chief Executive Officer came back from sabbatical and increased the donations to reach £1000. I was so overwhelmed by the generosity that everyone showed.

Aside from seeing the generous donations come through for Scope, the most enjoyable part was the shocked faces from people! I was getting lunch just after the shave and people who I worked with walked straight past me.

The support from Scope was great and it was nice to see that the team were keeping in touch to see progress and how things were going. A lot of places will leave you to do it and you won’t hear from them.

It’s such a good feeling knowing you can help

I would absolutely recommend organising an event like this or any type of event for charity. Personally, it’s such a good feeling knowing you can help and the effort you put in gets a tangible result, to invest in the services to help disabled people.

I’m a firm believer of paying it forward to help each other to make this world a better place. It is important to understand that everyone is bound together and can achieve great things.

My target was only £250 however through the generosity of colleagues, family and friends I was able to raise £1085.18 for Scope.

I wouldn’t do anything different, I think I really hit the nail on the head with this event. However, if I was to do it again, I would organise a different type of event. Something like a physical challenge.

We want to support even more families like Peters by funding services like Sleep Right, improving sleep for disabled children. Find out how you can get involved on our website.

Young disabled people share their hopes for equality

Regardless of who we are or where we are from, we must work together to ensure that every member of society has an equal chance to participate in our democracy and to have their say.

Carly Jones MBE hosted an EqualiTeas event at Scope, inviting young disabled people to meet, talk about equality and democracy, eat cake and decorate biscuits! An event championed by UK Parliament, aiming to bring UK communities together to explore what equality means to people.

Carly is an autism advocate who has been tirelessly campaigning for equality for years after her own battle to get a diagnosis.

Here’s Carly’s story.

I asked Scope if they could support a celebration of the “equality of voting rights”, EqualiTeas event at their new Here East offices at Queen Elizabeth Park, Stratford. Here I am talking to the Scope team about the event.

Scope team filming Carly who is sat on a sofa.
Carly being filmed.

My hope in asking Scope and I to deliver a get together, was we would be in a better position to amplify the voices of disabled people in the UK. When Scope said they would love to host this event and provide social media and PR staff, plus camera people and scope story tellers all free of charge, I was elated and so grateful!

We created our idols on gingerbread

Guests from different age ranges, genders and disability, arrived from local and not so local areas. We ate cake, and drank tea. Younger guests decorated gingerbread into whatever their idols or ambitions were, which included an astronaut, a mortician and Phil Marsh from Scope.

A younger guest sat at a table painting gingerbread
A younger guest painting (with icing) their idol onto gingerbread.

Huge EqualiTeas posters were used to sound board our needs and hopes for equality. We debated as a group our answers to such questions as “what does equality means to you?” and “have you ever stood up for equality?”.

Our passion for the subject shone through and we noted our responses on the posters themselves.

Carly sitting on the floor writing answers to questions on to the Equaliteas posters
Carly writing answers to questions on the Equaliteas poster

Why this event is important

The reason Scope and I held this event was to ensure that disabled voices were heard in democracy. To inspire a younger disabled generation to not be afraid to step forward. There are approximately 13.9 million disabled people in the UK. We are an extremely large minority group.

To ensure that no one is left behind, our voices and suggestions must be taken seriously. We must have a seat around the democratic tables to fully represent the UK appropriately.

The group sat on chairs discussing equality.
We are having an in-depth conversation about equality.

Young people would like equality to work

Many wanted shops to be more disability friendly. For some their hope was a fair chance at education. Safeguarding and sex education for Autistic girls was of high importance to many, and more representation from the Black, Asian, Minority Ethnic disabled community. Some wanted to get the job of their dreams because they were talented and they deserved it not just because they fitted a diversity box ticking exercise by an employer.

That in a way surprised me, we are often given the impression that young people of today, disabled or not, have some form of entitlement. To hear a young person not want special treatment but simple equality to work struck me as incredibly articulate.

Cakes with Equaliteas sticks in them in the foreground. Guests are in the background.
Equaliteas cakes

We all had fun

The guests seemed to really have fun. Parents of the younger guests got in touch to say how proud they were of their young person and to give thanks to Scope and myself which of course is incredibly kind and heartwarming.

