Tag Archives: cerebral palsy

No one expects to find out they have cerebral palsy at 60

Meet Paula, who contacted our helpline after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support.

In January 2015, soon after my mother died, my sister called me and told me I should see my doctor as there was ‘something I should know.’ I went to my GP and asked him to read me the medical notes from my birth. He told me that I had mild cerebral palsy.

I’m 60 years old, and I had known nothing about it until then.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Sadly, attitudes still need to change.

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

Paula and her baby son
Paula and her son

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Scope’s support

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. With her guidance, I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

Paula and her husband
Paula and her husband, who have just celebrated their Ruby wedding anniversary.

Life today

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask. I’m finally making up for lost time. I’ve now got the confidence to try new things; I go to Tai Chi, I swim and I am a bell ringer.

 I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling.

Excitingly, I’ve recently become a grandma. This got me thinking about my own experiences and how much things have changed. What happened to me – my disability being brushed under the carpet – I wouldn’t want to happen to any child today.

Our helpline is only possible thanks to donations from supporters.

You can help us be there for disabled people and their families by donating to Scope today. Your gift can support services such as our helpline, offering vital information and guidance to those who need it – whether 6 or 60.

Joan Ross: A life remembered, 1939 – 2017

Joan Ross, a contributor to Scope’s Speaking for Ourselves project, died in January. Born with cerebral palsy in 1939 (when disabled children didn’t have to have an education), she went on to become  a language teacher, girl guide leader, advice officer for 17 years at Haringey Disabilities Consortium and a published author.

Using extracts from her interview in the British Library Sound Archive, we celebrate her life.

Going to schoolJoan as a child in a black and white photo

“My mother took it for granted that I was entitled to education like everyone else… She wanted me to be able to read so that I could read to myself and so on. She saved for me to go to a little private school very near where we lived, but they refused to have me so she tried the local infants school that was all on one level, and they were very reluctant. The headmistress did want to take me, she was willing to have me, but the education authority weren’t happy about me going and I didn’t have to go to school; it wasn’t compulsory.

So my mum decided to go to the education offices every day to ask them when they were going to find a place for me at this school she had in mind, and one day when she went she heard one of them say, ‘That Ross woman is here again’, and so she said, ‘Yes. And I’ll be here again tomorrow until you offer me a place for my daughter at school’.

So they did agree to place me in the school that she’d chosen, on condition that she came there and took me to the toilet twice a day, maybe more, fed me at lunch time; the teachers would teach me but nothing else, no personal care. But she was willing to do that and I was very happy there.”

Brownies and Guides

“We had a uniform which made me feel one of them. Our school icwbicc-24didn’t have a uniform so I enjoyed having an identity. I enjoyed the badge-work in Guides because that was way of proving myself.

“We didn’t really take a lot of exams and that at school, so this was a way of stretching myself and proving myself. The Guides, once they realised that I was just the same as them, except I was in a wheelchair, accepted me and I really felt one of them.

“After I left school. I was still in the Rangers, the senior part of the Guides, and one of the things the Rangers did was help with Cubs and Brownies, so I was delighted when I was asked if I would like to help with a Brownie pack, and I did that for about a year, or maybe longer. And then my own church Brownie pack was without a leader and I longed to offer to take over the pack but I didn’t want to do that because I didn’t want to be turned down. So I was delighted when I was approached to actually do that, and I did it for 15 years.

And it really compensated for not working because it gave me an important job to do which took a lot of time but was very worthwhile.”

Looking for work

“I kept on looking out for jobs. I went to a few interviews and some of them were better then others, but nothing very promising.

“There was nobody to advise me. I went to the job centre to see a disablement resettlement officer, but she really didn’t seem to have a clue how to help me. And so I just looked up jobs and I wrote to the Director of Social Services in Haringey and I did have an interview, which looked quite promising…

“They wanted to set up an advice and right centre for handicapped people in Islington in the day centre, which would deal with telephone enquiries on benefits and also lots of problems relating to disability.

“And I applied for that job and got it and it was an amazing experience.

“I wasn’t teaching but I was helping other disabled people and
carers and expanding my knowledge all the time. I went on training courses and the project was managed by the Citizens’ Advice
Bureau so we were able to go to their training courses as well.

