Tag Archives: charity

“We all want to be a part of society don’t we?” Addressing loneliness in disabled people

Yesterday we attended the launch of Sense’s report for the Jo Cox Commission on Loneliness. Their research found that over half of disabled people (53 per cent) say they feel lonely, which rises to 77 per cent for young disabled people. In this blog Scope storyteller and autism advocate, Carly Jones, shares her experiences and ideas for change.

I was really honoured to be invited by Scope to come to this event. As Jo Cox so eloquently put it when she was alive, you think of loneliness and you think of older people, we don’t think of children and young adults. But I know from my personal experience, and the autistic community as a whole, that we are extremely isolated.

My experiences of loneliness

I didn’t get my autism diagnosis until I was 32. You can read more about it in my last blog for Scope. I remember feeling very different at school. I was really anxious. I started realising that I never got invited to birthday parties. I was pretty aware by the time I was in my late 20s that I was autistic, but without a diagnosis it was like being in “no man’s land”.

When I finally got my diagnosis, I filmed it with the help of the National Autistic Society so that no-one else would have to go through this alone, because I felt so alone.

Getting my diagnosis changed things for the better because I could start going to autistic events without feeling like a fraud.  My advocacy work has really helped me find people who understand disability or other autistic people who just get it because they’re autistic too, and you can become friends. So my advocacy work has actually been my social life line. People say “Oh you’re so selfless” and I’m like “No, doing this helps me get out of the house and meet people too!”

Carly smiling with Mel and Juliet from Scope
Carly Jones with Scope staff

Three ideas to address loneliness in disabled people

Better representation in the media: If there’s an autistic person on TV usually it’s a boy who’s about 8-years-old and into trains! It’s really not helping. It’s isolating the thousands of autistic women and girls in the UK who are struggling to have their needs met in everyday society. We need a autistic girl in a big show like Eastenders, who has challenges but strong and sassy.

The education system needs to improve:  Schools need to be more holistic in their approach to difference and really nurture talent. You get awards for being good at maths but what about the artists, the philosophers, the big thinkers, the social entrepreneurs?

I had a really difficult time at school because I struggled with the environment, but teachers just thought I was being naughty. When your needs are not being met it can lead to mental health problems and vulnerability. A lot of the children who come to the events are home educated because they’re not “autistic enough” for a Special Educational Needs (SEN) school but they can’t get the support they need in mainstream school. That can be incredibly isolating too.

More social opportunities: I run a bi-weekly group for young autistic people.  The stereotype is that we never get invited to things so, with the events that I put on, we go to some really cool places and they can invite whoever they like – autistic, disabled, non-disabled. Hopefully their friends will then grow up not seeing autism as this stigmatised thing but thinking “I had an autistic friend in school and we did some really cool things”.

Adults need better groups too. Sometimes you’ll see events for autistic adults and it’s just basically what you would have for a child but for an older audience. You know, we are cool, quite cool and we are adults in our own right and we are responsible people. I think if there were more clubs – which are affordable – there would be more opportunities to meet people.

woman standing in front of a poster holding a magazine
Carly Jones, Autism Advocate

We all want to be a part of society don’t we?

It was fantastic to be at this event. I’ve already got so many emails in my mind that I want to send! Everybody genuinely wanted to hear other people’s stories. The fact that it’s cross party, cross charity, working together, is really fantastic. We all want to be a part of society don’t we? As someone said, it’s not a 10 year solution, it’s more like 40 year solution, but I’m hopeful that we’ll get there.

From 10 July to 13 August, Sense will be leading a coalition of disability organisations, including Scope, to shine a spotlight on the issue of loneliness for disabled people and the steps that we can all take to help tackle it. Head to the website to find out how you can get involved.

If you have a story you would like to share, get in touch with Scope’s stories team. 

Why we’re taking on the London Marathon for Scope

Vicky, Louise and Nina are running the London Marathon for Scope – “a charity close to our family’s heart”. In this blog, Vicky, her sister Mell and her nephew Moss, all talk about why raising money for Scope means so much to them, and why they are excited to take on this challenge! 

“My little sisters have decided to run the London marathon!”

They are raising money for Scope – a charity close to our family’s heart.

