“I didn’t chop my own arm off!” – tales of a disabled chef #EndTheAwkward

Guest post from Ronnie Murray, who is group head chef at Mark Hix’s London restaurants and has a shortened left arm. He’s backing Scope’s End the Awkward campaign, and stars in our new awkward moments film.

I always knew I wanted to be a chef, but it wasn’t so rock ‘n’ roll 20 years ago. Back then chefs were rarely seen, and definitely not heard! It was seen as a bit of a drop-out’s career, but it was all I ever wanted to do.

As a teenager, I wrote a letter to Michael Caines, a very famous Michelin-starred chef. He had lost his arm in a car accident just a year before I was getting into the kitchen.

I went and worked with him for a week, and had a fantastic time. And I realised that if Michael can earn a Michelin star, then damn sure I could get off my backside and do it as well!

Disability and me

Man behind bar holding a knife
Ronnie Murray on the set of our awkward moments film

I’ve never referred to my arm as a disability, because it doesn’t really set me back with anything. I’ve only discovered two things I can’t do – ride a motorbike, and play golf! It certainly hasn’t ever held me back in the kitchen.

But being described as a ‘disabled chef’ doesn’t bother me. I want to inspire people through good cooking and great food, but if I can also inspire a disabled person who maybe thinks they can’t be a chef, that’s all the better.

How I approach awkwardness

I’ve never really noticed too much awkwardness in the kitchen. No one in my kitchen would look at me differently from anyone else, because they know me. First encounters can be awkward, but it always wears off quickly.

But I have had fun with a few awkward moments – like where someone will say, ‘Do you need a hand…?’ and then get embarrassed.

A barman here said to me last week, ‘They’re biting my arm off for these canapés…’ I said, ‘You can’t say that to me, that’s out of line!’ I’ll always reel it in back quickly though. I’d never leave anyone hanging.

A lot of it is about your own presence and attitude. Most people are much more comfortable once you’ve shown them there’s nothing to be embarrassed about – just be confident, and they’ll take their cue from you.

Ending the awkward

It’s a bit of a sad state of affairs that the issue of awkwardness around disability still needs to be raised. I think we’re much better than we were, but there’s still more to do.

I made a YouTube cooking demo for Vice last year. The golden rule of YouTube is ‘never read the comments’ – so of course the first thing I did was look at all the comments.

Most of them were positive and about the food, but there were also some cheap jokes about the arm. It doesn’t really bother me, but it’s very narrow-minded.

We’ve moved a long way as a community over the past few years, though, and I think that’s important. Programmes like The Last Leg are a fantastic thing, and the 2012 Paralympics almost got more interest than the rest of the Olympics.

To overcome awkwardness, all I think you need to do is treat each disabled person as an individual, and remember there’s nothing to be scared of. After all, the worst that can happen is an awkward moment.

Check out Ronnie’s awkward moments film and read more awkward storiesDo you have an awkward story to share? Submit your awkward stories, and we’ll publish our favourites on our blog and social media. 

Find out more about how Scope is ending the awkward this summer.

“I see more because I see less” – partially sighted photographer Ian Treherne

Ian Treherne is an Essex based photographer, who has Usher Syndrome type II. He was a 2012 nominee for the London Fringe Festival Photographer of the year award.

This is an extract of an interview in #PHOTOGRAPHY Magazine Issue 3, written by Daisy Ware-Jarrett and Genea Bailey.

Black and white portrait of the photographer Ian Treherne

Q: Most photographers rely on their vision and visual aesthetics in their work. We’ve read up on Usher Syndrome but for anyone who doesn’t know what it is, could you briefly explain what it is and how it affects you?

A: There are different types of Usher, I have Usher type II, which means I was born partially deaf, then later on in life I found out I had limited vision. My eyesight is basically what they call tunnel vision, I have a small window in front of me that I can see out of. I can’t see below, above and to the sides. It affects me on a daily basis, more so at night time as I rely on everything being lit up. Some days I don’t think about it, sometimes I do. Everyday is hard work, but somehow being stubborn and ambitious means that I seem to just get on with it really.

Q: In relation to your tunnel vision, we found a quote from one of your past interviews saying that your vision is similar to constantly looking through a view finder?