“And the scheme lasted the year and… they hoped that they would get more funding for it to continue but when the year was up no funding materialised, at a time when the centre – it was called ARCH [Advice and Rights Centre for the Handicapped] by the way – and it was really making very good progress and helping a lot of people, and we just couldn’t abandon it because the project wasn’t being
funded. I had another worker – there were two workers on the scheme – the other person was disabled as well, he was called Melvin, and we decided to carry on working for ARCH voluntarily for another year.”

Joan’s commitment to her community then led to her being an advice officer for 17 years at Haringey Disabilities Consortium.

To hear Joan’s interview in full, go to the the Disability Voices website at the British Library Sound Archive.

Joan Ross and Lynda Bellingham
Joan Ross and Lynda Bellingham at the launch of Joan’s book

Read Joan’s autobiography, I Can’t Walk, But I Can Crawl.

 

“This child is spastic. Take her home.” – Disability History Month

Dr Lin Berwick MBE, counsellor, lecturer, journalist, broadcaster, homeopath, Methodist preacher is 66. She is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Lin remembers how a doctor labelled her as ‘spastic’ and encouraged her parents to have another child. 

“This child is spastic. Take her home…”

When I went blind

Lin went to a school for physically disabled pupils. When she lost her sight, she was bullied.

“When I went blind, the kids at the school were really nasty and I went through some horrible jeering and bullying, and people laughing at me because I walked into things. You know, I went to walk through a door that had glass panels and, because I could see the light through I thought the door was open, and of course it wasn’t. I sort of smashed my face, and then I walked into a brick wall and things like that, and hit my face again and I had tripod sticks poked into, and walking sticks poked into my face and handfuls of mud rubbed into my face, and kids saying ‘Can you see that, then, Berwick?’ It was horrendous at a time when you’re really frightened, because you’ve now suddenly got a new disability which you don’t know how to handle.”

‘Telephonist required’

Lin Berwick on phone
Lin Berwick on phone

Finding a job was another barrier Lin had to face. 

“When I got to the bank, it was one of these banks with these horrible revolving doors, which wasn’t easy, going through on a pair of tripods. Eventually, I found my way into the bank, and made my way to the accountant’s office, and when he opened the door he, said, ‘Oh, I know they told me you were disabled’, he said,’ ‘but I didn’t realise you were that disabled, but you might as well come in and sit down anyway’, and I thought, ‘God, this is a really good start to your first job interview!’ But I thought, ‘Well, I’m here. I’ve got one chance, so I might as well really go for it’, and he took my mother around the bank, showed her some of the obstacles, and we came back into the office and we started to talk about the work, and he proceeded to ask my mother every single question about my training.”

Becoming a Methodist preacher

God's Rich Pattern: Meditations for when our Faith is Shaken
God’s Rich Pattern: Meditations for when our Faith is Shaken

Even in her spiritual life, Lin faced prejudice when she tried to follow her vocation and become a Methodist preacher.

“The Secretary of the meeting said, ‘I think we’re going to have a problem with you.’ I said, ‘Oh yes! Why’s that?’ ‘Well, due to your disability, I don’t know how you’ll cope with the public speaking,’ so I said, ‘Well, as someone who’s done over 300 radio broadcasts, I don’t think you’re going to have a problem.’ ‘Oh,’ and he said, ‘And I don’t know how you’ll cope with the academic study.’ I said, ‘Well, I have ‘O’ levels, and I have the equivalent of a degree in Psychology.’ He said, ‘Oh, you can learn then!’ and I thought, ‘God, if this is the kind of prejudice I’m going to get, this is just amazing stuff,’ and I said, ‘Yes, I can learn’ and he said, ‘And then we don’t know how you’ll cope with the access to the church buildings,’ and I said, ‘There, I’m prepared to admit you have a problem, but maybe together, we can work at it.’”

Listen to Lin’s life story on the Disability Voices website.

Books by Lin Berwick

Find out more about the Lin Berwick Trust.

Read the rest of our blogs for Disability History Month

I wish my dad had been able to see changing attitudes towards disability

Recent words from RJ Mitte and Alex Brooker have had a huge impact on Andy Bundock, whose late father was disabled.

In this guest blog he praises them for how they’ve been speaking about disability, creating acceptance and understanding that he wishes had been there in his dad’s lifetime.