My eldest son, Moss, has cerebral palsy. Thanks to Scope’s support, and against the odds (prognosis was that he would never walk), he took his first unaided steps when he was almost four. To hold your child in your arms and be told that life would not be the same for him as it was for his peers was the hardest moment in my life. Scope gave us hope.

To be able to walk into school on his first day and be able to stand up in a bar and look at people in the eye when he was older – that was my goal. My son is now more independent than any other lad of his age I know. With the use of sticks he walked into his first day at school and he walks into bars on his feet often! To say I am proud of him wouldn’t even ‘cut the mustard’ (if that’s a real saying?)

This, I know was down to the support of Scope at the beginning of our journey. I am mega proud of my little sisters for doing this. I hope Scope’s support for parents continues as I honestly don’t know what we would have done without them.

“I’m so happy that my aunts are running for Scope”

Scope had a huge impact on my life. If it wasn’t for Scope and the encouragement from my mum I wouldn’t be able to walk unaided now. When I was a kid I was told I would be in a wheelchair for the rest of my life but that’s not the case and that’s down to Scope and my mum.

I’m so proud and happy  that my aunts, Vicky and Louise, are running for Scope. I didn’t realise they knew so much about how Scope helped me when I was growing up, so it’s great they are raising money for Scope. I work at Scope now so I really appreciate where the fundraising goes and how important it is.

I really hope to be there to support them on race day. My dissertation is due though so I don’t know if I can make it, but fingers crossed I can be!

Head and shoulders shot of Vicky and Louise smiling with a field in the background

“I’m really looking forward to marathon day”

I started running last February as I wanted to get fit after having my two children. I started the ‘Couch to 5k’ on my phone. This developed into entering 10k races and a half marathon with my younger sister Louise. Then we decided we wanted a challenge as I was turning 40 this year and we entered the London marathon.

Running for Scope was a natural choice for us because our nephew Moss has cerebral palsy. Without being supported by Scope we really believe he would possibly be in a wheelchair, rather than having the strength and determination to walk with his crutches. Scope also offered my older sister Mell the support she needed when Moss was growing. We met other families who benefited from Scope’s service too and have family friends who have also greatly appreciated the service Scope provides.

I’ve loved training for the marathon with my sister and our friend Nina has been a huge part of it too. It’s been challenging and tiring at times but we have all pulled each other along. When my legs are stiff and tired at the end of a run I think of my nephew and this makes me more determined and motivated to carry on and more proud of him. He is one totally amazing person.

I’m really looking forward to marathon day and running for Scope. Although I’m feeling a little overwhelmed about how many people are going to be there! We really feel that Scope are an amazing charity and we’ve all been working hard to fundraise so that they can continue the great work they do.

Want to help Vicky, Louise and Nina reach their goal? Make a donation on their fundraising page.

If you fancy taking on a challenge, sign up for 2018 or check out some of our other events!

Spare Tyre Band: a group of disabled musicians making a big noise, and their own instruments

Two weeks ago Guy Llewellyn shared his experience of starring in the Big Band featured in the 2016 Paralympics Superhumans advert. Here, Amy Smith, from leading  participatory arts charity Spare Tyre, tells us about another musical ensemble: The Spare Tyre Band.

The Spare Tyre Band members do not simply play their instruments. They make them too. 

The Spare Tyre Band: “It’s Like It’s A Part Of Me!”

My name is Amy and I work as the General Manager of Spare Tyre. Spare Tyre is a leading participatory arts charity based in London. For me, meeting the Spare Tyre Band has been one of the top highlights of working here.

The Spare Tyre Band features disabled performers who have learning difficulties. Each band member plays an instrument they’ve created from recycled materials.

“The Band is loud, and proud”

Band member Paul and Spare Tyre Artistic Director
Band member Paul and Spare Tyre Artistic Director Arti Prashar at Lewisham People’s Day

I first met the Spare Tyre Band in Catford. We had arrived for Lewisham People’s Day on a warm Saturday in July and I stopped by the station to pick up Band Member Chirag on my way. Even though we had to travel there independently, we met up so we could find our way to the park together.

The Band is a loud, proud and creative way for people with learning difficulties to make their voices heard. It allows them to showcase their skills to the world, and helps challenge prejudice about disabilities and learning difficulties.

The programme is challenging and encourages performers to stretch themselves. The physical activity of the rehearsals and performances is good exercise in a supportive and fun environment.

