All posts by Nick Duquemin

I wasn’t told I had cerebral palsy till I was 60 – Paula’s story

Guest blog from Paula, who contacted our helpline earlier this year after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support. Here she shares her experience.

In January 2015, soon after my mother died, my sister called me and told me there was something she needed to tell me – that I have mild cerebral palsy, and that my mother had never told me. I am 60 years old, and I had known nothing about it until then.

I went to my GP and asked him to read me the medical notes from my birth. Sure enough, there it was.

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. Attitudes were very different then.

Paula, touching a tree in a garden
Paula today, photographed by her husband of 40 years, Graham

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.

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.

Paula, with her baby son
Paula with her son

Life today

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. 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.

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.

Paula, as a young woman, smiling for the camera
Paula as a young woman

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. I just wish I had known sooner about my condition, and I very much hope this wouldn’t happen today.

Attitudes to disability have changed since Paula was young, but did you know that until 1995, it was still legal to discriminate against disabled people? Read more about our work to mark 20 years since the Disability Discrimination Act.

“I get one bath a week, and I often sleep in my clothes” – Rebecca’s story

Guest post by Rebecca, who has ME and is a wheelchair user. She has lost her entitlement to social care, and now gets no support at all. Here she explains how it has affected her life.

Long hours stretch out in front of me. There’s nothing to fill my time. I cannot get out of the house. I may go many days without seeing anyone.

It’s a struggle even to have a drink; I certainly can’t get to the loo on time. I can only eat things which come straight from a packet.

If I ask for help to do something that isn’t directly about caring for my physical needs, I’m told it’s not possible. No one asks if I’m happy, or if I’d like a social life.

This is the situation I have faced ever since my care package was taken from me.

Losing my social care

I used to receive an hour of care a day where I’d get help with a hot meal, basic housework and a bath.

But when I was reassessed, this care was removed completely. One of the reasons I was given for this was that I was ‘able to use a computer’.

I was told: ‘If we gave help to everyone who just needed a bit of help with their housework, we’d have to give it to everyone.’

But it’s a lot more than just housework. Without social care, I lose the ability to do the things which make me happy, and end up spending all my energy on survival.

Rebecca outside in her wheelchair, holding her dog

How it affects me

I have volunteer carers now who come in to help me when they aren’t working. I get maybe one bath a week, and hot meals four days out of seven.

I often have to sleep in my clothes. I don’t eat properly, which means my medications are disrupted as some must be taken with food.

I was prescribed hydrotherapy about 10 years ago but I have never yet been able to attend, as I have no carer to take me, push my wheelchair, help me undress and dress again.

I’m forced to wipe myself down with baby wipes rather than have a bath, because it’s not safe to bathe myself.

I choose to be happy

I didn’t choose this life, but I still choose to be happy. My cooking and loving and care-giving (which once defined me as a proud and happy wife and mother) have had to be set aside.

But my joys are of lying in my bed looking out at the riot of summer turning to autumn in the countryside I love.

My joys are my warm dog snuggled against me under the blanket, or the total trust and love of the parrot I adopted climbing on my arm, asking for his head to be scratched.

It is not an easy life-lesson to learn that no matter what happens, I can still choose to be happy. I just need more direct care, more stability, less financial uncertainty and a lot less stress.

We’re calling on the government to provide more social care funding for people like Rebecca. Find out more, or tweet us using the hashtag #carecrisis. 

“I can’t get out of bed, or get dressed, most days”

New research released by Scope today reveals the extent of the social care crisis for disabled people who need support to do the basic things in life. Here are three of their stories.

Robert, 63, from Warwickshire, has very restricted mobility following an accident 15 years ago. He isn’t able to get out of bed, get dressed or prepare food without support, and is in a lot of pain. He’s currently entitled to 14 hours support a week.

Robert, a disabled man in his 60s, in bed.

In an ideal world, my support worker would come for two hours a day, and he would shower me and change my bedding, vacuum my room and stuff. But if you have a week like I had last week, where I had three hospital appointments, all my social care is used up on getting me to hospital. There’s no time left for everyday care.