During the Channel 4 coverage of the Paralympics in Rio, Claire Balding had a number of guest presenters with her. One of her co-hosts managed to explain exactly what Cerebral Palsy was in about three sentences. He managed to sum it up in such an eloquent and easy to understand manner. It was only afterwards that I found out that his name was RJ Mitte (apologies, I never got in to Breaking Bad).

I noticed his slight speech slur, this man clearly had Cerebral Palsy. It was very similar to my late father’s. It completely took me by surprise and I burst in to tears. Quite an extreme reaction you might be thinking. Here’s why.

It saddens me that my dad never got to see this

My initial reaction was “Yes, finally. Someone explaining it! And, on the telly.” Perhaps people will start to understand. I wanted turn to my dad and say “Look dad” but he wasn’t there, it didn’t happen in his lifetime. This saddened me so much, to the point of tears.

Not only was someone taking the time to explain a disability, there were disabled people presenting prime time TV and being accepted for who they are. My dad never got to see this. There was also the added emotion of missing my father. Hearing RJ speak in a similar manner just tipped me over the edge.

I contacted Channel Four and asked them if that clip was available so that I could share it on social media. I really wanted to share it and have more people understand. Unfortunately it wasn’t. But then Alex Brooker’s emotional outburst on The Last Leg happened.

On an episode of The Last Leg, Alex Brooker’s emotional outburst to the audience and to us at home had so much impact. He totally smashed it out of the park. When he drew that emotional breath at the end of it and got a hug from Josh Widdicome my heart went out to him.

Thankfully, this clip was available and when I went to share it on social media, I was so glad to see that so many of my friends had already shared it.

Alex did so much to make people understand what it is to be a disabled person that night. Only with more understanding can we move on together and gain more acceptance of people’s abilities as well as their disabilities.

My parents faced discrimination and ridicule

I grew up in a time where there was little or no mainstream understanding of cerebral palsy – what it was, how it affected people. Both of my parents have / had mild forms of the condition and were on the receiving end of discrimination and ridicule.

They were ‘advised’ not to have children, and it was nothing to do with their ability to conceive. Those bits and pieces were all working just fine. Their ability to raise a child was brought in to question. They also were asked to leave restaurants as they ‘were upsetting other diners’.

But my father was a real fighter. He stuck two fingers up at the world and said ‘I’ll show you’ every single day of this life. He said, I can make one of those and mine will be better.

The lack of understanding affected me too

A lack of understanding breeds fear, particularly in kids of school age so I was a target. I got in to fights and subsequently detention simply for protecting myself and my parents from nasty name calling and ridicule.

This upset me even more, the injustice of it all. I didn’t know how to handle it; I was a teenager struggling to deal with hormones, puberty and spots. But where was the protection from the school? I would very much like to think that this kind of behaviour is not tolerated in schools any more.

Andy's dad holding him as a toddler

My father was a brilliant dad

My father told me he was proud of me every day. He was a brilliant dad and I am so proud of his achievements as a father and as a person. He was an amazing photographer and inspired me to go into graphic design as a career. I got pretty good at it too, all down to his influence.

Alex Brooker mentioned his concern about how he would hold his baby should he and he wife be blessed with a child. This photo of my dad holding me was taken in about 1970. It is the only photo I have of the two of us – he was always the other side of the camera. You can’t keep a good man down, even when they are told that parenting probably wasn’t for them.

If you have a story you would like to share, get in touch with the Stories team.

From callipers to climbing Ben Nevis – Disability History Month

Mountaineer and writer John Hawkridge is 68. He is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, John remembers when he could run as a child and how in later life he tackled Ben Nevis.

Wearing callipers

John as a boy sitting on a step
John as a boy sitting on a step

Unfortunately for me I got selected to be fitted with iron callipers. So all of a sudden you find yourself in leg irons, and you know from being able to run, they’ve put you in these leg irons, and you can hardly stand up, never mind run. And they put you in them, and they tighten all the leather straps on you when you’re in. You know, it’s basically, it’s just a form of torture; they’re just forcing your joints against what they want to do. And so, you find yourself, you might be wearing your callipers ‘x’ amount of hours a day. Now bearing in mind I could take these callipers off and run, and run, hop, skip and jump, that weren’t something that I enjoyed at all.