“I feel amazing, I feel I’m reaching out. It’s like it’s part of me… Spare Tyre Band gives me a focus and a meaning” – DJ, Spare Tyre Band member

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DJ, Jack and Jocelyn performing at Wandsworth Arts Fringe

Meet the Instruments

We love to be as creative and inventive as possible when we make our instruments.

We are very proud of our tubular bells made of old copper pipes. We have also got four large drums made of old industrial spools. We also have dozens of smaller drums and trumpets made from plastic tanks, sweet tins, bottles and plastic piping.

We love to discover and learn about new instruments from all over the world. For example, one instrument we use is the akadinda – a wooden xylophone originating from East Africa. Usually with a xylophone you strike the tops of the pieces, but with an akadinda you strike the ends to make a more beautiful sound.

Making Music, Making Instruments

At Lewisham People’s Day, the team performed their set of 20 minutes. They played ‘Our Beat Speaks to the Heart’ and everyone’s favourite: ‘Fish and Chips’.

After a little break, they got out a huge picnic mat and everything we’d need for the drop-in Instrument Making Workshop: brightly coloured tape, ribbons, dried beans, plastic piping, bottles, and carefully taped cans and tins.

Anyone can come join in, and make a shaker or a drum out of recycled materials. We all sit down together and build and decorate the instruments. Then we have a jam session, with everyone playing together.

The workshops have a strong ethical and environmental message, as well as a creative one. They are a reminder that anything can be reused and turned into something fun.

Bigger and Better

Since March, the Band has gathered every week to build more instruments, compose new material, and rehearse. The performance schedule is ambitious and professional.

Three band members put their hands and wristbands together
Chirag, Scarlett and Amy put their wristbands together at Lewisham People’s Day

Summer 2016 has been a busy run of outdoor festivals all across London. As well as Lewisham People’s Day we hit Wandsworth Arts Fringe, Redbridge Green Fair, Fairlop Fair, Wandsworth’s ‘Get Active’ Festival, and The Streets in Ilford.

The Band’s sound is loud, rhythmic, and infectious. The beat will always get the audience up on its feet.

Members of the Band often travel together to support each other in the journeys across London. We meet at local stations and catch trains together, or just walk together to find the Festival site.

As everyone knows, London is a huge city. But travelling all over London together makes everyone feel more confident and independent.

“We are always looking for new members to join”

The Spare Tyre Band will be forming again in Spring 2017. We are always growing and looking for new members to join.

For more information about Spare Tyre and the Band visit their website.

Know of any other Bands for people with complex needs? Or ever seen the Spare Tyre Band perform? We would love to know what you thought!

Get in touch with ideas or comments on Twitter or leave a comment below!

“Be a bit brave, take part and go for it.” Jack, the volunteering star

30 under 30 logo

This story is part of 30 Under 30.

 

This Volunteers’ Week, we spoke to one of our volunteering and Scope for Change stars, Jack Welch, who gives much of his time to a number of different charities.

As part of 30 Under 30, he talks about how volunteering has benefited him. Several of the organisations he has volunteered for have also sent in some glowing testimonials.

Volunteering is a way to explore new opportunities and different ways of working. You can also meet new people and develop your networks. It’s the variety that’s always the most exciting!

I think there is a lot out there for people to get stuck into. Volunteering for charities doesn’t just mean volunteering in a charity shop – there are loads of different things you can do.

For me, volunteering has helped me to build on social skills, communicate with others and be a bit more independent. You really develop that over time. Although it’s volunteering, there’s an expectation of having a skillset that you need to commit yourself to.

Jack, a young disabled man, smiles and talks to a room

It gave me the opportunity to move away from some of the troubles I had at secondary school. I’m not as anxious as I used to be. It’s been great to have a bit more independence away from home and the family. I’ve really expanded and broadened my networks beyond the safety of my closest relatives.

It’s really changed me. Five or six years ago, the thought of using public transport would have terrified me but now it’s just second nature. I travel quite a lot for my volunteering.

For someone thinking about volunteering, I would say go for it. If you spot something that might develop your skill set, help you move into employment or meet new people, get involved!

Be a bit brave, take part and go for it.

Testimonials for Jack

Jack has left a lasting impression at all of the charities and organisations he has worked for.  Below are just a handful of the glowing testimonials given to us by some of these organisations.

