Tag Archives: loneliness

I thought I was the only one feeling like this, then the responses started coming in

Ellie felt isolated as a teenager so she set up CP Teens UK to connect other young people and show them that they’re not alone. Sport has transformed her life too. After spending years being excluded from P.E. lessons at school, she’s now competing at a professional level.

In this blog, Ellie shares her story and tells us why she’s dedicated to making sure that no-one else feels alone, like she did.

I was diagnosed with cerebral palsy just before my second birthday and my parents were told I’d never talk, walk, or function in a ‘normal’ world. Fast forward 22 years, and I do all three and even more! I went through mainstream education, achieving GCSE’s and A-Levels, and most recently a BSc, even though my parents were once told this was ‘impossible’.

Although I coped well academically, school began to get a bit difficult for me when I was around 13 or 14. That’s the age when kids start to form cliques and reject anyone who is a bit different. I felt lonely a lot of the time.

And it wasn’t just the students; teachers would actively discourage me from joining in with things. When we had a P.E. class the teachers would look at me and say: “Shall we go inside and do some homework Ellie?”

At the time, I went along with it because I was so self-conscious. My cerebral palsy is very obvious when I move and I wanted to stay inside and hide away.

Ellie, a young disabled woman, smiling at the camera
Ellie felt less alone after she set up CP Teens UK

I wondered if it was just me feeling like this

I realised that there was nothing out there for people like me, both socially and in terms of going out there and getting opportunities. I didn’t have the confidence to go out and get a job, and my friends all went off to university and forgot about me.

I felt like I was the only person on the planet feeling like this so I set up a Twitter account in the name of ‘CP Teens UK’ thinking nothing would really come of it. Then, the next day I woke up to loads of followers including Francesca Martinez and Sophie Christensen!

The response was amazing. People were getting in touch saying, “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. It made me feel less alone. I’ve met some really cool people.

Since then I’ve set up a Facebook page and a website and it just grew and grew and CP Teens UK became a fully registered charity in March this year.

Then sport opened up a whole new world for me too

Because I was discouraged at school, I avoided sport throughout my life. I wasn’t even aware that there were opportunities for disabled people in sport. Then, the Paralympics changed everything. Seeing disabled athletes at the top of their game made me realise what was possible.

I saw something on Twitter about a Paralympics GB Taster Day and I went along to see what it was like. It was an incredible day with an amazing atmosphere. When it came to sports, I’d always heard: “No, you can’t do that, it’s not safe” but now it was all: “Come on and have a go.”

Sport transformed my life and now I regularly train and compete internationally. I have just been selected for the 2018 World Cerebral Palsy Games in Barcelona. Out there on the track, being watched by hundreds of people, I am in complete control. As a disabled person, I don’t feel that way very often. Being cheered on by so many people who are all on your side is a powerful thing.

Ellie Simpson races an adapted bike on a race track
Ellie competing in RaceRunning

Hopes for the future

It’s important to let people know that they’re not alone. I set up CP Teens because 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.

Now I want to connect people through sport too. I’ve just finished a degree in Sports Coaching and I organise events through CP Teens. Sport is something that brings people together and I don’t want anyone else to be left out like I was.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

“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.