Climbing Ben Nevis

John Hawkridge
John Hawkridge

By seven o’clock I was out and away, and heading up Ben Nevis. Initially there was no one else about, and I had the route to myself, but as time progressed it wasn’t long before people started overtaking me. Throughout the day I made really steady and positive progress, and up through a place known as ‘the Red Burn’, and then the massive, steep zigzagging path that went to the sort of summit ridge, or plateau, and then finally across this, where there were still snow and an ice field to be crossed towards the summit, and I ended up, I arrived on the summit about four o’clock. There were a few people there, and one that stood out was an American chap who, when he saw me coming, started dancing up and down, shouting, ‘What the Hell? I’ve flogged my so-and-so guts out getting to the top of this mountain, and what do I find when I get here? A so-and-so cripple. You’ve ruined my day.’ At which he screwed his stars and stripes up, shoved it back in his rucksack, and stormed off muttering to himself; ‘And I don’t know how the hell I’m going to get back down again,’ and I leant over and shouted to him, ‘That makes two of us!’”

Hear about John’s descent of Ben Nevis with broken walking stick and boot.

Rock-climbing films

In the mid-1970s I’d bought a good-quality Super Eight Cine Camera and had made films of some of the walks that I’d done and rock climbs; the two walks which I’d filmed being the Three Peaks of Yorkshire and the Dales Way – a 100-mile walk from Ilkley to Bowness on Windermere, and also I had some quite good shots of me rock climbing at Ilkley and Brimham Rocks.

In the late seventies I had been showing these films at various places, you know, if I had to entertain anywhere I’d take along me Cine and compiled a film and showed these films. And the fact that I’d been doing these activities had come to the attention of Yorkshire Television who sent a producer/director out to see me, with a view to making a film, and I remember well as he watched this Cine film, an half-hour film that I’d put together, and when it had finished he says, ‘This is absolutely fantastic, this is absolutely brilliant,’ he said, ‘but unfortunately we could never show this or make a film about this, because the public wouldn’t be able to take it…’

Climbing Everest

Books by John Hawkridge

Uphill All The Way book cover
Uphill All The Way book cover

His first book Sticks and Stones was published in 1987. This was followed by Uphill All The Way in 1991.

Listen to John’s life story on the Disability Voices website.

Find out more about Disability History Month on our website.

My brother used to carry me on his back to school: Disability History Month

Alan Counsell is 79. He is one of a number of older disabled people who contributed to the Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Alan remembers his struggle to get an education and find a job:

Being carried to school

The Headmistress at the school had refused to take me, and my Grandmother was formidable, absolutely formidable, where I was concerned: and through that visit I got to go to school, with the rest of the family; and my brother, can you imagine this –  I thought nothing of it until I got older. I was five; my brother was about nine. He used to carry me on his back to school in the morning. Came for me during playtime, that means he carried me around because I couldn’t walk; carried me home at lunchtime, carried me back after school after lunch, and carried me back after school in the afternoon. That’s a bit much, you know, for a nine-year-old, to carry a five-year-old, and he did that every day and never complained.

I wanted to be a librarian

I wanted to be a librarian, and the careers officer Mr Jolly said, “No way, no way, could you ever do anything like that,” and what came back was a voice from the side, and that was the headmaster, who said, “Now then, how can you say that, because you don’t know our Alan: he can do whatever he wants.”

Working in a subnormality hospital

In the end, I got into trouble one day, big trouble, and I was absolutely furious because of my own experience. I couldn’t stop thinking that had the education authorities have had their way, when they said I was mentally defective, I could have ended up as a patient in that hospital; and that was a rather daunting thought: and they had a block, a ward, called ‘H Block’, and, you know, they had ABCD wards. H was a ward for low-grade patients; that meant their intelligence was very low, and they also had behaviour problems. Many of them had to be restrained for a time; every student had to do at least one month on H Block, and my first day there I just lost it. I went into orbit, oh, terrible. We had to feed the patients, and the staff on the ward got a main course and a dessert and mixed them both together, and fed it to the patients. I couldn’t do that. I kept thinking, ‘This could be me’, you know, ‘this could be me’. There’s no way I’d want my food like that: so I refused to do it…

Alan Counsell at desk
Alan Counsell at desk

In 1969, Alan became a teacher at Meldreth Manor School. He continues to have a keen interest in education, through visits to schools and through his writing and training.