If I’m on my own, I don’t have anything to eat or drink all day. So life is miserable, to be honest.

I’m lucky that my wife lives with me, but she shouldn’t have to do everything for me, and without her there is no way I could live independently.

I rang up my local authority and told them I was under pressure – I couldn’t afford the water rates, and I was being taken to court. They sent me a letter telling me to get food from a food bank 17 miles away. I can’t get there, and I would rather starve myself to death than go to a food bank.

I can’t get to see my grandchildren. I’ve never visited my son’s house. I honestly can’t remember the last time I did something socially, out of the house – we’re talking years ago.

“I have to sleep in my wheelchair, and I am malnourished”

Rachel, 42, from Southampton, uses a power wheelchair and is in constant pain. Her mobility is very restricted, and some days she isn’t able to get out of bed.

Since 2010, I have had two thirds of my care package cut, from two and a half hours a day down to 45 minutes.

My social worker just said ‘We can’t do it any more, we have to make cutbacks’, and then my care was cut almost instantly. It just feels like they washed their hands of me.

On my worst days I can’t get undressed properly in the evenings, or transfer from my power wheelchair into bed, so I have to sleep in my chair, in my clothes. I had to fight to get a care call so I can shower once a day. My local authority suggested that three days a week would be enough.

It’s horrible. When my arms aren’t working properly, I can’t prepare meals, so I end up just having bread. Before, I would have had my meal prepared. The last time I was in hospital, they told me I was malnourished.

“I’m getting deeper into debt just paying for basic care”

Jo, 47, from Cambridgeshire, has spinal muscular atrophy. She arranges her own care, employing support workers using direct payments.

I’ve got very weak muscles all over, I use an electric wheelchair all day, and I need support doing most things really – washing, getting dressed, cutting up food, moving my arms about to help me do things.

I need to have carers come in three times a day, and I technically get enough funding for 28 hours care a week. But the rate we get hasn’t gone up for 15 years, and there is a shortfall in how much that 28 hours actually costs when all the extras come in – holiday pay, recruitment, pension contributions.Portrait of Jo, a disabled woman, sitting in her wheelchair

You end up cutting corners with the very basic things. I might end up not washing my hair, because it means I’d be keeping the carer here too long. It might take me three quarters of an hour to have a shower, but social services say ‘Well, actually you can do that in 15 minutes.’

We are actually in debt. I’ve had to take out personal loans. This has been going on a good five years. We never clear it, it increases slowly year by year, and it just feels like it will never end.

If I cut back on the amount of care I get, that would mean staying in bed in the morning, or not going to bed at night. It really is the very basics.

We’re calling on the Government to urgently address the social care funding crisis when future spending plans are announced by the Chancellor on 25 November.

Find out more on our website.

“I’ve been in these clothes for two days now. I haven’t had a shower. I feel awful.”

Guest post by Kirsty, who lives alone and needs support to get up, wash and dress, and leave the house. She uses a wheelchair. Her social care was cut by 50 hours a week, leaving her in huge difficulties. She has asked for her name to be changed to protect her identity.

I’ve been wearing these clothes for two days now. I haven’t had a shower. My hair isn’t tied back and I can’t do it myself. I feel awful. If I can’t find care tomorrow, that will be my third day in the same clothes.

For over 10 years, I was entitled to nearly 80 hours a week of care for getting up, showered and dressed, going about my daily life, and doing social activities. I also had an on-call service at night in case I needed the toilet.

Then I received a letter out of the blue telling me that I had five days to get some incontinence pads to wear at night, because my night care was being cut.

I am not incontinent and I have full sensation, so I’d be lying there from 10 o’clock at night until 8 o’clock in the morning.

I challenged the decision and won, but that triggered a review of my whole care package. As a result, my daytime care was cut to 23.5 hours a week – from 11 hours a day down to three and a half hours.

