Tag Archives: whatineedtosay

Why I’m determined to make the world a better place for my daughter

The start of 2017 was a dark time for Christie. Her daughter Elise had just been diagnosed with cerebral palsy and without any support or information, Christie felt really alone. A year later, with a new positive outlook, she is a force for change. In 2018 she’s determined to keep making the world a better place for her daughter. In this blog, she shares their journey.

My daughter Elise was born prematurely and it was the worst time of my life. The doctors didn’t think she was going to make it but she did. I remember the first time she opened her eyes. After a month of being in hospital, we got to take her home and I was so happy.

The doctors said there hadn’t been any brain injury but she wasn’t developing as expected. So, after lots of meetings and nine months of waiting, we finally got a diagnosis of cerebral palsy, just before Christmas 2016.

I felt really alone

It was really overwhelming. I didn’t have any experience of disability and I thought it meant her life was over before it had even begun. I thought she’d have no future. I tried to be cheerful for her but my heart was breaking.

I didn’t want people to come over because I didn’t want questions. The first time I took her out in her wheelchair, I cried. I felt like everybody was staring at her. I had days where I just wanted to give up and lock us both away from the world.

That’s when I found out about Scope.

Christie holding up Elise in front of their Christmas tree

I’d been missing all the positives

I wanted to do everything I could for Elise so I called Scope’s helpline because I didn’t know where to start. They gave me so much information. I found out about what was available to us and the different equipment we could use. All these things have helped make life easier. But most importantly, Scope gave me so much hope.

They completely changed my perception of disability. It’s been a whole new life to get used to and I was just focusing on the negatives. Scope helped me to focus on the positives. I’d been missing them all.

You’ve just got to change the goal posts. Elise waving was a massive thing for us and, with her physio, she’s really building her strength up. She’s just got her Peppa Pig wheelchair which she loves and it’s given her so much independence – maybe too much as I recently found out in Asda when she kept wheeling off!

Christie on the sofa with Elise on her lap

I’m determined to change the world for Elise

I still worry every day about Elise’s future. I worry about people’s attitudes, I worry that she’ll want to join in with things but she won’t be able to. The world puts up so many barriers and you don’t realise it until you’re in that world. And it is a different world.

I’ve been sharing our story this past year and I want to keep going.  I feel less alone knowing that there is a community out there and people who care, people who’ve been in this situation.

We’re in a much better place this Christmas but life is still much harder than it needs to be. There should be more support but there’s not and accessibility is a big problem. Just because you have this diagnosis, doesn’t mean you don’t deserve a chance.

This year I want to keep changing attitudes about disability, I want to make things more accessible, I want to give Elise everything she needs – I’m determined that nothing’s going to stop her!

I started a Facebook page called Elise Smashed It. I want everyone to see what an amazing little girl Elise is. I hope it raises awareness and changes perceptions about disability. I want to help other parents too and show them that there is hope. It might not be the life you were expecting, but it’s not the end – it’s just the start of a different life and you’re not alone.

These are my goals and that’s what I’m going to focus on this year. I hope you’ll join me.

Too often, disabled people and their families struggle to access the support and information they need. Attitudes towards disability can be a problem too.

Christie shares her story because she wants to change that. Please help by getting involved with our What I Need To Say campaign and following Christie and Elise’s journey on their page Elise Smashed It. 

Smiiffy’s 7 tips for coping with isolation

Josh, popularly known as “Smiiffy”, is a rapper from Birmingham who is looking to challenge attitudes and raise awareness of mental health and disability. He did an Instagram Stories takeover for Scope on Friday, where he shared “What I Need To Say” posts throughout the day, and even wrote a special verse.

I have anxiety, depression and borderline personality disorder. I haven’t been in a good place in the past few months. My anxiety sometimes makes it difficult to be happy, even around my own family. It also means that it’s quite difficult to know what mood I’m going to be in for Christmas.

Josh sitting on a pub bench, looking into the camera

There are a lot of times I do feel isolated. I often find that I do it to myself because I prefer to be alone. I constantly feel alone in a crowd. Even if I’m surrounded by good friends, I feel alone. I sit alone for a while and think that I don’t fit in here. And I feel like I don’t fit in anywhere, which is really difficult sometimes.