Check out more of the story and photos on Instagram, watch our film of the event.

By @CarlyJonesMBE

What’s next

Next up is the Global Disability Summit 23 and 24 July again at Here East, Queen Elizabeth Park, Stratford with representatives of Include Me Too (Parmi Dheensa), the Department for International Development, British Council and UK government.

There is often an illusion that when the UK talks disability we do not include our own. This could not be further from the truth. There will be many British disabled advocates and activists participating at the Global Summit for others and our own countries benefit. It’s an absolute honour to be among them and share the voices, wants and needs of others is an absolute pleasure of a duty.

Take part in the conversation at #DisabilitySummit #NowIsTheTime.

If you have a story you’d like to share, get in touch with the stories team.

If you want to get involved in campaigns and make change happen, have a look around our campaigns page and get in touch.

I’ve cheered at 10 London Marathons – here’s why I keep going back

The clock is already ticking – just 5 days until the start of the Virgin Media London Marathon 2018. This year over 100 brave runners will be taking part to raise money for Scope. And we’ll be fielding another team on the day – the volunteers who shout themselves hoarse at our cheering points*. Carol, a veteran of many cheering points, tells us why the marathon is such a great day out, even if you don’t run.

This year I’ll be taking part in my 10th London Marathon (cheering point). Every year people ask me “What’s the big deal? Why are you so excited?” and I have to confess that it’s addictive.

Collage of marathon costume photos including a dog, Mr Tickle, T Rex and the Tardis
Did I mention the Marathon costumes? They are epic!

Logically, standing around for the better part of a day to watch more than 35,000 total strangers run past should not be so rewarding, but it is. This year there’s the added bonus of fine weather but frankly most of us would be cheering in the pouring rain if we had to.

There’s a great party atmosphere at cheering points; usually someone is playing music loudly nearby, and you know that you might meet some old friends and certainly make some new ones. In fact, the Marathon has been described as “London’s 26-mile long street party”.  But there’s more to it than that.

In a small way, you’ve helped someone achieve something awesome

Predictably, when someone in your charity’s running shirt passes by, the whole cheering point loses its collective cool; everyone goes wild, bangers are banged, whistles blown, and high-fives exchanged. But most charity cheering points will tell you that they don’t just cheer their own runners – they’ll cheer everyone, especially those runners who look like they need a boost.

And that’s when the Marathon Magic happens – when you spot a total stranger, flagging a bit as they run by.  You yell out their name and a bit of encouragement and you can see it having an effect. They perk up a bit, maybe even smile. Sometimes eye contact is made and you get a thumbs up. Sometimes they might even be able to gasp out a “Thank you” but that’s just a bonus.

After my first marathon charity cheering point, the fundraising team got a letter of thanks from one of their runners. This is from memory, but it went something like this:

“It was my first London Marathon and I didn’t know what to expect. By the time I got to Canary Wharf I was really struggling but then I rounded a corner and a wall of orange went berserk.

And in that moment, I knew I was going to make it to the finish line because ahead of me on the route there were more pockets of total strangers willing me to finish and no way was I going to disappoint them”

And that’s why we do it. You know that in a small way you’ve helped someone achieve something awesome. For me, that’s a pretty good use of a Sunday.

My top tips for cheerers

The runners get plenty of tips for getting through the day, but I’ve picked up a few myself for cheerers:

  • Essentials – water and food. You might be standing directly opposite a coffee shop but, once the runners start coming through, there’s no way you can reach it if it’s on the other side of the road.
  • Tech issues  – if you’re planning to take photos make sure you’ve got an extra camera battery or a spare power supply for your phone. Also, once things get busy, just accept that you will miss great stuff if you’ve got your head down over your phone. Getting a signal can be tough too, especially anywhere around the finish line.
  • Timing – check what time the runners will start passing your spot and allow plenty of time to get there. Areas around tube stations tend to get really jammed and, even with stewards directing traffic, you can spend 15 minutes just covering 100 yards.
  • Clothing – Check the weather forecast on the day but layers are best. If you’re standing with a charity, allow room for a T-shirt to go over the top. Also bear in mind if it’s sunny, that the sun will move (obvs!) during the day. Although you may start out chilly and in the shade, you might be in full-on sunshine by lunchtime – so it’s hats and/or sunscreen, people.
  • If you’re not on a charity cheering point (WHY NOT?), try not to be standing downstream of a water point. Once they’ve re-hydrated, runners tend to drop their bottles and, if any runners accidentally kick or tread on a discarded bottle, the contents can go everywhere, but mostly all over you. I found this out the year that Lucozade pouches – briefly – replaced water. It was sticky.