Listen to Alan’s interview on the Disability Voices website.

Books by Alan Counsell

“All disabled women should be sterilised” – Disability History Month

Psychotherapist and writer Antonia Lister-Kaye is 85. She is one of a number of older disabled people who contributed to The Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Antonia looks back at how attitudes have changed to disability during her extraordinary life.  

I was kept in a chicken incubator!

Antonia with nanny
Antonia with nanny

My mother was a Christian Scientist, and she didn’t like doctors. I think it was explained to her that we must at least have a nurse. My father got a chicken incubator from his brother, who was a farmer, rushed to the house, and I never went to hospital. I was kept in a chicken incubator in my father’s study, and they did have this nurse, that was a compromise, but my mother didn’t see me for weeks and weeks, because she was quite ill. I don’t think she wanted me anyway. I know she didn’t, because she was only very young, and, you know, didn’t know much. She wouldn’t have had me if she’d known anything. But I think that’s how I came to be how I am.

“All disabled women should be sterilized.”

My mother-in-law was absolutely furious because I had a disability, and she thought it was genetic. A fortnight before my baby was born, she suddenly said, ‘Well, you know, personally, I think all disabled women should be sterilised.’

Teaching in a night school under Apartheid

Former South African President Thabo Mbeki
Former South African President Thabo Mbeki

One of my students, for a short time, was Thabo Mbeki, the former President of South Africa. He was a very clever man, and he was a very beautiful man, too. He was about 19, I suppose, when I taught him. We followed syllabuses from London External Examinations. You could do exams which were called ‘London External Degrees’, in those days, and we based our teaching on those. I taught History, and they were all mad keen to do the French Revolution and the feudal system, that was their two favourite topics… I think I only taught him for a short time, but there were equally interesting students, but he was the cleverest.

Hear more of Antonia’s experiences of the apartheid regime. 

Legalise cannabis campaign

Antonia smoking a joint in a Amsterdam cafe
Antonia smoking cannabis in Amsterdam

My naughty daughter, Frankie, used to get hold of cannabis; this was in the seventies, and bring it home and smoke it, so I said, ‘Oh hey, give us a go,’ and because I knew people who smoked cannabis in the fifties, in Hampstead, you know: well, they do everything in Hampstead, before they do it anywhere else, and so she gave me a joint, and I smoked it.

I did, I’m not a smoker, so I didn’t inhale properly, but I said, ‘God, Frankie, the pain’s dropping out of me fingertips,’ and so she said, ‘Oh Mum, isn’t that interesting? Have another one. I’ll roll you another one.’ … and after that, I read an article, in The Independent, written by somebody with MS, called Liz, who lived in Leeds, and she wrote about the marvelous effect of cannabis on her MS, so I thought, ‘God, I must find out more about this lady…’

Listen to Antonia’s life story on The Disability Voices website.

You can also buy Antonia’s memoir, Broccoli and Bloody Mindedness on Amazon. 

Read the rest of our blogs for Disability History Month.

Not a superhuman? Never feel guilty for not doing ‘enough’

Anna Scutt is an actor, singer and hypnotist. In this blog she writes about the impact that adverts like ‘Meet the Superhumans‘ had on her, and how she’s come to accept that it’s okay to admit you’re not okay.

That ‘Meet the Superhumans’ advert. It, and programmes like ‘Disabled Daredevil’, used to make me feel inadequate for not doing something amazing like a bungee jump or a triathlon.  Until two things happened last weekend to change my mind.

One, I read Kim Daniel Daybell’s blog ‘You don’t have to be an athlete to be superhuman’, and two, I got talking to a man sitting next to me at the theatre.

“How does your CP actually disable you?”

He was very impressed that I had come to London on my own.  In the course of conversation, I told him I had also been to Milan to the opera, and that I’d sung in opera myself at university.  At which point he asked ‘Forgive me, but how does your cerebral palsy actually disable you?’

That made me think. Things that I consider ordinary – I drive, I sing, I’ve got a language degree and can watch all those Scandi-noir dramas without subtitles – non-disabled people consider superhuman because they realise that those things are way more difficult for me than they would be for them. They’re not being patronising, they’re just being non-disabled. He was genuinely interested though, so I answered his question: I am in constant pain. I didn’t tell him I hate it. And it took me a long time to admit it, but it’s OK to hate it.