Scope’s What I Want To Say campaign is important to me because I feel like Scope’s giving people the opportunity to have a voice and let me say what I genuinely need to say. Letting people know that they’re not alone, and that there are other people there who are wanting to listen to them is incredible.

As part of this campaign, I took over Scope’s Instagram on Friday 8 December, and am sharing my top tips for reducing isolation:

Smile

Whether it’s someone I know well, or a stranger in the street, one of my favourite things to do is just smile. I feel like if someone’s having the worst day, at least I’ve acknowledged them. Plus, it always makes me feel much better too!

A hug always helps

Hugs always make me feel good. Be it a friend, a boyfriend, a girlfriend, a cousin, a family member or whoever, it helps you forget about the loneliness, depression and anxiety you might be feeling for a while.

Social Media

Josh taking a selfie in front of a mirrorI always thought that I’d be lonely and I posted that on social media. That was the first time that I accepted my own mental health. Telling people how you feel on social media can help things improve.

I use it positively, to raise awareness and let people know that there is help out there. You can also be anonymous on social media and that can make it easier to talk about the fact that you’re struggling.

Find someone to talk to

For people that are lonely, there are a few community clubs and centres out there that are open for people on Christmas day. If people are alone, that’s definitely one thing that could help.

If you’ve got family around you but you’re still struggling, just trying to talk to people can help. In most families, there’s at least one person that understands, so if you can speak to that one person, then things can get easier. Just expressing your needs to somebody else will help in the long run, because they will find a way to help you through it.

Speak to organisations that can help

Josh (Smiiffy) wearing a Scope T-shirt

Scope have helped me massively. They’ve helped a lot of friends too. I’ve never really told anyone that I have Bilateral Perthes’ disease but through working with Scope and seeing the work they do, it made me feel confident enough to tweet about it. I feel motivated by Scope to raise awareness of invisible impairments, like mental health.

Do something you love

I think that a hobby, something you’re good at or enjoy, can help. When I started music, I wanted money, fame, popularity but then I released a song about when I was struggling called “Air I Breathe”. When I realised how many people it had impacted, I knew that was my calling.

Music has been hard because I don’t like the attention but I fought off my fears. If you have a talent and use it to create good things for yourself and inspire thousands of others, it can be life changing. I also like giving back to charity because as well as music, charity saved my life.

Smiiffy, a young disabled man, smiles by a microphone

Help raise awareness

Over the years thousands of people have messaged me and said positive things like “I love your music, you’ve saved my life” or “you’ve made me open up about my own mental health” which is incredible.

I want people to let people know that, if they’re struggling to talk or feel like they’re not going to be heard, speaking out about what you’re going through can really help.

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.

Poor accessibility can lead to isolation, but this theatre company is changing that

Pippa works on Scope’s online community and is also an accessible theatre blogger. The festive season seems to be filled with activities but when they aren’t accessible, disabled people and families are often left out. This can be very isolating. For our What I Need to Say campaign, Pippa spoke to Erin, whose company DH Ensemble is leading the way in accessible theatre.  

Going to the theatre is an experience enjoyed and cherished by many families, especially during the festive season. However, like many other activities, theatres and shows often fail to be wholly inclusive of disabled people.

Although the accessibility of venues is improving, content isn’t always suitable for people with specific disabilities. However, one theatrical company with inclusivity at its heart is The DH Ensemble (previously called The Deaf & Hearing Ensemble). I talked to Erin Siobhan Hutchings about their new show.

Based on Erin’s own experiences of growing up with her deaf sister, ‘People of the Eye’ features Deaf and hearing cast members and uses stunning visuals to create an immersive experience for all.

Accessibility is a forethought, not an afterthought

Accessibility is built into the aesthetic, so deaf and hearing audiences can enjoy the show on an equal basis. For example, we use integrated sign-language as well as creative captioning, so whether you’re relying on that to access a performance or not, it brings so much more to your understanding of the world and the characters. I think that makes the work so much more interesting. It adds layers to the narrative and the way that you tell the story and connect with the audience.