Under pressure

It has affected every single area of my life. Before, I was independent – not in the sense that I did everything for myself, but that I had choice and control over my life. Now I feel like the structure of my life has completely broken down.

I can’t leave the house on my own, so I am stuck inside most of the time. I can’t go to the bank, or to the shops without support. I live slap bang in the town centre, but if there’s no one here to help me I might as well be on the moon.

I get an hour and a half care in the morning, an hour for tea and an hour at night, and I’m always under pressure because I cannot complete the things I need to do in that time. I have been threatened with being left naked in the shower by agency staff because my time was up.

I now employ my own support worker, but her time is restricted – she has another job, and travelling to me three times a day wouldn’t be worth her while. We often have to combine my three calls into one, but then I’m left alone all the rest of the day.

If my support worker is away or off sick, I’m expected to cover care myself using agencies. There is often no one available, and then I’m left completely alone.

Stuck inside

At the moment I rely a lot on a close friend, but I shouldn’t have to put them in that position. I don’t ask them shower or dress me, but I’m still terrified that the pressure will put strain on our relationship.

The social things I used to do are impossible, unless a friend is prepared to help me – for example, they’d have to help me get into bed, still wearing my clothes.

I do worry about my mental health. Not being able to get out of the house, or go down the road to visit a friend, or even to the shop or to get some fresh air, is horrible.

I find it really shocking and distressing that even the basics aren’t in place for me – and there must be thousands in my position. I’m being made to feel like it’s wrong to expect to be showered and dressed every day. All I want is to be able to lead a normal life.

We’re asking the government to fund better social care for people like Kirsty. Read more on our Social Care webpage

The photo in this post is posed by a model.

I want to make young disabled people’s voices heard – Aaron’s story

Guest post from Aaron, 15, who has cerebral palsy and lives in Waltham Forest, London. Our stories team spoke to him and his mum Sonia, a befriender with our Face 2 Face service, over the summer, and we’ve worked together on this article.

My dream is to go into fitness. I’m dedicated to fitness; I want to get a ripped body! And I want to share my passion with other people so they can get fit themselves. I’d like to be a fitness instructor.

I go to a special school at the moment. I’m doing functional skills, but I would like to do English, maths, science until I get my GCSEs, so I’m thinking of staying until I’m 19 and then going to college.

Aaron in an outdoor yard space, smiling at camera

Volunteering

I work in a volunteer group called Bigga Fish, and we’re planning a big festival in the Olympic Park at the moment. I can’t really tell you a lot until we launch it.

I’m also on the Legacy Youth Panel, and what we do there is talk about what to do on the Olympic Park site.

They’re putting a slide on the Orbit sculpture at Olympic Park – that was to do with us.

We suggested it, because when we went up to the Orbit, there was nothing there. It was just boring, and it wouldn’t attract local people or tourists.

Getting young people’s voices heard

Close-up of three trophies presented to Aaron for community work
Some of Aaron’s awards 

I do community work because I’m interested in getting young people’s voices heard.

One thing I would like to do is meet with Stella Creasy, my local MP, and talk to her about services for disabled people in Waltham Forest.

Everywhere I turn, there are services closing because they don’t have enough funding from the council. I used to go to several of them after school and at the weekends, but now they have been closed down.

I think young people’s voices are not heard enough, because I think they would be asking why all these things are being closed.

What I’d say to my MP

I want to say to Stella: ‘Why are there no services? Why couldn’t you cut back on road surfacing or speed humps, or stuff we don’t need?’ I think the priorities are not right.

Aaron and his mum Sonia sitting at a table talking
Aaron and his mum Sonia, a Scope Face 2 Face befriender

If these services keep closing, there won’t be enough to go round. Even now people are having to go out of their local borough. Disabled people will just be isolated.

It’s the worst thing that could happen. Disabled families will now feel isolated; they’ll be thinking ‘Where do I go? I have no one to talk to.’ It is a sad thought.

A better future would be loads more services in Waltham Forest, so disabled children and families have somewhere to go for support.

In one way I want to be a politician, but at the moment I would rather be on the outside tackling the problems rather than be on the inside.

