“Without Ian I don’t know what we would have done” – #100days100stories

When Kelly was told that her two-year-old son, Lincoln, had cerebral palsy, she turned straight to the Scope helpline to find out more. That’s how she met Scope Response worker Ian, who was on hand to answer her questions. Kelly has shared her story as part of Scope’s 100 days, 100 stories project

Kelly holding up her toddler Lincoln
Kelly and Lincoln hugging

My husband Adam and I were told that our two-year-old son Lincoln had cerebral palsy in July 2014. Things suddenly made sense as we’d been worried about Lincoln for some time.

Knowing something wasn’t right

Since he was about one I’d been telling health professionals that he wasn’t sitting up or crawling like I thought he should be. I’d worked with children, mainly those about two-years-old, in a nursery for 10 years before I had Lincoln, so I knew what other children his age were like.

It was about this time that I contacted my doctor about it. She told me that it wasn’t anything to worry about and that he might just be a bit of a lazy boy! Apparently lots of boys that age can be a bit slower to develop.

My doctor told me to give him a month or so and then go back if I was still concerned. After the month there were lots more doctors’ appointments and health visitors. People just kept telling me that he was a lazy boy and that I should stop worrying.

Waiting for a diagnosisKelly playing with Lincoln on the floor

It wasn’t until he was two that a pediatrician actually told us that Lincoln had cerebral palsy. It wasn’t as much of a shock as it could have been to be honest.

I’ve got a friend whose son, who must be in his thirties now, has got cerebral palsy too.

I had been talking to my friend on Facetime one night telling her about Lincoln and she said it sounded a lot like what she had experienced when her son was growing up.

When the doctor gave us the diagnosis he said that we didn’t actually seem that shocked! We’d already had some time to think about it and let it sink in, so I suppose we weren’t too surprised in the end.

Information overload

Although we weren’t surprised, we didn’t actually know that much about cerebral palsy back then. Once we got the diagnosis we turned to the internet to answer some of our questions.

As a lot of people probably find, there’s just so much out there and a lot of it is rubbish and confusing. Thankfully our GP suggested we get in touch with Scope, as they could provide us with some information.

Ian gave us hope

I sent an email and Ian from Scope’s Response team got in touch with us. The first time he came and visited made such a difference. He was just brilliant. We just bombarded him with questions!

Ian was great at not overloading us with information, but he told us what we could read and what websites to visit in our own time. He actually told us that he didn’t want to just hand us a load of information, because we couldn’t take it all in at once.

Seeing Ian, who has quite severe cerebral palsy himself, really gave us hope. He drives a car, he gets out and about a lot, he works, and I thought that if he can do it, then Lincoln will be able to do it too.

Ian really was our biggest help. Without him I honestly don’t know what we would have done. Ian knows exactly where we’re coming from because he’s had to deal with it all himself. I think that helps, when you know somebody’s been through it themselves.

Accepting Lincoln’s impairment

Me and my husband have now come to terms with the fact that, yes Lincoln’s got cerebral palsy and yes it’s going to affect him for the rest of his life.

But it doesn’t make him a different child to the one he was before we got the diagnosis. He’s just Lincoln, at the end of the day. That’s just the way he is, that’s just him, that’s part of who he is.

See Ian at work behind the scenes of Scope Response.

If you need support or information, call the Scope helpline on 0808 800 3333.

Get involved in our 100 days, 100 stories campaign and read our stories so far

Scope’s work and the Zero Project awards

This week, Scope’s projects are being celebrated in Vienna as examples of international best practice.

The Zero Project awards are held every year and focus on the rights of disabled people around the world.  Each year, the Project identifies the most innovative and effective policies and practices that improve the lives of disabled people around themes of the UN Convention on the Rights of People with Disabilities. This year’s themes are independent living and democratic participation. Over 400 delegates from more than 50 countries are attending the awards.

Three of Scope’s projects have been shortlisted for international best practice – Connect to Control, Activities Unlimited and the Access to Elected Office Fund, which we worked with the Government Equalities Office to create.

Connect to Control

“It enables me to communicate and be more independent, which gives me freedom.”