If this has made you realise what a great day out you’re missing, there’s still time to join one of Scope’s cheering points. 

You can just show up on the day or sign up online to get last-minute updates and information. Either way, here is all the information you’ll need.

*Purple wigs optional

At the Commonwealth Games people said, ‘I didn’t realise you could throw that far’.

As another successful Commonwealth Games draws to a close in Australia we spoke to 2014 discus gold medalist Dan Greaves and  Laura Turner about the past, present and future of inclusive sport. 

Dan Greaves

I was very fortunate to be involved in the Commonwealth Games in 2014, it was an incredible experience. People came up to me afterwards and said, ‘I didn’t realise you could throw that far’. It was really great to demonstrate how powerful Parasport is and make an impact.

I came from a sporty background so I was pushed into sport and loved it. I was a swimmer first. Watching Adrian Moorhouse, Sharon Davis, those kinds of people, on TV doing so well at the Olympics. Atlanta in 1996, Linford Christie and Sally Gunnel. I was in school then, practising waving to the crowd at opening ceremonies. Four years later, I went to Sydney for my first Paralympics.

The impact of London 2012

You can still see the domino effect of London 2012. There are more people trying to get active and schemes popping up left, right and centre. It just shows you that there’s an interest in sport. If you really, really want to do it then it doesn’t take as long as you think.

Sprinter Laura Sugar, who has the same condition as me, told me that she was inspired after seeing an advert for London 2012 where I was talking about my disability. It took me back a bit, we get so wrapped up in our little world. So for her to then reach the Paralympic games, I was gobsmacked.

So, had we not had London 2012 we might not have had people like Laura now involved in sport. The more we can do to help promote it, get a bit of nostalgia going and keep it in people’s minds. It’s always going to be strong because we’re such a sport mad country.

Athletes of the future

Npower launch partnership with Team England
Dan and Denise Lewis with school kids

I’m now working with Npower and Team England to go into schools and encourage more kids to take up sport. It’s amazing to see how enthused they are. When I was growing up I didn’t have that opportunity and I would have really relished someone to come and show me their medals or talk about their experiences.

Just to give the opportunity to younger kids to say that they can do it and go on the same journey that other athletes have done. I hope I inspired some future champions –disabled or not. Sport is for everyone.

We’ve come leaps and bounds, a lot more people now understand Paralympic sport and they really enjoy it. When I was doing Paralympic sport in 2000 there wasn’t much media coverage, I think three members of the press came to greet us at the airport. Years later, at London 2012 Channel 4 had to put on an extra show because people wanted to watch it so much.

I think there are more opportunities now being given to disabled people across the UK to actually take up sport and they now know how to access those sports. When I was starting out I didn’t know who to contact or what organisation to go to. It just shows you now there’s been a complete overhaul and a lot more access for disabled people.

Laura Turner

Allowing Para-events to take place alongside main competition is fantastic. It gives spectators and supporters the opportunity to see just how much of an impact sport has on disabled people, both physically and mentally.

Laura Turner
Laura (left) competing with her co-pilot

Following its debut in Rio, it was great to see the Para Triathlon at this year’s Commonwealth Games, to see swimmers still get medals after being reclassified and new world records being set in Para Cycling.

Everyone should have the opportunity to take part in sport or do physical activity. I was 12 years old when I was introduced to sport, looking back this was too late in life. The Gold Coast set out to ‘share the dream’. I hope that the Games have inspired disabled people to want to have a go and I hope that Birmingham can do England proud in 2022.