A: Yes that’s correct, though my eyesight is just a little bit smaller than the view finder. I guess I think I see more because I see less if that makes sense. I don’t know any different really.

Q: I (Daisy) found out when I was 10 that I was born with cataracts in both eyes and my eyesight would deteriorate over the years. I also discovered it could lead to operations and in the worst case I could slowly become blind. From this point on I became more creative in all aspects of life, and as I began to take photos, it had a profound effect on the way I made images. They became very visually pleasing and more creative. I almost overcompensate for my fear of losing sight through my images.

Do you feel having Usher type II has subconsciously had the same effect on your work?

Black and white portrait photo of a woman with short shiny fair hair, and a black t-shirt, looking seriousA: Sorry to hear that Daisy. I’m like you, that I have an imaginary clock on my shoulders ticking away. I’ve been told my eyesight may stay the same or it may deteriorate over time. It’s something I don’t think about, but unconsciously I have fire in my creative roots that’s making me do as much as possible while I still have the sight I have. I think myself ‘lucky’, as I’ve met people who have lost their eyesight and are younger than me and are also creative. I see their frustration and it makes me sad, so I guess I’m doing as much as possible.

I’ve only been able to talk about it within the last year, before then I kept it inside, struggled and pretended I was ‘normal’ like everyone else. Last year I did an interview with the BBC and it was my way of ‘coming out’, as many people I’ve known for years didn’t even know I had the condition. It was something I wasn’t able to talk about.

Q: That sounds like a really hard time. Since you’ve ‘come out’ do you feel like it’s helped your confidence?

A: It hasn’t changed my confidence as such, but it was a huge relief to be able to talk freely about it, as I’ve always seen it as being a weakness. I still find it difficult, but I’m able to talk about my condition without feeling bad, which I can assure you was a giant step for me! I couldn’t even be in a room with someone who had the same condition as I found it difficult to face. I’m not very good at being labelled disabled, it’s not a word I feel fits in with me.

Q: Your openness about your experience is really inspiring and by talking about your struggles you are helping other people.

So one obvious question, is why photography?

A: Well I know it’s helped me overcome some of my issues with talking about it, which is huge for me! I think the recipe of stubbornness, ambition, passion, drive for the creative world of photography and bad eyesight, only makes me more determined than ever to be known as a photographer. Knowing there’s nothing I can do about my eyesight, is to make the best of what you’ve got.

Black and white portrait photo of a topless woman with her back to the camera, looking over her shoulder directly into the cameraWhy photography – well I LOVE being creative, whether it’s doing art, playing guitar, or films, making it is what makes me tick. I was never going to be a scientist, I just don’t have that kind of mind, but with being creative I just come alive, I live and breathe it. When I was 15 I used to look at fashion magazines, I remember I was bowled over. Digital cameras weren’t invented at this time, so I carried on with my art work. While digital was making it’s way into the world, I decided I would have a go learning. I sat and learned the ins and outs of the camera. I combined my artistic skills with my camera and the new world of photography opened up. I think because it’s portable, instant and flexible it was the medium that fitted with me.

Q: One of the reasons we found out about your work was due to Photosense, a project we ran as part of #Phonar. It explores the relationship between photography and all five senses, and how they interact with each other. How important do you think the senses are in relation to photography?

A: For me it’s pretty important. For example, I photographed a building once that 99.9% people wouldn’t have noticed. I think with photography it enables me to step out the ‘box’ and look into it with my camera, I literally switch off from the mundane hustle of life and look and see everything as an artistic picture. Most people are so wrapped up with the rat race that they often don’t see the beauty around them. To me it’s obvious, others it takes time or they never really get to see it. I guess photography allows me to show what I am thinking and seeing, I like to share that with people.

Q: And is it this ‘stepping out of the box’ technique that allows you to incorporate all your senses?

A: I don’t analyse how or why I do it. It’s all about ‘the feeling’ which is instinct, you don’t question it, you just do it because you know it’s right. Music can affect your photography in some ways, I always have music on when doing a studio shoot. With my style of photography it’s about elegance, sensitivity, emotion and atmosphere.