Do you have a story to share about disability? Email us at stories@scope.org.uk

Life cost me £10,000 extra last year… Because I’m disabled

Guest post by Catherine Scarlett, who spoke at a panel discussion we held in partnership with the Fabian Society at last week’s Labour Party conference.

The subject was the extra costs disabled people face, and the other panellists included Debbie Abrahams, the new shadow minister for disabled people. Catherine has a neurological condition and uses a powered wheelchair.

I first got involved with Scope’s work on extra costs nearly a year ago, when I filled in an online questionnaire about the extra things I have to pay for because I’m disabled.

I’d just shelled out an eye-watering £7,600 for a wheelchair with powered wheels – which came out of my savings, although some of the costs were later refunded by Access to Work.

I started adding up other expenses, and realised in total that year, my extra costs had been well over £10,000.

At the same time, I was about to lose my job. I had been determined to keep working after I became disabled, but my employers appeared equally determined to get rid of me.

I was reading stories in the papers about how disabled people got masses of hand-outs, and online comments accusing us of being shirkers and frauds.

So when I was asked to be on the panel about extra costs at the Labour Party Conference this week, I jumped at the chance. I feel it’s vital that real people tell their stories – they make far more impact on the public than statistics.

I managed to put back a month’s hospital admission for a day so I could get to Brighton for the event.

Talking about my extra costsCath-blog

On the day, I described some of the challenges that I have faced since I became disabled. From trying to find information about equipment, to getting support at home and at work, it can be a bewildering and frustrating process.

I outlined some examples of my extra costs. I’ve had to pay more than £3,000 for a folding wheelchair frame that fits into my car, plus £500 to replace broken parts.

Using a wheelchair damages your clothes, so I have to replace them often – two coats and 20 pairs of gloves last year alone. I’ve had to pay for a stair lift at home. I need a cleaner to do the jobs I can’t manage, at £30 a week, and my gas and electricity costs are far higher.

I’ve also needed to travel to London from Yorkshire eight times this year for hospital visits, costs I have to cover myself.

Even the hotel room I stayed at after the panel discussion was more expensive – I had to pay an extra £70 for a room which was accessible for me.

Extra costs payments

I have received Disability Living Allowance (DLA), and later Personal Independence Payments (PIP), since shortly after I became disabled, and they have been vital for my independence and quality of life.

Getting a wheelchair 18 months ago gave me my life back. Without DLA, and now PIP, I wouldn’t have been able to finance it.

I wouldn’t be able to travel to London for treatment, which would mean I lose my chance of improving my physical condition.

And I wouldn’t be able to pay the everyday extra expenses without financial hardship. Losing my job has been a major challenge to my financial resilience.

The social security system needs to be supportive and transparent, and it needs to ensure that disabled people get enough financial support to cover their actual extra costs. Currently there’s a big shortfall.

The event was brilliant for me, as it gave me the chance to share my story with a lot of influential people. I found that many members of the audience also had similar stories. I strongly believe that discussion with disabled people is vital in policy-making, and I’m hopeful that events like this will make a difference.

Read more about the day from our Public Affairs Team or find out more about the extra costs disabled people face on our website.

‘Are you blind, love?’ Why attitudes matter – #EndtheAwkward

Guest post from Elin Williams, a student from north Wales, who is visually impaired. In this post for our End the Awkward campaign, she talks about two different types of awkwardness she’s encountered.

Scope’s research shows that two-thirds of people feel awkward around disability, so when Emily Davison aka Fashioneyesta asked me to join in with Scope’s End the Awkward campaign, I couldn’t wait to get involved and share my own cringey moments…

‘Are you blind, love?’

A few years ago I was travelling alone on a train. I hadn’t long been travelling independently, and was still getting used to using my cane on a regular basis. Growing up, I always felt that the cane made me stand out and was reluctant to use it for fear of not looking ‘normal’.