Have the Commonwealth games inspired you? Let us know on Twitter

Find out how Npower and Team England are inspiring the next generation of athletes

“We had never thought about disability seriously until Oliver was born”

Chris is taking part in RideLondon for Scope next weekend. When his son, Oliver, was born with an undiagnosed condition, Chris didn’t know who to turn to for support.

We had never thought about disability seriously until Oliver was born. Oliver has an undiagnosed genetic condition which has certain physical manifestations. He was born with fused fingers and he has a cleft palate. He has some other conditions and a severe learning disability but it’s quite hard to describe. If your child has Cerebral Palsy or something that has a name, then you know where to go because there are people who will support you for that.

Oliver, a young child wearing glasses, smiles

We’ve also found out that Oliver is very strongly on the autistic spectrum as well. This came as quite a surprise to us because he has a very good sense of humour. He is very naughty but not in a bad way. He is incredibly cheeky. At school, he will quite often wait until his teacher is looking at him and then he’ll knock something off the table and he knows that he shouldn’t do it but he just has this glimpse in his eye while he does it and he makes everyone fall in love with him.

He is an outrageous flirt, no seriously, its dreadful, in a good way. He has a filthy laugh and this wonderful grin. What he will do, particularly with women, is just look you in the eye, give you this grin and suddenly you’ll forgive him for anything. You really do.

He has a lust for life

Oliver is going through a really good stage at the moment. He just has a lust for life . He wants to be in everything. He’s just started walking in the last few months which is great, charging all over the place, getting into all sorts of trouble. What is so nice about it for us is that he is getting into all the trouble that toddlers get into. It’s that ‘oh god Oliver stop doing it’, but then its ‘oh how wonderful’. This is what he’s meant to be doing given his stage of development.

He’s got loads of friends at school which is nice. Even though he’s totally non-verbal, he just seems to have a way with him about charming people. He loves any motorised transport so he gets incredibly excited whenever he sees busses or trains or helicopters. He does what we call his jazz hands when he sees them. He does that a lot and that’s a sign of when he’s excited.

He loves being in the car, loves being on the move. He’s quite partial to waving to everybody who sees him and then he just sees how many people wave back.

Chris with his son, Oliver. They are sitting on some steps on a beach.
Chris and his son Oliver sitting on the beach

The support from Scope has been invaluable

Scope offers such a broad variety of support and information. When you’re not sure where to go next, information is what you really want. Sometimes you just want to be signposted to an expert. Sometimes you want very specific things and sometimes you just want to know that someone else is there. That’s actually really important, just knowing that someone is there and they get it.

I’m a pushy little proud parent and I want Oliver to achieve everything that he is capable of achieving. I want to make sure that he has every opportunity in life to do everything he can.

Joining #TeamScope for RideLondon

I’ve done Ride London twice before and it’s so much fun doing it because it’s completely closed roads. It’s such a brilliant experience.

The support from #TeamScope has been really nice and the Facebook group is a nice idea. When you go past the point and you hear people cheering, it does give you a boost, and you feel part of something. I go out cycling for health and fitness, but Ride London gives me a focus and something to build up to. It also gives me the opportunity to do a bit of good as well.

I just worry that without organisations like Scope, opportunities for disabled people, like Oliver, are going to get taken away. Scope have been there for our family when we’ve needed support and I want to make sure that they are there for many years to come.

Join #TeamScope today to ensure that support and information is there for families like Chris and Oliver’s. Whether it’s running, swimming, cycling or trekking, we have charity events for everyone.

Find out more about the events that we have on offer.

‘Tears were shed. Fun was had’ – What it’s like running the London Marathon as a disabled person

Jay and Nicky both ran the London marathon for Scope on Sunday. In this blog they talk about taking on the challenge and share their experiences of the day.

Jay, from Winchester

Head and shoulders shot of a man smiling with a blurred background

Jay, 36, was born without a lower left arm and he wears a prosthetic arm in public. He has just run the London Marathon for Scope without his prosthesis – something he would normally wear to help him ‘blend in’ and feel ‘normal’.

Throughout my life I have always done everything my friends have done, including playing sports – I have even mastered one-handed golf. However, I have always felt self-conscious and experienced people staring, as well as people noticing my arm and then quickly looking away, as if they were embarrassed.