In 2011, Scope launched Connect to Control.  This was aimed at addressing how technological innovations can increase independent living for disabled people. Its key aim was to make equipment cheaper and more accessible for disabled people to allow them more control over their environment.

We commissioned a piece of research with the Helen Hamlyn Centre for Design at the Royal College of Art called Enabling Technologies to better understand the digital divide between mainstream and assistive technologies and to outline the potential for future inclusive technologies.

The prototype control system was tested by students at Scope’s Beaumont College in Lancaster and 23 students received bespoke systems allowing them to control their environment from their computer for the first time.

The accessible home automation system, based on the Connect to Control prototype, is now available to purchase from Therapy Box.

Learn more about how technology has changed how disabled people live independently.

Activities Unlimited

Activities Unlimited is about making short breaks and activities better for disabled children and young people.  We train and support activity providers.  We help to make sure activities are affordable and that your child can take part with siblings and friends.

Whether it’s sports, arts, dance, drama or a couple of nights away from home, we’ll give you information on what’s available to make sure disabled children can join in and develop their confidence and independence.

In Suffolk, where Activities Unlimited operates, it has transformed the activities available to disabled children and young people.  In 2009 there were 35 short break providers in the county.  There are now around 200 providers of mainstream and specialist leisure activities who offer quality activities to disabled children and young people.  There are 2,700 children and young people registered via the Activities Unlimited website.

Access to Elected Office Fund

As a result of Scope campaigning, the Access to Elected Office Fund became law in 2012.  Disabled people are significantly underrepresented in public life, and the Fund is designed address some of the extra costs they face in standing or applying to become MPs, councillors or other elected officials.

The Fund works by offering individual grants of between £250 and £10,000 to disabled people who want to be selected as candidates for an election, or who are standing for election.

The 2015 Election will be the first General Election where candidates have been supported by the fund.  If you are a disabled person thinking about standing for election, do find out more about the fund and how to apply.

“Just because Barry’s got a set of wheels doesn’t mean his ears don’t work!” – #100days100stories

55-year-old Barry got a new lease on life when, with Scope’s support, he moved into his own home. Scope’s Stories Officer Nick Duquemin met Barry and his Support Worker, Judy, at Barry’s home in Hereford.

Here, as part of Scope’s 100 days, 100 stories campaign, Judy and Barry discuss life, changing attitudes and Barry’s beloved Hereford United FC. Barry has cerebral palsy and has complex mobility, learning and communication difficulties. 

Barry and Support Worker Judy smiling in his home
Barry and Support Worker Judy smiling in his home

 

Judy: Barry will have lived here 15 years this year. I’ve worked for Scope for 16 years – it’ll be 17 years this year. I was a support worker when Barry moved to Hereford. I wasn’t on Barry’s team, but I have known you since you moved to Hereford.

Barry: In 1999.

Judy: Barry has his own tenancy now. It’s a housing association property, so even if we stopped supporting him – even if Scope stopped existing – Barry would still have a home. He would just need to find another care provider.

He’s got security because he’s got a roof over his head, which he wouldn’t have if he were in registered care.

Barry: It [Grangewood] was a big place. Too big. This is smaller. Day-to-day activities.

Barry: Going to the Courtyard.

Judy: You like to go to the Courtyard [a theatre / café nearby], which is really handy for where you live. What do you do on a Saturday, when they’re playing at home?

Barry: Football.

Judy: Hereford United football ground is literally just across the road. Barry likes to go and watch the football, even though they’re not doing very well.

Barry: Yes.

Judy: You’ve got a t-shirt and a scarf – you’re a proper Hereford United supporter. You go to every home game.

Barry: [Unless] I’m on holiday.

Judy: Yes, you missed one because you were on holiday.

Barry: [My holiday was to] Southampton.

Judy: You use Revitalise holiday company. They provide supported holidays, so Barry doesn’t have to take staff with him; he gets supported there. So it’s a true holiday then – he gets to have a break from us and his housemates.

It’s really a holiday if you’re away from everybody. What else do you like to do? You love music. You go to a music workshop. Where did you go this morning?

Barry: Yam Jams [a music/rapping group for disabled people].