Elin, a young woman, with her guide dog

So there I was. Along came the food and drinks trolley, and I plucked up the nerve to say ‘excuse me’ to flag the trolley down. I think this was the first time I’d ever done this – not being able to make eye contact or see people’s facial expressions has always made me  nervous of situations like this.

I asked the man pulling the trolley: ‘Do you have any drinks on this trolley?’

My inquiry was met with the scornful reply: ‘Ha! Are you blind, love?’

‘Well, yes,’ I said, lifting my folded cane from the seat next to me to show him.

The deathly silence that enveloped the passengers nearby let me know this encounter hadn’t gone unnoticed. I obviously couldn’t see how red he went, but considering the tremor in his voice, and how his hand shook when he dropped my change, I think he was a little embarrassed.

But he’d embarrassed me too. His smart-arse attitude made me feel so small and stupid.

A better experience

Only about a month ago, I and two other visually impaired friends had just got off a train and were standing outside the station, figuring out whether to get a taxi or to walk home. I had my guide dog Jazzy with me, while both my mates were using canes.University of Chester student Elin Williams aged 19 from Porthmadog with her guide dog Jazzy. Elin was born with a degenerative condition called Lebers Congenital Amaurosis and lost most of her vision when she was 15. A Welsh speaker, she is studying English Literature. Elin has written a first person story about her first year with Jazzy as a student.

A young guy came up to us and quite smugly said: ‘Did you have fun hiking today, guys?’

‘Those are some funky looking hiking sticks you have there,’ he elaborated, going on to ask us where exactly we’d been hiking, in Cambridgeshire, where there are no mountains…

It finally dawned on us that the guy had mistaken the canes for hiking sticks! We explained that we hadn’t been hiking, that we were blind and that they were our canes, whilst trying not to laugh along with his mates who’d witnessed his blunder.

Pointing to Jazzy, I added: ‘Yeah, she’s my hiking dog. I ride her up the mountains…!’

The poor guy was pretty embarrassed and very apologetic, but we reassured him that we weren’t offended.

It’s attitudes that make things awkward

From my experience, it’s much better to laugh at yourself and with others rather than get stressed out or touchy about silly mistakes.

Elin walking with her guide dog

What makes it awkward is when the perpetrator can’t laugh along with you, because they’re too mortified at having possibly offended you to see the funny side. It makes it much more awkward than if they’d just share the joke.

End the Awkward is a fantastic stepping-stone towards dispelling the taboo that surrounds disability, but I think it’s also important to remember that it starts with us as disabled people.

If you’re uncomfortable about your impairment and don’t know how to talk about it – and laugh about it – you can’t make others feel comfortable addressing it either.

A version of this story was first published on Elin’s blog, See My Way. Want to know more about ending the awkward? Watch our awkward short films, produced in partnership with Channel 4.

Photos courtesy of the Daily Post, north Wales.

I have dyspraxia, but people tell me I must be drunk – #EndTheAwkward

Guest post by Rosie, who has dyspraxia affecting her movement, balance and sensory processing. She’s supporting our End the Awkward campaign. Here she shares what a typical night out might be like for someone with dyspraxia.

It’s a Saturday evening and I’m off to meet some friends for some drinks. To get there I have to take a train and pass through a busy street.

It takes me a while to get on the train, as I struggle to judge the distance between the platform and the train. As I reach to grab hold of the rail, I can hear people behind me whispering. “Can she just hurry up, what’s she doing?”Portrait shot of Rosie, a young woman with dark hair

The train is packed and I can’t see any spare seats. I can feel myself losing my balance and I bump into people, accidently standing on their feet and hitting them with my bag. “Look where you’re going,” I hear muttered.

I sit down in one of the disabled accessible seats near the train door. The conductor approaches me: “But you don’t look like you’re disabled, why do you need a seat?” I feel so shocked that I spill coins everywhere as I get money out of my purse. “Pay when you get off,” he mutters, disgusted.

I glance at my phone. There are texts from my friends asking where I am. Oh no, I must be running late, and where is this bar again I can’t remember, I’m lost, I can feel my anxiety levels rising, my sensitivity to noise and crowds overwhelming me.