Q: It’s really nice that you can see the beauty in such minimalistic things. With my photography (Daisy again) I try to avoid using black and white and enjoy the chaotic kitsch photography of practitioners such as David LaChapelle because I am compensating for having cataracts. So it’s great to see a completely opposite preference.

A: In photography there is no right or wrong, it’s all about preference isn’t it. It would be boring if we all liked the same things.

To see the full interview, head to #PHOTOGRAPHY Magazine

Does your impairment or condition influence or inspire your artwork? We’d love to hear about your experiences and see any images you have to share! 

“My husband and I had to sleep separately”

We are currently running a sleep appeal. Has your child ever had problems sleeping? Here’s Sarah’s story.

Florence has autism and sensory processing disorder. For five years Florence wouldn’t sleep alone, meaning Sarah and her husband slept in separate beds so one of them could be with her. 

Florence always had sleep problems but they became worse as she grew older. My husband Nick and I had to sleep separately to guarantee some sleep for at least one of us. We had to stay in separate rooms because Nick was getting up at 6am to go to work and didn’t get back home until 8.30pm.

It was important from a family perspective that he at least got sleep on some nights so he could function at work. I could sleep when Florence was in pre-school, then Nick would take over at the weekends or nights when his next day was not so busy. We lived very strange lives.

We tried Florence sleeping in with her sister Isabella, because we thought she was scared to be on her own, but she still wanted us to stay with her until she went to sleep. She’d get off to sleep at 10.30pm and then be up again at 11.30pm. When she woke, she would be wide awake immediately and say she was bored.

Sarah with her husband and two daughters, sitting in a field
Sarah and her family

The toll of no sleep

It was difficult being in separate rooms because Nick is my true love. But part of Flo’s autism is her desire for routine and giving her that routine, at least, helped in some ways. However, because you’re under par having not slept, you have irrational thoughts all the time.

Because Nick and I were not sharing the same bed, I started to feel insecure about our relationship. If we weren’t the couple that we were it could have split us up. Fortunately our relationship is, and always has been, rock solid and it remains so.

Sarah, her husband and two daughters holding hands in a forest
Things started to change for Sarah and her family once she came across Sleep Solutions.

Discovering Sleep Solutions

I heard about Scope’s Sleep Solutions from a friend. I went to a workshop. It was ground-breaking for me, absolutely ground-breaking. Nick and I hadn’t had a night out in four years because we couldn’t get a babysitter that Flo would accept. We thought there was no end to it.

I came away from the Sleep Solutions workshop excited and empowered, and it wasn’t just me. I came home and shared everything I’d learned with Nick and we put it straight to work. The results were incredible.

Family life now

All of our lives have changed completely since this happened in June 2014. Florence sleeps well regularly and we still can’t believe it. I think I have just about caught up on my sleep after five years.

I don’t have bags under my eyes anymore. I have energy again and I feel like I’ve got fun in my life. I can spend time with my kids without being tired all the time. Family life is much better; Isabella can spend time on her own and Florence is much nicer to Isabella because she isn’t so tired all the time.

On last year’s summer holiday Nick and I spent every night of the two weeks in our own bed, with the girls in their room – that had never happened before!

Sarah is the face of our sleep appeal this summer.

Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

Disability Innovations: Pimp my accessible ride- GoBabyGo

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 Go Baby Go?

GoBabyGo is a project which  transforms off the shelf electric children’s toy cars into accessible masterpieces – think pretty pink Barbie electric cars or miniature Lightning McQueen’s with switches and body support. Rather than parents purchasing expensive accessible vehicles or wheelchairs, GoBabyGo provides the know-how for people to adapt off the shelf cars at a much lower cost. Their guide takes you through step by step modifications for electrical and body support design elements.

Dr Cole Galloway, creator of GoBabyGo said “Interacting with kids and adults out in the world and gaining a little independence are crucial to early development,” Plus, these cars help kids feel included, “the disability no longer causes them to miss out on playtime or making friends—now they are able to participate. Other kids see the girl in the Barbie car and say, ‘Wow, can I play with you?'”

What’s the story behind it?

Launched in 2006, GoBabyGo is a collaboration by Cole and Dr Sunil Agrawal from the University of Delaware in the USA. As part of their research around mobility for disabled children, they started adapting ride-on cars and they are using their work to enable people to adapt ride-on cars for children in their communities.