Whilst the show was primarily designed with D/deaf and hearing audiences in mind, we also strive to ensure that venues where the show are performed are wheelchair-accessible. The production team also take precautions to ensure that audiences are aware of the visual effects beforehand, by sending out resources including descriptions of lighting effects and images of the projections used to those who request them.

Two women on a stage in front of the words '2 player mode'

Being excluded can be really isolating

The story is about myself and my sister growing up but it could easily be replaced with many other disabled people’s stories. The crux of the story is about families, relationships and isolation, and how important it is that we accept each other.

Deafness isn’t necessarily a disability that cuts you off physically or intellectually, but it’s isolation that can really affect people who have hearing loss. It’s that inability to communicate in a social situation that can be really isolating and that’s something that I noticed with my sister growing up.

We’ve tried to really show that in a way that puts the audience in that position, so some feedback we’ve had from audience members is that maybe a hearing person might not understand everything that happens in the play but that’s an important experience for them to have, they get some insight into that feeling of isolation themselves.

What I would really like people to take away is a little bit of empathy about the way that other people live their lives, and some idea about isolation and communication and how important that is. Then hopefully they’ll take that out with them into the world and influence the other spaces they go into.

Making theatre more accessible

It’s important that we’re all realistic about the diverse world that we live in. We’re a co-led deaf and hearing company and we strive to maintain that.

People understand that it may not be possible to make every single show accessible for everybody, but if you’re open to discovering what can make your work accessible, that’s a start. It’s better to ask people who really live the experience and get their feedback. I went to an interesting discussion with deaf and disabled artists recently where this was addressed.

Accessibility shouldn’t just be a tick-box exercise – put on a British Sign Language (BSL) interpreted show and do one relaxed performance and that’s it. That’s not really exploring the depth of how we can make sure our theatrical environment and all aspects of our society are welcoming for everybody, and that people can feel equal to everybody else.

As accessible theatre continues to slowly improve, it is the innovative work of companies such as The DH Ensemble that are really making strides in helping to address isolation and ensure that theatre really is becoming more inclusive for all.

The DH Ensemble is led by Jennifer K. Bates, Stephen Collins, Sophie Stone and Erin Siobhan Hutching. You can see People of the Eye in 2018:

  • 23 March Harlow Playhouse
  • 26 March Arlington Arts Centre
  • 7 April Nottingham Playhouse

Find out more about DH Ensemble and People of the Eye and get involved with our What I Need to Say Campaign.

I had a good life but cuts to social care have left me completely isolated

Angela spent years looking for the right kind of social care and eventually she found it. For a while she enjoyed having complete control over her life and led a very active one at that. However, in the past few years, drastic changes to her social care have left her isolated. In support of our Christmas campaign, Angela is sharing her story.

My mum found out that I had cerebral palsy when I was two and a half. She took me all over the place to find answers and she was constantly fobbed off with “Oh your baby is just lazy”. When she did get the diagnosis they said, “She’ll never do anything, she’ll never speak”. Which wasn’t true and sadly it still happens to parents today.

But you can only thrive if you’re given the right support, and that’s often the biggest barrier to living a full life if you’re disabled. Something I know all too well.

Angela as a child on a blanket cuddling a big dog
Angela as a child

I was always searching for something different

I grew up in residential schools and when I became an adult the only option – other than living with my mother – was to live in a residential home. I hated the regimentation. There was no independence and hardly any choice. You had to get up at a certain time, do this, do that, you only had three choices for your meals.

We were very isolated. The nearest town was Colchester and that was 10 miles away. There were no opportunities, nowhere to go. There was a factory on the grounds so we worked there. I had my 21st birthday there, among all these people that I didn’t know. It was very lonely. I was always searching for something different but I didn’t know what it was.

Then, one day I came across an article about a place that had the vision that you might be disabled but it doesn’t mean you can’t own your life and live your life. This was the first time I’d heard that kind of attitude.

I managed to get a place there but it was scary to begin with. By this time, I was in my mid-30s and I was so used to people deciding things for me. Suddenly I had a lot of say in how I lived my life. I could choose when I wanted a bath, when I wanted to go to the toilet, I could go out quite a lot. It was life-changing.