Judy: Barry goes to two music groups every week. You go to Yam Jams on a Tuesday and a music workshop on a Wednesday. You do get involved in lots of different things – you do different things with Echo [an organisation which runs activities for disabled people].

You’ve been swimming recently with the learning disability team – the learning disability team [at Hereford Council] have a physio and on a Thursday they organise activities to help with posture. You do trampolining as well with them, don’t you? Rebound therapy, they call it.

Barry: Yes.

Judy: It’s whatever takes your fancy really, isn’t it? Barry’s not really one for set routines, so it is whatever just takes your fancy at the time. You go and see shows at the Courtyard if there’s something on you like. Sometimes it’s just going out for coffee. There’s a lot of flexibility.

Barry

Flexibility

Judy: If there’s something you want to see at the Courtyard, you just ring me up or get the staff to ring me up and say, “I want to go and see this on this day”. When I’m writing the rota I can move the one-to-one staffing around to accommodate that.

So it’s Barry who’s in charge – Barry says when he wants the time, which is something he wouldn’t have had when it was residential care.

Changing attitudes

Judy: I think people are more aware and more accepting – they see you every day, don’t they Baz? And I think that’s definitely got to help the general public’s awareness. Seeing individuals rather than seeing people en masse on their weekly trip into town – a convoy of wheelchairs going down the street.

Whereas Barry can go into town whenever he wants to. It’s just him and his support worker and there’s no fuss.

I think it’s a lack of understanding. Sometimes people just don’t know how to cope – they see somebody in a wheelchair and they don’t know how to talk to that person.

I’ve said this often – just because Barry’s got a set of wheels doesn’t mean his ears don’t work, but people suddenly talk louder and slower. That’s better when people get to know you, but you still see it sometimes.

It’s frustrating if I’m out with Barry and someone talks to me rather than asking Barry. “What does he want to drink?” I don’t know, ask him!

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

I feel like I’m going in the right direction – #100days100stories

Guest post by Felix from London, who recently finished Scope’s First Impressions, First Experiences training course for young disabled jobseekers. Felix has shared his story as part of our 100 Days, 100 Stories campaign.

Felix blog
Felix is optimistic about his future career

I still feel there’s a long way to go in terms of improving attitudes around disabilities. That’s very clear in terms of employment, social life and so on.

When people think of disabled people they usually think of somebody who’s using a wheelchair. If they took their blinders off, they would realise that there’s so much more to it than that.

The first thing we need is for employers to be educated about disability. But the other thing is for disabled candidates to strike up the confidence to tell the employer: “This is my condition, this is the support I need”. I feel like I can do that now.

First Impressions, First Experiences

Before I joined First Impressions, I was working for a firm in East London. It didn’t go well, and I realised that while my Asperger’s syndrome isn’t something I should be ashamed of, it’s not something I can just ignore. I needed some support.

Doing things like CVs and interviewing techniques has been very useful. I’ve learnt things I hadn’t even heard about, like how to disclose that you’re disabled in a positive way. First Impressions also set up a work placement for me in an office, and from my first day there I knew it was going to be a good experience.

I wasn’t just left in one place – I was in marketing, HR, IT and the general office, so I got the chance to experience different areas and juggle different things.

I definitely feel I could do that kind of job now – I can pick up the phone and talk appropriately, I can sort through mail, I can do admin and so on. But my ideal career option would be a job which enables young people to realise their potential.

Felix sitting at a boardroom table talking to an employment advisor
Felix talking with a Scope employment advisor

What I’ve learned over the past six months

You can’t compare yourself to everybody else. Can you imagine how bland and boring the world would be if everybody was the same? Everybody brings something new to the table.

You may feel that the world doesn’t understand you, but it doesn’t mean that you have to let your life go downhill. But you do need guidance, and this is where mentoring and ongoing support becomes handy as well.

Having role models is good too – you see someone like Nick Hamilton, the racing driver who has cerebral palsy, and you realise that what you want to do is possible, you just need to go about it the right way.

I feel that what I’ve learnt from First Impressions I can build on in the future.