The idea came to Cole while working on a high-end robot for movement-impaired children. “It occurred to me that a solution doesn’t always need to be sophisticated to work well,” Cole says. “It can be simple, like a toy.”

How does it work?

As Cole says “Fun is key here—it unlocks brain development and exploratory drive for the child, and ignites active, engaged play with adults and peers. When your main goal is mobility and socialization of young children and their families, you can’t ask for better collaborators than Barbie and Mater [Lightening McQueens best friend in Cars].”

Cole started modifying toy vehicles, which cost around £95 ($150), to suit each child’s specific needs—moving the go pedal to the steering wheel as a switch or adding a head brace for neck support. The adaptations can cost less than £65 ($100) in parts, and can be done easily at home, making it a much more affordable option than specialist wheelchairs. “Paediatric power chairs cost around $25,000 (£16,000) and can weigh up to 150 pounds or 68 kilos,” Cole explains. “Not only are these cars more affordable and relatively easy to adapt, they’re also portable, so parents can take it to the playground or park.”

Although Cole and his volunteers have adapted many toy cars themselves (and host free workshops across the U.S.) their free online guide means parents and clinicians can now adapt the vehicles themselves.

What is the potential?

Because the GoBabyGo team don’t generally do adaptations themselves, there is no limit to the number of people that could benefit. The GoBabyGo website includes a number of contacts across the USA and internationally (at time of writing including Brazil, Spain, Canada, Poland and Israel) who can help guide people taking on a GoBabyGo project for the first time. So far there are no contacts in the UK, but we hope it’s only a matter of time.

Meanwhile, the team is not resting on its laurels and has already started looking at some really interesting new projects including developing kid-friendly exoskeletons to promote upper-body movement and a harness system to provide partial body-weight support.

What we like about it

Clearly the users of this product love it. One parent commented to Cole that “In two years, I’ve never seen my daughter this happy. Please don’t ever stop doing this.”

We think GoBabyGo is really exciting because they’ve broken down adaptations and made it simple for people to create an accessible option for disabled children that support their independence at a more affordable price. Plus it looks really cool!

Learn more about the great program.

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 you’ve seen, please email innovation@scope.org.uk.

Andrew McDonald takes part in the London Triathlon for Scope

Scope chair Andrew McDonald is getting ready to compete in the team relay category of the AJ Bell London Triathlon series on 8 August.

Andrew, who will swim 1.5km in the race, will be joined by Finbar O’Callaghan, a consultant paediatric neurologist at Great Ormond Street Hospital, who will be doing a 40km cycle, and Jonathan Hoare, director of Investor Networks at ShareAction, who will run 10km.

The team has chosen to raise money for Scope and the Cure Parkinson’s Trust.

Andrew, who is a trustee of the Cure Parkinson’s Trust, says: “None of my team has taken part in a triathlon before and so we thought we would begin with the biggest in the world, the London Triathlon.

“We wanted to do it for two causes close to our heart: Scope, the disability charity and The Cure Parkinson’s Trust. Roll on 8 August!”

Mark Atkinson, interim Chief Executive of the disability charity Scope, says: “We’re delighted that Andrew, Finbar and Jonathan have decided to take on the London Triathlon for Scope and The Cure Parkinson’s Trust.

“I know that Andrew will approach this challenge with the same energy and commitment he applies to everything he takes on. We wish them all the best of luck for the event.”

Andrew was appointed Scope chair in October last year.  He had a successful career as a senior civil servant, most recently as chief executive of the Independent Parliamentary Standards Authority.

He was diagnosed with Parkinson’s disease in 2007 and has incurable prostate cancer.

Sponsor the team.

“Crocheting on the tube has pushed me out of my comfort zone”

Elisabeth Ward works in content marketing, and has an upper limb congenital amputation. Despite some challenging roadblocks, Lis likes to be creative and keeps a blog of her successes, difficulties, and more

I couldn’t find my craft

I’ve lived with my disability for 25 years. I’ve grown up facing challenges, finding my way around things so that I’m not excluded. I’ve always been a creative person. I enjoy drawing but art classes where I had to actually make or build something were just depressing, fiddly and frustrating. Everything I made looked like a child’s creation!