I eventually get to the bar, red faced, the contents of my bag all over the place, anxious and overwhelmed and exhausted. I get a drink, and am still so shaken I trip on a step and spill it down me. “She must be drunk already,” I hear people laugh.

But no, I’m not drunk – I have dyspraxia.

What is dyspraxia?

You can’t easily tell if someone has dyspraxia, and not that many people have heard of it.

It 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 sensitivity. Every person with dyspraxia is affected differently.

Rosie holding a medal, a stadium in the background
Rosie at the Olympic Stadium after finishing a 10k run

It can make it hard to carry out everyday activities, such as riding a bike, handwriting, tying shoelaces or using kitchen equipment. It’s difficult to walk up and down stairs, and I’m prone to falling over. We also can struggle with fatigue and low energy, as it takes our brains longer to process things.

Without proper understanding, people with dyspraxia can be seen as careless, clumsy, and rude – when in reality that’s far from the case.

Don’t judge by appearances

Ignorance, misunderstandings and awkwardness make already difficult situations a lot worse, and make someone with dyspraxia feel anxious and overwhelmed.

To end the awkwardness, people shouldn’t judge based on appearances. You never know if someone has an invisible condition, and you never know who might need that seat on the train. A little bit of patience and kindness can go a long way.

Portrait of Rosie with her boyfriend
Rosie with her boyfriend Matt, ‘who helps sort out the chaos’

And don’t make assumptions about what I can and can’t do. We aren’t stupid or careless; our brains are just wired in a different way, so the way we learn and process information is different.

Although day-to-day life with dyspraxia can be chaotic and frustrating, it also has meant I’m a very determined and resilient person. I am creative and able to see the bigger picture, and the experiences I’ve had have made me more understanding and empathetic of others.

With the right support and understanding, dyspraxia doesn’t have to be a barrier to success and living life to the full.

Rosie blogs on her site Thinking Out of the Box, writing about disability, diversity and creativity. Want to know more about how to End the Awkward? Watch our videos made in partnership with Channel 4.

As a short actor, I want to break down the height barrier – #EndtheAwkward

Guest post from Francesca Mills, who stars in our ‘What Not to Do… In a Job Interview’ film, co-produced with Channel 4. She has dwarfism, and previously appeared in ITV hidden camera prank show Off Their Rockers.

It’s amazing what people will believe. In Off Their Rockers, a sketch show where we pranked members of the public, I managed to convince customers at a launderette that the boss let me take home all the clothes that shrunk in the wash.

I even told them that if I saw something I liked going into the dryer, I’d cheekily turn the temperature up so it would shrink! The two women whose reactions eventually aired were totally on board with it.

My work on Off Their Rockers led me to get a part on Scope and Channel 4’s short film, ‘What Not to Do… In a Job Interview’. In it, I and another actor get into all sorts of trouble because of his awkwardness around my height.

Filming What Not to Do…

The other woman in the interview had no idea what was going on. She was a businesswoman who was used to doing mock interviews on video, and we’d told her she would be helping out a big company with their staff training.

By halfway through, she was starting to get very flustered! She kept smiling at me, but because she was there to do a job she kept quiet – which is fair enough, because it was all quite light.

Sam, the ‘interviewer’, was brilliant. I found it so hard to keep a straight face most of the day. Between takes we’d go into the other room and just break down laughing, it was so funny.

Awkwardness in my life

I’m quite young, so I haven’t experienced many situations like the job interview yet. Certainly no one has ever picked me up and put me on a chair!

Fran and a male actor talking, both sitting behind a table
Fran and Sam in our What Not To Do film

But you do get lots of situation where, like Sam’s character, people are scared of putting a foot wrong. They get really conscious of what they’re saying.

Sam represented that really well, because you could see the fear in his eyes. He really didn’t want to offend me, and that’s why he was getting so worked up. He was just trying to handle it the best way he could.