I’m working towards being in employment. I’ll have to be tough, because I’m not quite where I want to be yet, but I feel like I’m going in the right direction.

Find out more about 100 Days, 100 Stories and read the rest of the stories so far.

Disability innovations: If I can fly a plane, what else can I do?

Plane in the air while flying - text says "Anyone can fly"

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We hope it will inspire more innovation in the disability field.

What is Aerobility?

Aerobility is a charity that offers disabled people of all ages, without exception, the chance to fly an aeroplane. They offer once in a lifetime trial flying sessions for people who are disabled or terminally ill. These sessions are just £60 – making it much cheaper than an average Red Letter Day flight experience for a non-disabled person! As well as trial flights, they also offer flight training to obtain a private pilot’s licence, simulator sessions, aircraft hire and are the representative body in the UK for disabled aviation.

Who can fly?

Their general rule is that as long as you can move something then you can fly, regardless of your impairment. With over 20 years’ experience and run largely by disabled aviators themselves, they claim they teach anyone who wants to learn to fly. They have developed and adapted special planes equipped with hoists and other assistive technology solutions, to cater to any disability or impairment, from mobility issues to sensory problems. They are based at several airfields across the UK including Blackbushe, Tatenhill in the Midlands and Prestwick in Scotland, but also fly from other bases on temporary detachment.

Aerobility believe that flying can have a huge impact on people’s confidence and self-esteem, can be a really inspirational experience, and can even change their view of disability forever: “If I can fly a plane, what else can I do?”

Why we like it

We love how Aerobility is truly inclusive and makes the once in a lifetime experience of flying a plane both physically and financially accessible to everyone. Their positivity and can do approach is inspiring and their focus on ability makes a welcome change from hearing about what disabled people can’t do!

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

To tell us about a Disability Innovation, please email innovation@scope.org.uk

My dream is to be accepted at school – #100days100stories

Chloe

Guest post from Chloe, a secondary school student who has mild cerebral palsy which affects the left side of her body. She has shared her story as part of our 100 days, 100 stories campaign

When you are at school it can be hard to know what to say to people. People react to my medical list – which includes mild cerebral palsy – very differently, but this is what I want them all to know.

chloe
Chloe’s splint that helps her walk

The worst thing about having a disability is that people see it before they see you – before they get the chance to know you. I haven’t even opened my mouth yet and I know they have preconceived ideas about me. But that’s okay. I guess if you have something different from others then it is bound to happen. I mean, the stares, they are normal. It’s not every day you see a splint. That’s part of human nature, I can live with that.

It’s the glares of disbelief  that are upsetting. What you see is a tiny part of me. A tiny part of what makes me and my personality but also a tiny part of my medical list. Pain. Pain is invisible to the outside world, but perfectly visible to me on a daily basis.  I’m a part-time wheelchair user. A reluctant part-time wheelchair user at that. I may joke and say “Oh, it’s because I’m lazy” but that’s probably because it’s easier. It’s easier than saying you are in chronic pain, no one wants to hear that, people just want to know things are getting better.

Can I just say, I hate using my chair. It’s the last resort. For me it traps me and can leave me out of control, shows I have given up and can’t go on. If I am in my chair it doesn’t mean that I can no longer walk. It means the pain has become too much to manage – like someone screaming in your ears. Yet I’m still expected to concentrate in lessons and work. It means that fatigue is swallowing me up and not letting go.

Throughout high school my dream was to be accepted because I didn’t see the point in changing for anyone. I believe I am very close to it and for that I am eternally grateful. However another one of my dreams has been to dance in the school show – something I am yet to fulfill. You see, I used to dance, before the diagnosis list got out of hand. In my earlier years I was shy and reserved, something that doesn’t really fit my personality anymore. But now the barriers include my pain, fatigue and reduced mobility. I guess it’s something else I need to come to terms with.

I am constantly reminded about how positive and smiley I am. I’d agree, I am. Although a smile can hide anything you want. It can also make things easier to deal with. Being happy is a lot more fun in my opinion, it also makes others believe that things are all good.  I believe 100 percent that things could be worse. For me everything is normal. Normal is whatever you are used to. I also know it’s possible to live in pain and not just survive. It is possible to create the most amazing memories and achieve the highest possible.