Jessica Benham, Outreach Officer for Holocaust Memorial Day Trust

“Jack has been working with the Holocaust Memorial Day Trust for four years. He has attended workshops, engaged with Holocaust survivors and raised awareness about the Holocaust and subsequent genocides amongst his peers. Jack has been an exceptional member of the Youth Champion Board, contributing to the development of the Youth Champion programme to ensure that people aged 14-24 are empowered to hold their own activities for Holocaust Memorial Day.”

Find out more about Holocaust Memorial Day Trust.

Dave Thompson, the Director of Dorset Youth Association

“We first met Jack many years ago as a quiet and shy young man.

Through the years we have seen him develop and grow as he has become involved in more and more community projects. Jack was heavily involved in our Young Remembers project which looked at the History of Dorset Youth Association (DYA) over 70 years. Jack and his peers were so passionate about their heritage and wished to continue to meet as a group to volunteer. Therefore staff at DYA attracted new monies to support the group in a major fundraising initiative. This investment attracted almost £40,000 and led to a new youth led project Walking in their Shoes.

Jack is always polite and pleased to volunteer his time to help others.”

Find out more about Dorset Youth Association.

Amber DeRosa, Participation Officer at the National Children’s Bureau

“Jack has been an active member of Young National Children’s Bureau (YNCB) since 2015. During this time, he has been actively engaged in a range of activities and events including speaking at conferences, debates and meetings, campaigning work and taking part in various discussion groups and consultations.

Jack is a delightful young person to work with. He continually makes valued and thoughtful contributions to NCB’s various programmes of work and through this he genuinely makes a big difference to the lives of other children and young people. He is hugely reliable and very dedicated to the activities which he volunteers to be a part of and is extremely popular across all of NCB!”

Find out more about National Children’s Bureau.

Harris Lorie, Programme Manager for Spirit of 2012

“Jack has been a highly committed and valued member of Spirit of 2012’s Youth Advisory Panel (YAP). His contributions in our meetings are measured and thoughtful, drawing on a wide range of experience. He has assessed grant applications sensitively, impressing both other YAP members and the Spirit staff team. Jack volunteers enthusiastically for opportunities that come up, be that visits to our projects or attending a national gathering of youth panels. He always represents Spirit professionally, and creates great communications material for us as well. Thank you Jack!”

Find out more about Spirit of 2012.

Jack, a young disabled man, stands next to a banner which says "Volunteering matters to young people. 96% of volunteers feel better prepared for employment"

Jack is sharing his 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.

If you’ve been inspired by Jack, take a look at our volunteering opportunities.

“I want to connect people like me and show them that they’re not alone” – Ellie, the social entrepreneur

30 under 30 logo

This story is part of 30 Under 30

 

Ellie was just 18 years old when she set up CP Teens as a way of reaching out to other young people who feel a bit lost and isolated. The response was fantastic and CP Teens has grown into a vibrant online community. Now, at 21, Ellie continues to pretty much single-handedly run this amazing organisation.

As part of 30 Under 30, she talks about why she set CP Teens up, their progress so far and how the 2012 Paralympics inspired her to make sport accessible to more disabled people.

When I was younger, people at school all wanted to be my friend because I’m a little bit different and children quite like that. But as I got older, by 14 or 15 they didn’t want to be with me anymore. At the time I didn’t really realise I’d become socially isolated because I was concentrating on my studies, but when I left school my friends all went off to university and forgot about me.

I felt like there was nothing out there for people like me, socially and I didn’t have the confidence to go out and get a job. So I decided to set up CP Teens. I wanted to connect other people who, like me, just felt a little bit lost and to tell them that they’re not the only people out there who feel isolated.

The response was amazing

At first I just set up a Twitter account because I was a bit bored! I thought it was going be something I would get tired of after a week and never log back on, but I woke up the next morning and people like Francesca Martinez and Sophie Christensen were followers!

Other young people were getting in touch saying “I’m a teenager too and I feel the same way, it’s so nice to find someone else.” I got so many emails like that I couldn’t believe it. So I just kept going. I set up a website and then a Facebook page and it just kind of grew.

I just thought it was me feeling that way so it was really nice to know I was helping other people through my own experiences. It made me feel less alone. I’ve met some really cool people too and I even hear from people overseas.

