Tag Archives: isolation

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. 

Dyspraxia and social anxiety: why I’m not hiding anymore – End the Awkward

Guest post by Rosie, who has dyspraxia, which affects her movement, balance and sensory processing. For End the Awkward, she talks about feeling different, her journey to acceptance and how she stopped hiding.

I’ve always been aware of how differently I learnt and how tasks which everyone else found really easy took me so much longer. At the age of 4 I was diagnosed with dyspraxia, an invisible difference which is still very misunderstood. Dyspraxia is thought to be caused by a disruption in the way messages from the brain are transmitted to the body. This affects my ability to perform movements in a coordinated way, balance, motor skills and sensory and emotional sensitivity.

Every person with dyspraxia is affected differently. Even though I’ve always been very determined, I was also very shy and self conscious. I hated being centre of attention and any fuss made feel uncomfortable. I really struggled making friends as everyone was very different to me.

People didn’t understand

The lack of understanding which surrounds dyspraxia didn’t help at all, a lot of people didn’t and still don’t know what it is. I was misunderstood, judged and negative assumptions were made about me. I was called clumsy, careless, stupid, lazy and told that I simply wasn’t trying hard enough.

If you had asked me to describe what dyspraxia was and how it affected me I would have avoided the subject completely. I just didn’t know how to talk about it and was scared that people would run a mile if I disclosed to them. Awful bullying and ignorance at work had left me too anxious to speak, struggling with social anxiety and in a dark place.

Feeling different

A common theme for many dyspraxics is feeling different and struggling to make and maintain friendships. Over the years I’ve beat myself up a lot and wondered why I couldn’t be as socially confident as others, which is an ongoing challenge. I struggle with managing my emotions and can be prone to panic attacks and sensory sensitivity, which means the environment around me can be very overwhelming.

I’ve also spent a lot of my life hiding. Hiding from situations or environments which either triggered my anxiety or where I’ve felt uncomfortable. I concealed my  dyspraxia and social anxiety which lead to me experiencing depression. For ages I thought it was just me being me.

Rosie dressed up for an event

Anxiety was taking over my life

Social anxiety made me feel in constant worry that I was going to embarrass or make an idiot out of myself. I worried that I would have a panic attack, experience sensory overload in public or say something that nobody “gets”and have everyone laugh at me.

Then there’s the constant worry that you’ve done something to upset someone and that people hate you and are simply putting up with you. When you’re anxious your whole body can tense up, you can start feeling sick and you can struggle to give eye contact, which is hard enough when you’re dyspraxic. It was easier to avoid doing anything or going anywhere.

After hitting a very low patch I realised I couldn’t  go on like this. Anxiety was slowly taking over my life, stopping me enjoying the things I loved and leaving me fearful, low and constantly on edge, unable to sleep and with zero confidence and self-esteem. The more anxious I became the more clumsier I was and the more mistakes I was making and the more I beat myself up. It was a vicious circle.

Meeting others helped me stop hiding

I got involved in Dyspraxia Foundation where for the first time I felt like I could be myself. Nobody judged me if I made any mistakes. I met others who were dyspraxic and I didn’t feel so alone. I began to learn about how dyspraxia affected me but also the strengths which dyspraxia can bring, which to me are being caring, creative, able to think outside of the box and I’m a very determined soul.

By spending so much time hiding I wasn’t showing the world all of Rosie and I was missing out on so much. With the support that’s out there, I’ve been able to achieve a degree and a masters degree. I’m also learning strategies to help me cope with day to day life and support my mental health.

Ending the Awkward

I’ve been able to help others by writing blogs and raising awareness, helping them feel less isolated and alone. It’s given me more empathy when supporting students in my job as a learning support assistant. I’m determined that nobody should go through or feel what I have. Learning to be kind to myself is something I’m still working on but I’m fighting my fears one little step at a time.

That’s why I’m getting involved in Scope’s End The Awkward campaign. Disability and difference is nothing to be scared of – we’re human beings with feelings. A little bit of patience, time, and kindness can go a long way. Nobody deserves to be made to feel embarrassed or ashamed of being different. After all, wouldn’t the world be such a boring place if we all were the same? You never know what you might find out when you take the time to get to know someone.

You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.

To read more from Rosie, visit Rosie’s blog.

Setting up a disability community gave me a sense of belonging – Sam

30 under 30 logo

This story is part of 30 Under 30.

 

Sam is a student at Oxford and a Scope for Change campaigner. She is the current President of Oxford Students’ Disability Community and a founding member.

As part of 30 Under 30, Sam talks about the difficulties she faced when she started university, feeling isolated and how setting up a disability community changed things. 

For as long as I can recall, I’ve had a hearing loss. I remember my mum telling my teacher on the first day of school that I couldn’t hear well, and I got my first pair of hearing aids when I was 7. Despite my hearing loss I’ve always been in mainstream education, and coped pretty well. I never had any trouble with the work, made friends easily, and my hearing loss was largely an afterthought. This changed drastically when I left for university.

For the first time I began to think of myself as disabled

The switch from a small classroom environment was jarring, and I found I couldn’t hear at all in lectures. At school I’d been taught by the same teachers for years, but at university I had new tutors every term and not all of them understood my hearing loss. The majority of socialising took place in pubs, bars, or at dinner with the rest of my year group – I had a great group of friends, but spent most of our time together desperately trying to pick out their lost words from a solid wall of sound.

I didn’t know how to ask for help, and I felt like I was the only person struggling. At the same time my hearing began to deteriorate faster than it had ever done before, and at the end of my second year I found out I was now profoundly deaf. For the first time I began to think of myself as disabled.

I was becoming increasingly isolated

I’d never known anyone with a disability growing up. I’d met one other deaf person at university, but nobody in our social circle was disabled. I found myself becoming increasingly isolated – I couldn’t talk to my friends about losing my hearing as they had no experience of it themselves, and it was less upsetting to stay in on my own than to go out and struggle to hear the conversations. I was desperately unhappy.

Sam smiling, holding up a sign that says We Unite

Setting up the Oxford Students’ Disability Community

About a year and a half ago, one student at the university sent round a Facebook message inviting other students with disabilities out for a drink and a chat at a local bar. I didn’t know anyone, but I decided to go. About 20 other students turned up, and when we got talking and it was like a light had been switched on.

All of us were having a hard time, with tutors and peers not understanding our disabilities, and some of us had been experiencing discrimination because of this. Before, we’d all been convinced our troubles were individual, but it was now strikingly clear that this was a problem for many other disabled students at the university. We banded together, forming a working group of disabled students – the Oxford Students’ Disability Community (OSDC).

We began to spread the word, communicating with the university to improve support for disabled students, running social events, and starting a Facebook group where students with disabilities, mental health conditions and specific learning difficulties could ask each other for advice or support. We became the student union’s official disabled students campaign, and before long we found ourselves with a community of more than 400 people.

I no longer feel alone

For me, that sense of community is so important. So many of us had found ourselves isolated by our disabilities and the way others responded to them. I had never felt more alone than when my hearing began to decline, but once I began to meet other disabled students I realised I was anything but.

We have a wealth of shared experiences and whilst our disabilities are different, I’ve found we can relate to each other in ways no one else has done before. That understanding is so important in a culture that so frequently ignores and alienates the disabled, and I feel so grateful to have found it. OSDC has given me some of my closest friends, helped me find my voice as a disabled person, and fostered an overwhelming sense of belonging.

To find out more, visit the Oxford Students’ Disability Community’s website. 

Sam is sharing her story as part of 30 Under 30. We are 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.