Read more posts from Chloe on her blog.

Find out more about our campaign and read our 100 stories so far.

Girlguiding made me feel valued – #100days100stories

It is Girlguiding’s World Thinking Day today, and we’re sharing this guest post from Caroline as part of our 100 Days, 100 Stories campaign.

Caroline, a 22-year-old medical student who uses an electric wheelchair, has been a member of Girlguiding since she was seven. She now leads a group of Rainbows (ages five to seven) and Brownies (ages seven to 10).

Caroline in a wheelchair with helmet and paddle
Caroline preparing to go white water rafting

As a child I was very active. I did a lot of swimming and got a job as a lifeguard, and I studied hard to go to medical school.

When I was 16, I suffered a prolapsed disc in my back. During the routine epidural procedure that followed, I suffered a massive asthma attack and ended up in intensive care.

I recovered fairly well, but before long it became clear that this was not going to be a one-off event. My lungs reacted dramatically to almost anything. I suffered almost daily asthma attacks and had to learn a different way of living.

It meant giving up a lot of the things I enjoyed and I found that difficult.

Girlguiding made me feel valued

Being part of Girlguiding really helped. It was a constant. It was a link to the old Caroline and an opportunity to show myself that I could still do things.

My illness put so much stress on my family that I constantly felt I was a burden. In guiding my contribution, however big or small, was valued. That gave me the confidence to try and accept my situation and make the best of what I had.

When I started university in 2010 my asthma had stabilised, but new problems began to appear. The steroids I was taking to keep the attacks at bay were having side effects all over my body, from weight gain and bruising easily to steroid-induced myopathy (muscle weakness).

Over time my muscles became weaker and wasted away, until during one hospital stay I got out of bed to pick something up and realised that I could not stand up. My legs were not strong enough.

This was terrifying. Initially, I thought I could not cope. I could not imagine my life like this – struggling to walk any distance, finding stairs like climbing a mountain.

The day things changed for meCaroline in a wheelchair chopping a tree trunk

The only reason I didn’t give up was that the day after I was discharged from hospital, I was due to take 36 Brownies to a theme park.

I was incredibly nervous about being pushed in a manual wheelchair and had no idea how the girls would react.  As they were arriving, one of the youngest girls came up to me and said: “I know I’m not supposed to say this but I like you being in a wheelchair”.

I asked her why. “Because now it doesn’t hurt my neck when I’m talking to you!” was the answer.

That was a turning point in my mind. In so many areas of my life, people were saying “No” to me. In guiding the answer was “Yes”. It gave me a safe environment to test out my new limits.

I had support, but I wasn’t smothered. I was allowed to make my own mistakes, but I knew that there would be someone there to help me work out what to do differently next time.

Since then the opportunities have kept coming, and being disabled has never been an issue.

Caroline sitting cross-legged at the front of a group of five young women
Caroline at the World Scout Moot in Canada (front middle)

Last year, I took my Brownies away on holiday, using my electric wheelchair. I also attended the World Scout Moot in Canada where I tried white water rafting, sat on a glacier and was carried through a cave to see a waterfall.

Guiding has got me through when my disability seemed like an insurmountable challenge and I’ve made friendships and memories that will last forever.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

25 days of stories – #100days100stories

In the last 25 days we’ve shared disabled people and families’ stories about dating, fostering, finding work and how technology can make such a difference to people’s lives.

We’ve also heard about the extra costs that can quickly add up when you’re disabled, about fighting to get the right support to live independently and people’s attitudes towards hidden disabilities.

We’re publishing one of these stories every day in the 100 days leading up to the general election. And we’re asking parliamentary hopefuls to read just one story, so they better understand disability.

Having an impact

Alex holding her baby close
Alex with her one-year-old Benjamin

Alex’s story about being offered a termination of her unborn son has been one of our most read-blogs ever and has so far been shared more than 2,000 times on Facebook and Twitter.

Alex writes “No one said: ‘There’s a chance he might be happy. There’s a chance he might enrich your lives in ways you never imagined.'”