Finally living as an equal

After a few years I took the next step and decided that I wanted to live in my own place. It took a while to sort it out but soon I was moving into my own flat for the first time. I had two support workers who lived in a flat upstairs and were available to support me 24-hours a day. Finally, I was living as an equal.

My support workers relieved me of my ‘disability’ by doing things that I physically couldn’t do and I was in control of what I did and when I did it. I could invite friends round and they didn’t have to get involved with anything – they just saw me as me and not a disabled person. But sadly, this new life didn’t last.

Angela in front of hills and a castle
Angela on holiday, something she used to be able to do with friends

Cuts to social care have left me completely isolated

I remember hearing there would be cuts and there were cuts. Over the last few years my social care support has changed dramatically and with it my life has changed for the worse.

The carers that come now only take me to use the toilet, prepare simple meals and do my personal care. I get half an hour in the morning, three quarters of an hour for lunch, half an hour in the middle of the afternoon, three quarters of an hour in the evening and half an hour around bedtime. It’s the same every day. Then I get 2 hours a week to do a shop and 2 hours for housework. It has completely taken away my independence and left me very isolated.

I can’t live a life now. I’ve lost many friendships. I can’t do most of the community activities I used to do. I can’t just get up and do things, be spontaneous. I have to think about the consequences of everything I do. I used to do a lot of campaigning but I can’t do that anymore. I virtually have no social life.

It’s a very lonely way to live. The social care system urgently needs to change. I have a right to live in my community as an equal.

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. 

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.

Millions of disabled people feel lonely, including me – let’s change this

Shani is an events manager, disability campaigner and entrepreneur from Walsall. She features in Scope’s new What I Need To Say campaign which highlights the isolation that millions of disabled people face. In this blog, Shani shares her own experiences.

At certain times in our lives, we are all likely to experience loneliness. We often talk about loneliness in elderly people but, as Scope’s new research shows, loneliness affects so many disabled people.

This can be down to poor access to services, inaccessible transport and venues, and financial challenges. When you face so many extra costs related to disability, it can stop you from being able to go out and do things like everyone else. That’s why I launched the Diversability Card – a discount card for disabled people.

Social attitudes are also a significant barrier. Many struggle to see the person beyond the impairment or condition and act awkwardly. One in four people have admitted to avoiding conversations with disabled people because they worry about causing offence or don’t know what to say. This really astonished me. Personally, I feel sorry for the non-disabled UK population who are missing out on interacting with 13 million of us fabulous people!

With so many barriers to contend with, imagine being a disabled person, experiencing the same life transitions as everyone else, but not being able to participate in the same way. No wonder disabled people feel lonely.

My own experiences of loneliness

Being part of the ‘What I Need To Say campaign’ by Scope made me really reflect about the times I have experienced loneliness or isolation, which has drifted in and out of my life over different periods.

As a young child, I attended a special needs school which made keeping in touch with friends very difficult as we lived miles away from each other. It also meant that I was sent to a separate school that my siblings, cousins, friends and neighbours attended. Whilst it was the best place for me because of the care I needed for my condition, it was hard to maintain friendships and any sort of social life.

Over the course of my childhood, I spent a lot of time in hospital with broken legs due to my condition Osteogenesis Imperfecta (brittle bones). I would be in hospital for a minimum of three months at a time, missing school and home whilst only having adults to really talk to. I was very lucky that I always had lots of family coming to see me during the visiting time, but this is such a short amount of time in what used to seem very long days as a child.

I’ve also experienced loneliness as an adult, being excluded from social situations or activities due to my condition or people making assumptions about what I am able to do, or not. It’s really frustrating, especially as I’m a very independent person who will always find an alternative way of doing things.

Shani smiling, stood on a cobbled street

Ending loneliness

I feel that increasing the awareness of different conditions and dispelling misconceptions about disability are major steps in combatting the ‘silent epidemic’ of loneliness and isolation.

Also, if you are a friend or family member of a person with an impairment or condition, take a moment to consider how they might be feeling, especially around this festive time of year. It can be as easy as making a quick phone call or popping in for a cup of tea to brighten someone’s day.

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.

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.