Anna acting on stage. She sits on a mans knee, turned towards each other, in period costume
Anna playing Gwendolen Fairfax in The Importance of Being Earnest, with Paul Henshall as Jack Worthing

Never feel guilty for not doing ‘enough’

There are so many inspirational stories on the internet that not being OK with my CP made me feel like a failure.  But who doesn’t hate being in pain? That doesn’t make me a failure, it makes me human.

All these inspirational people tell you that you can do anything you put your mind to, but actually, ‘Yes, I can’ might not apply to you.  And that’s OK too.  I mean, it sucks, but it’s nothing to be ashamed of.  I want to dance – tap, jive, quickstep – but my body doesn’t.  I am an actress and I would love to be in a lavish costume drama, but there aren’t many wheelchair users in Jane Austen.  Feel sad about it, feel angry, but never feel guilty.

Anna smiling at the camera in her wheelchair

If you want to play sport, opportunities have improved thanks to the Paralympics.  But if you don’t, nothing much has changed.  Coronation Street did more to raise awareness for me.  I used to get glared at in public if I got out of my wheelchair and walked, as if I was faking my disability. (I blame Little Britain’s Lou and Andy!)  But since Izzy Armstrong stood up out of her wheelchair at the bar of the Rover’s, the glaring has stopped.

Equality is still some way off, but it’s OK not to be a trailblazer or an activist. Someone else will raise awareness; someone will take that inaccessible shop to court, but don’t feel guilty if it’s not you.

You’re only human, after all.

If you want to find out more about Anna’s career, check out her webpage or watch her showreel. 

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

 

“I hate it when people fake” – and other things you hear as a part time wheelchair user

Chloe is a student and blogger, creator of Life as a Cerebral Palsy student and an Ambassador for CP Teens. 

She has mild cerebral palsy, seizures and sometimes uses a wheelchair. For End the Awkward, she talks about some of the awkward moments this brings and how a balance of education and humour is the way to improve attitudes.

People often think I’m drunk

I’ve had various nights out where people thought I was completely wasted. I have cerebral palsy but I can walk unaided, with my stick. On a night out I don’t tend to wear my splints. I probably look ‘normal’ when I’m sat down and when I stand up people are shocked. People assume that, because I’m on a night out with friends, I’m drunk, when actually I can’t drink a lot with the medication I’m on anyway. At most, I might be a bit tipsy but bar staff will say “Oh you’ve had one too many”.

I tend to go one of two ways – I either make a joke, like “Oh yeah I guess I am… wonder why I’ve got this stick though” or I just say “Well actually I have cerebral palsy, I’m not drunk”. To which they’re usually like “oops”.

Misconceptions about wheelchair-users

Once, I was out clothes shopping with friends and I was in my wheelchair. My friends went one way to look at something and I was looking at a dress. It was on a higher hanger so I was leaning forward, not even standing up, just reaching and this woman looked at me and said “Ugh I hate it when people fake.” I was thinking “What?!” and obviously my friends weren’t there to back me up. I said “Excuse me?” and she said “Well you know, all these people pretending” and I said “Do you know what a part time wheelchair user is?” and she still didn’t believe me. I was just a bit speechless so I just went in the opposite direction.

Should we carry you down the stairs?

I’ve been at a restaurant where there were stairs to go down and the waiter came over like “We could carry you down the stairs?” so I said “I’ve got my stick, I can get down myself if that’s okay” and he just stared at me. I was like “I can walk. I may be exhausted by the time I get to the table but then I can sit down for the meal and I’ll be fine. And he was like “Oh… okay… so do you want me to carry your chair” and I said, “Well yes, that would be very helpful”. I’m amazed by how many people still think you either use a wheelchair all the time or you don’t, or you can either walk or you can’t.

Photo of Chloe in her wheelchair, wearing her leg splints

Fear of the unknown

Because I also have seizures I get avoided quite a bit – people don’t want you to go unconscious on them! It can happen anywhere, like in the middle of busy city centres! There can be warning signs but it varies. I have three different kinds of epilepsy. It can range from “Sit me down now, I’m about to pass out” to no warning whatsoever and I’ll just fall.