Craig’s story about turning his life around after a spell in prison to become a Paralympic cycling hopeful was selected as Guardian Society’s ‘pick of the blogs’ a few weeks ago.

“I’m not proud of my past”, says Craig, “but (prison has) certainly shaped me to be the person I am”.

Family ties

Our parent storytellers are fighters. Emily and Virginia are disabled mothers who also have disabled children. They have told us about the hundreds of pounds their families need to spend every week on extra costs.

And Sarah explained how she had to sleep separately to her husband for five years because her disabled daughter wouldn’t sleep alone.

Alice, the mother of two boys with autism, says writing about her experiences in a guide for other parents has given her strength. And disabled mum Marie has explained that being a small mum in a wheelchair has benefits most people wouldn’t think of.

Alice holding her son
Alice and one of her sons

The fight for independence

Disabled filmmaker Tom has told us what it’s been like to go from living at home to being at a transition service in the heart of the city he loves.

We’ve also shared Mandy’s incredible story about her 30-year battle to be heard. Staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, Mandy could start taking control of her life.

Barriers to finding work

Azar looking away from the camera
Azar struggled to find work after college

Our stories have highlighted the barriers disabled people can come up against when job-seeking. 20-year-old Azar struggled to get work after finishing college, but everything has now changed for him.

And Georgina writes about gaining the confidence to start volunteering and applying for jobs after 15 years out of the workforce.

Awkward moments

On Valentine’s Day Jennie Williams, the director of Enhance the UK told us how sex can be awkward when you’re hard of hearing. 22-year-old travel writer Emily revealed how her boyfriend googled ‘how to kiss a wheelchair user’ before asking her out.

“My personal favourite has to be ‘say you want to tell her a secret, then go for it’ with a winky face for added bonus points,” says Emily. “Luckily, he didn’t follow that advice.”

Jennie with her partner Jonno and a dog
Jennie and her partner Jonno

Get involved!

We still have 75 disabled peoples and families’ stories to share until the election on 7 May 2015. We are updating our 100 days, 100 stories page every day with our newest story, as well as sharing them on Twitter and Facebook.

You can also help us raise awareness by sharing a story on Facebook and re-tweeting with our hashtag #100days100stories.

If you would like to share your story as part of our campaign please email stories@scope.org.uk 

Top films that portray disability

It’s the Oscars this Sunday and The Theory of Everything is the favourite to win big. The film, where Eddie Redmayne portrays Stephen Hawking, has caused quite a stir. Some have praised it for the attention it has brought to motor neurone disease, whilst others have criticised the casting of a non-disabled actor as a disabled character.

We asked our Facebook fans about their favourite films that portray disability. Here are the top suggestions:

My Left Foot

“One of the first films that focused entirely on a disabled character is most probably ‘My Left Foot’directed by Jim Sheridan and starring Daniel Day-Lewis.  I was merely a child slowly discovering the world and found so many aspects of the film that I did not fully understand but I did get from it that disability has its struggles and challenges but with it also comes strength and determination. The film tackled various issues that 26 years ago were considered a taboo such as suicide, love, anti-disabled attitudes and rejection of the disabled.”   – Raya Al-Jadir 

“My Left Foot was the earliest film I remember portraying disability. I remember being amazed at how determined the character was. ” – Libby

Inside I’m dancing

“Since seeing this film in school I fell in love and would recommend it to anyone, Inside I’m Dancing is one of the best films I’ve ever watched for showing both the highs and lows of living with a disability, it was so realistic and well written that when I found out neither of the actors were actually disabled, I was in complete shock!
Inside I’m Dancing takes both the good and bad points of being disabled and adds humour which makes for such a feel good film. Having cerebral palsy myself I believe that people with disabilities should be given the chance to show their amazing talents in the media instead of able bodied actors playing the part of disabled characters.”  – Michelle

The Imitation Game

“Although it’s never stated, I feel the makers of The Imitation Game wanted to portray Alan Turing as someone with an autism spectrum condition. The thing that makes the film extraordinary for me is that they got this so right, while not letting it dominate the story.