Ellie, a young disabled woman, smiling at the camera

Reaching more people

On CP Teens there’s an online service so people can connect and chat. We have social get-togethers and we do a ball every year. Teenagers and young people from across the UK come together. It’s really nice. We have a RaceRunning club which is really good and we also have a partnership with Accessible Derbyshire. They do loads of accessible activities – canoeing, climbing, you name it.

I get a lot of parents [contacting me] who have young children who’ve just been diagnosed so I’ve set up another part of CP Teens called CP Tinies and CP Tweens. It covers 0 – 13 years and children can get involved too. I want it to be for everybody.

In my gap year I got into Paralympic sport and it just changed my life so much. I started to wonder how many other young people like me think can’t do sports. So I decided to do a degree in Sport Development and Coaching. I’ve just finished my second year and I’m really enjoying it. Eventually I’d like to incorporate it into CP Teens and bring my two passions together.

Ellie, a young disabled woman, races on an adapted tricycle on a racing track

Hopes for the future

Ultimately, I want to do CP Teens full-time. I only do it very part-time at the minute because of university, but I think if I put in more hours I could make it so much better.

We already have over 2000 followers on Twitter and more than 1000 likes on Facebook. The website gets about 1000 visits a day which is pretty cool (and scary!) and I get about 25 emails a day too. It’s hard trying to fit it in around university but in the summer it does get easier.

We’re just about to get charity status so that will be really good. At the moment, because it’s not got a registered number, people can be a bit dismissive of it. We’ll also be able to apply for funding and have charity partners so we can do more things. I just want to see it grow and grow, and reach more people.

I get so many emails from people saying “because of CP Teens I’m much more confident and I’ve done this and that”. I can remember, before CP Teens, thinking I was the only person on the planet with cerebral palsy. I think it’s important to let people know that they’re not alone.

Ellie is sharing her 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 get involved with CP Teens and find out more about Ellie, visit the CP Teens website.

The Scope Film Awards 2015

2015 has been a very successful year for Scope’s film team. We’ve dusted off the disability history books, trained comedians to be spies, kissed awkward goodbye and got all hot under the collar about sex. All in all, it has been one big rollercoaster ride.

We thought we’d mark the end of the year with a mini ‘awards ceremony’ to mark some of our favourite and top films. What have been your favourite Scope film moments?

Most viewed – What Not To Do

We enjoyed a whole summer of ending the awkward. Who could forget our “What Not To Do” shorts made in collaboration with Channel 4? Fronted by Scope Ambassador, Alex Brooker, these six hilarious short films racked up over half a million views on our YouTube channel, thousands upon thousands of views across our social media and became the most viewed shorts on the Channel 4 website.

Most shared – The Disability Discrimination Act 1995: The campaign for civil rights

Last month (November 2015) we delved into the archives to mark the 20th anniversary of the passing of the Disability Discrimination Act. We featured a variety of content on our website for the occasion including a film which collected the stories and voices of some of the most influential campaigners of the time. This film became our most shared video on our Facebook page with over 2,300 shares, over 1,700 likes and over 235,000 views.

Best female – Kelly Perks-Bevington

For those of you who have been following Scope in 2015, you’ll probably recognise Kelly. She has been popping up everywhere, from talking about awkward moments at festivals to stripping off for Enhance the UK’s Undressing Disability photo exhibition. We got Kelly involved in our A-Z of sex and disability. In this film she talks about dating, marriage and sex.

Best male – Adam Hills

The Australian comedian best known for hosting the Channel 4 show, The Last Leg, became a firm favourite when he took on the role of the enigmatic man in black for our parody of the classic Milk Tray advert. With his daring stunts he won the hearts of many, including celebrity actress and singer, Holly Valance in our advert for Great Donate campaign.

Best story – Harrison’s story

We love our story films here at Scope. What better way to capture the incredible stories that are happening up and down the country? Our latest offering focuses on Harrison’s story, a young disabled man with a learning difficulty, who has struggled to find and stay in employment. However, thanks to the specialist support he got from his local Scope employment service, that has all changed.

What’s next?

We’d like to thank you all for your support, shares and likes throughout 2015. We really hope you’ll subscribe to our YouTube channel and join us in 2016 for what we promise will be our greatest year of film yet.

You can expect compelling stories from disabled people and their families, vlogs from some of YouTube’s rising stars and appearances from some well known faces…

If you can’t wait until then, check out our playlist of some more of our top films from 2015 below.