I definitely think it’s more a fear of the unknown that anything else. People aren’t sure what to do if it happens so they don’t want to be in that situation. There are so many different kinds of seizures. People think about the ‘typical seizure’ but a lot of mine aren’t like that. So they don’t really know what’s going on. Their instant reaction is to call an ambulance or stare at me, neither of which is helpful. I rarely need medical intervention.

There’s no need to avoid me though. Once I collapsed on one of my friends and she wasn’t sure what to do but I came round and it was fine. She knew that I had seizures but she’d never actually seen one until then. She just joked “A warning would have been nice!” and now she’s used to it.

Ending the Awkward

I think you have to use it as an opportunity to educate people but maybe with a slightly humorous twist. You don’t want to be too serious because I think they’ll just go “Right I’m avoiding doing that again ever in my life”  but if you laugh it off too much they might not realise that what they’ve done is bad. It’s about getting that balance right.

To hear more from Chloe, visit her blog. 

Read the rest of our End the Awkward blogs, or get involved in the campaign by submitting your awkward story. 

My job at Goldman Sachs is a holiday compared to the pressure of the Paralympics

Five-time gold medallist Sophie Christiansen is competing in her fourth Paralympic Games this summer. The equestrian won three of her gold medals at London 2012 with her horse Janeiro 6 so expectations for Rio are high.

In this guest blog post, Sophie, who has cerebral palsy, talks about witnessing first-hand the growth of the Paralympic movement and how she handles the pressures of competing at a top level.

My family isn’t at all horsey. I don’t think I would ever have ridden if I hadn’t been disabled.

I started riding when I was six with the Riding for the Disabled Association to improve my coordination. When I was about 13 I found out about dressage and I was hooked. When I’m on a horse I can forget about my disability and I can compete on a level playing field with other disabled people.

The riding school where I learnt dressage, South Bucks RDA, had a history of training Paralympians so they were looking out for talent from the start.

Being selected for Athens in 2004, aged 16, was incredible. I was ParalympicGB’s youngest athlete. I learnt such a lot from that first experience of the games.

To be selected for my fourth Paralympics this year is a huge honour. I’m only 28, but I’m seen as a Paralympic veteran!

Changing attitudes

The Games have changed so much since my first time in Athens. The standard is so high and there is a lot more interest.

We’d be used to competing in front of 200 people – that would be a big crowd – but then in London there were 10,000.

In Beijing there was a lot of interest from the public and we attracted a really big audience. But there was so little media coverage. I won my first Paralympic gold medals and it hardly got a mention.

I think attitudes have changed. There was a lot expected of London in terms of changing perceptions and I think it did achieve it, to a certain extent. It showed disabled people achieving some amazing things and I think people who aren’t disabled were inspired by what we could do.

But I know a lot of disabled people felt it did not represent them and I totally understand that. It’s why I make it my mission to talk about my life outside sport, about the barriers that still exist in society, whenever possible.

Road to Rio

I’m really looking forward to Rio and I hope people get behind us. It will be a shame if they don’t manage to sell tickets and the stadiums are empty. But as an athlete, you just have to get on with it and focus on your event.

It would be great to see more coverage of disability sports. At the moment there’s the Paralympics every four years and then nothing in between. I think it would help disabled athletes get more sponsorship and make disabled people more visible. If people can’t see disabled people, they just don’t exist.

Relaxing with maths

I work as an analyst at the investment bank Goldman Sachs in the technology department. This might sounds funny, but I see my job as like a holiday from the highly pressurised atmosphere of Paralympic sport.

I’ve always had a logical brain and I love maths.

They’ve created the perfect role for me, which fits around my impairment and my sport commitments. I know it’ll be hard for me to progress in my career while I’m doing dressage, which is frustrating. But everyone I work with is so understanding. It would help support a lot more disabled people into work if more employers were as creative and flexible with roles as mine.

When training in a Paralympic year, it’s about knowing how to balance training with fatigue. It’s difficult because I’m a workaholic, I’m always working. That’s my biggest challenge, knowing when to stop.

Pushing myself outside my comfort zone is how I’ve always lived my life. I never thought I’d have a job in London. I enjoy the independence it gives me and it enables me to pursue dressage.

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We’ve published the findings of a new poll which asked disabled people whether the Paralympics can change attitudes to disability and asked what life is like if you’re disabled in 2016. Read more about our Parlympics survey

Visit the ParalympicsGB website for more information.