My prosthetic arm is held on by a silicone liner which doesn’t allow perspiration out. If I sweat during exercise water builds up and the arm starts to lose suction, meaning I have to hold onto it while I run, so it made more sense to run without it.

Sunday’s marathon was a big personal challenge, but I hope it helped in highlighting Scope’s work and gave others the courage to be themselves in public. I wanted to show other people, especially children, that if I can do this race without my arm then they can have the confidence to go out and not feel self-conscious about their own disability.

Shot of Jay running in a Scope vest

I woke up on the morning of the marathon feeling nervous. Not only was I going to be running the longest run of my life, I was going to be doing it without wearing my safety blanket, my prosthetic arm. Even going to breakfast in the hotel without my arm felt strange and travelling on the Tube was something I would never have done before, until that moment when I had to make my way to the start line.

I felt great for the first 14-16 miles. I did the first half in 1hr 48 mins. The crowd were fantastic. I had no negativity, no one stared, all I felt was overwhelming support and encouragement. It was liberating running without my prosthetic arm — I felt much freer and the running felt easier by not having to carry the weight around. The real highlight, as for many runners, was that run over the iconic Tower Bridge. And running past familiar faces along the way and at the Scope cheering points!

The last two miles, although painful, were incredible. The ‘J’ was falling off my vest so people were calling out ‘Come on, Ay!’ or ‘Scope Runner’! and other runners on the Mall were trying to encourage me to get across the finish line. I basically collapsed at the end! But I had done it. And I was so pleased to have achieved my target time of sub 4 hours with a respectable finishing time of 3hrs 49 mins.

The marathon was one of the hardest things I have ever done but it was so rewarding. Scope’s support was fantastic – from phone calls in the build up to the race to the post-race reception (and birthday card!). They reminded me why I was doing this and I was so glad I did. I think I achieved my goal of showing the world that disability needn’t be a barrier and to raise awareness of this great charity.

Nicky, from the Netherlands

Nicky running in a Scope vest with her oxygen tank

Nicky, 29, has chronic lyme disease and persistent glandular fever. Due to her conditions Nicky wore an oxygen mask, attached to a 2 kg oxygen tank during the marathon, to allow a continuous stream of 98% oxygen to be pumped into her lungs.

Last year I decided I was just going to do it, and sign up for the marathon. I was on crutches at the time – my illness had left me barely able to walk. I’m a very determined person though and my running training progressed well.  I wanted to show others that nothing should hold them back from following their dreams.

I ran the marathon because I believe I have a choice. I ran for those who don’t have that choice, and those who aren’t yet aware they have the choice.

Photo of Nicky sat on a bench tieing her shoelace

Race day was there before I knew it. I knew I was getting sick because my body was showing symptoms the day before, but I was hoping I’d get to finish the marathon first. I was wrong. Seven miles in I spiked the highest fever I’ve ever experienced on a run. I was able to keep running for another mile, but then had to resort to walking. I threw up (sorry, spectators) and knew I should stop. Along came Jess, some stranger who was running for another charity. She walked with me for a while and got me running again. Just one foot in front of the other. The crowds were amazing. Running with oxygen is hard (I bruised two ribs) and the pain in my lungs was insane, but everyone was rooting for me. I may have cried a few times.

Two miles later it was Jess who had to stop. She was in more pain than I could imagine at the time. She kept telling me to keep going and not let her slow me down, but we were in this together and I wasn’t about to leave her behind. I managed to grab a sign saying “Go Jess” from her friends in the audience and spent a couple of miles getting the crowds to cheer her on the way they’d been cheering me on the whole time. Tears were shed. Fun was had.
She wouldn’t have finished without me. I wouldn’t have finished without her.

Whether you’re physically ill, disabled, mentally ill, or just going through a really rough time: bad days are a marathon. Just keep moving forward the best way you know how. Try not to give up on yourself. And when you encounter someone whose hope is about to slip through their fingers, try not to let them give up on themselves either. We can all do this alone, but we are all better together.

Fancy taking on a challenge yourself? Sign up for 2018 or check out some of our other challenge events.