Autistic characters are so often portrayed as rude, oblivious and not having emotions. Autistic traits tend to be foregrounded in quirky diversions and gags, while the person’s achievements fade into the background. “Not fitting in” is emphasised to the point that you might think if you’re autistic, you’ll never have any friends. This is depressing, but it’s also untrue.

In The Imitation Game, Turing’s autistic traits are just part of who he is, and crucially, part of what his friends like about him. The highly emotional scenes where young Turing – brilliantly played by Alex Lawther – falls in love with a school friend, are enormously moving. Turing’s special interest in codes is beautifully laced through these heart-wrenching flashbacks, where it becomes a source of meaningful connection, not a freakish curiosity.

The things we struggle with are portrayed too. Being overwhelmed by noise or strong emotions, the lifelong project of understanding what others are feeling and the mysterious world of social rules. At least, this is what I identified with in Turing’s story – each autistic person’s experience will be different.

Despite the tragedy of the story, I left the cinema feeling optimistic. As Temple Grandin says, we need all types of minds.” – Suraya

Four Weddings and a Funeral

“I’ve always liked the character of David, played by deaf actor David Bower, in Four Weddings and a Funeral. Bower plays Hugh Grant’s brother, but the film doesn’t make a big deal of his deafness: the character is neither tragic nor endowed with special gifts. He’s an ordinary person who has a nice, jokey relationship with his brother – and they just happen to communicate in sign language. I love David’s dramatic intervention in the wedding ceremony, where Hugh Grant’s character translates David’s signed words for the congregation, transforming a well-worn cinematic trope into a funny and memorable scene.” – Kim Thomas

Disabled models in the fashion industry – #100days100stories

This is a guest post from disabled model Hayley-Eszti.  She is sharing her story as part of our 100 days, 100 stories campaign

When I was struck down with a severe case of ME in my late teens, I never thought I’d be where I am today. To go from being paralysed, unable to move or talk, reliant on carers, to where I am now – able to campaign for awareness of ME and disability in general, as well as becoming a disabled model, it’s all quite overwhelming.Young woman sitting in a wheelchair on a beach

I remember when I first realised my illness was so severe that I needed to use a wheelchair and mobility aids, it was scary and it was hard to accept. You never expect it to happen to you, especially because I had always been so active growing up, but that’s the thing about the disabled population, it’s the world’s largest minority of which anyone can become part of at any time. The more I began to accept my situation the more I wanted to make a positive out of a negative.

I started to see how under represented we are as a community, particularly within the fashion industry and media. I’ve always had a big interest in fashion, and it angered and upset me that disabled people were rarely, often never considered within advertising and marketing. Online shops, catwalks, even editorials and faYoung disabled woman modelling a white dress, sitting in a wheelchair in a gardenshion photographers were missing out on this huge market. There are over 11 million people with a limiting long term illness, impairment or disability within the UK. All of them need to wear clothes, so the question I always found myself asking was, why was nobody considering such a large group of people?

We need people to look up to, people we can relate to, and we need to see REAL disabled people, no gimmicks or able bodied models posing with some crutches for a couple of hours.

I began campaigning for more disabled models to be used within the fashion industry, and I started creating my own photo shoots which I put on my blog. The response was amazing and I soon started to receive more and more comments from people saying I should look into modelling myself. I’d been campaigning for it, so I thought why not put myself out there and try and become one of the peoYoung woman standing on a beach next to a wheelchairple I so desperately wanted to see being represented and treated equally? We don’t want to be treated differently and we are not asking for special treatment, just to be respected and treated as equals. I’m doing this to show that we are not invisible and we do matter. I want to show that we can still have dreams and fulfill them even if we do have limitations.

Something worth pointing out is that disabled models do have a place and they do resonate with people. A perfect example of this is Scope’s recent Retail stock appeal featuring Jack Eyers, a disabled model. It was their most successful retail appeal, generating 1.2 million donations, whilst also raising the issue of the lack of disabled people in the media and fashion industry. You can’t argue with figures like that.

My hope for the future is for disabled models to be the norm, for new generations to grow up regularly seeing disabled models. It’s time to make a change.

Read more stories and find out how you can get involved in 100 days, 100 stories. 

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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