That’s why the film is so good – because it makes people realise, ‘Oh, actually I don’t have to freak out every time I’m talking to a disabled person.’ We have exactly the same sense of humour as everyone else, and we actually won’t be too fazed if someone’s being awkward.

Breaking down the height barrier

I just moved to London about two weeks ago. In November I start rehearsals for Peter Pan at the New Wimbledon Theatre; I’ll be playing Tinkerbell, which is very exciting.

In the future, I’d love to do a serious play, or a musical – anything, really! I’m enjoying the diversity of the jobs I’m doing at the moment.

But I do think all short actors want to try and break down the idea that short actors can’t be used for ‘tall’ acting jobs.

Warwick Davis, whom I’ve worked with, is a real inspiration – for example, he appeared in Spamalot in a role that could have gone to someone of any height, because he’s proved himself.

We’re all striving for the same thing: to get casting directors thinking about employing short people for roles where no reference is made to them being short. Where it’s just accepted.

Watch all six shorts now on Scope’s YouTube channel. Do you have a similar awkward story to share? Email stories@scope.org.uk

My life as performer with a learning difficulty

Guest post from Cian Binchy, a 25-year-old writer and performer from London who has autism. His one-man show, The Misfit Analysis, premiered at the Edinburgh Fringe festival last month.

If somebody asked me, ‘Can you describe autism?’ I would say that question doesn’t make sense. Everyone experiences autism in a different way, and at the end of the day, I can only really describe my own autism.

Cian, a young man wearing a Beatles T-shirt, on a London street
Cian in Dalston, London, last month

When you have Asperger’s syndrome, you are on the very, very able end of autism and in many ways you’re almost like everyone else. But there’s just something little in you that is stopping you, and singles you out from other people. It’s very frustrating.

People think if you’ve got ‘high functioning’ autism you can cope in any situation, and that’s not true at all. I’m always struggling.

I became a performer because I want to educate people about the struggles that people in my position go through.

I want to entertain people, but I also want to make them think. I want people to really experience some of my art and some of the stuff that goes through my mind – and for people to be a bit more understanding of the kind of issues that people with autism have.

My show at the Edinburgh Fringe

The Misfit Analysis is basically about the struggles that I’ve had with autism, particularly as a young adult between 16 and 20 – not having much luck with going to colleges or getting work; failing to have a relationship.

It’s not really a straightforward play; it’s more of a performance, if that makes sense. There is audience participation, there are some videos, but predominantly it is a one-man show.

It’s humorous. It’s dark. It’s a bit twisted. It’s unorthodox. It’s funny. It’s a bit sad. It’s a bit scary. It’s educational. It’s thought-provoking. And it’s all based on my own experiences.

You’re either going to be laughing your head off or be freaked out!

I hope it’ll help people learn that autism is quite unpredictable and complicated, and that you can never be an expert on autism. I would like them to do a bit of research on autism and maybe get more involved in it – and take autism out of the ghetto, bring it into the mainstream.

Because a performer with a learning difficulty, I am in a minority within a minority. There are many disabled performers, but hardly any that actually have a learning difficulty.

Disabled people in the arts

Unfortunately, the performance art world is a very tough place for anyone, especially people with learning difficulties.

Cian sitting on the floor next to a wheelchair, holding a toy windmill and a tragedy mask
Cian in a promotional shot for The Misfit Analysis

I was a consultant on The Curious Incident of the Dog in the Night Time at the National Theatre, basically teaching the lead actor, Luke Treadaway, how to behave like someone who is autistic.

He was really good, but the sad thing is that often people who actually have got autism don’t really get a chance to perform. They don’t get a chance to go to a decent drama school; they don’t get the right education for that kind of performance. I actually wasn’t even getting paid for doing this work.

Whereas when you see me perform, it’s real. In my show I am actually performing my own disability – so when you see me, and when you see the kind of stuff I do, like spinning a tin opener, it’s real. It’s not just an act.

Cian is working with Access All Areas, a theatre company which produces work by disabled artists. Read a review of his show in the Guardian here.