This stopped me making crafts for ten years – why put myself through that disappointment and frustration, because I lacked a second hand?

A knitting obsession was born

However, jealousy, stubbornness and determination threw this reluctance to the wind when I saw a friend become a knitter. One minute she had a ball of yarn and the next it was a cutePhoto showing one foreshortened arm holding a knitting needle and pink yarn strawberry hat. I wanted to be able to do that. I wanted to be able to start with materials, and end up with something that I could proudly say I made.

But I watched her knit and I couldn’t see a way around it. Two hands seemed to be essential. I looked at some YouTube videos, even checked out one-handed knitting videos (there weren’t many), and decided to just get some needles and yarn – I’d work out a system as I go. I found that holding a knitting needle under my arm and wrapping the yarn around my amputee arm was sufficient enough to allow me to knit with my left. From that point I was addicted. I felt confident and good, in my mind I had just achieved the impossible and it felt amazing.

Therapeutic benefits

Aside from the sense of achievement and excitement, I found knitting incredibly relaxing and therapeutic. I often worry about stuff I can’t control, from work stress to disability stress to general life stress, I feel like I’m juggling so many balls and with no right hand to catch them, I have to scramble around to keep them up in the air flying in all directions. Well, that’s how it feels anyway.

However, the repColourful wool knitted into s scarfetitive motion of knitting is one of the most relaxing things I have discovered – the familiar movement is comforting and calming in a way that is hard to describe. I’ve had days where unwinding from a hard day has seemed  impossible until I’ve picked up my knitting needles. I think that’s why it is so addictive – having your hands, or hand, busy, can help stress, anxiety, even sadness and anger leave your body. It’s almost magical.

Then came crochet

Once I mastered knitting, I had the bug and wanted to try crochet. This seemed simpler, one-handed even, as most of the yarn work was left-handed. It was trickier than I anticipated and very fiddly – I had to buy ergonomic hooks so that I could hold the hook between my amputee hand and my leg.

A selection of crochet squares in different coloursCrochet required perseverance and eventually I grasped the mechanics with my hook wedged between hand and leg. I sometimes find myself doing things a harder way because I haven’t taken a step back, looked around and thought ‘what can I use to make this easier?’. I’m usually too focused trying to do things as though I have two hands. But sometimes you just need a bit of help, even if it’s from an inanimate object. So I realised after about a week of practising that the ‘strap’ I use to hold my knife while eating would work well to hold my crochet hook.

I was able to speed up dramatically and it almost felt as though I had two hands.  My second craft addiction was born and I now live in a house overflowing with yarn!

It’s given me newfound confidence

I crochet on the tube as it’s easy to stop and start on the go, so I make a granny square during my commute. This takes every ounce of self-confidence I have. I don’t like people staring at my hand. I know it’s human nature but it makes me feel less human, like my hand defines me in their eyes, and I’m seen only as disabled.

A crochet circle with colourful patterns on itWhen I crochet, it’s different. People still look and stare, but now they see that despite missing a hand, I am capable of creating something beautiful, that I am many things and not defined by disability. It may just be in my head, but I feel that those watching me crochet one-handed see more than just a disabled girl. I also figure that the more people see it the less they will be shocked by it, helping to break the taboo.

Before, I would hide so that I wouldn’t be judged on my hand rather than my personality, I would hide so others wouldn’t feel uncomfortable or alter their behaviour. But crocheting on the tube has pushed me outside my comfort zone, helped me to not hide my hand when I leave the house.

Sense of achievement

Creating crafts has boosted my confidence, reduced my stress, helped me to find a peace within myself and has given me a pride and sense of achievement that I’ve never really had before. It’s helped me truly believe that I’m not defined by disability, I am defined by me, by my individuality, by my determination, by my weaknesses – I am a whole, not made up of just one but many parts.

My life has transformed and I hope to help other disabled people find their therapy in learning to knit or crochet, sharing my methods so they can find theirs – are you up for the challenge?

Do you have any creative hobbies that you find therapeutic? Elizabeth is on our online community now and would love to hear from you. You can also talk to her on Twitter @ElisabethWard04

Creating theatre for people with profound and multiple learning disabilities

Frozen Light theatre company started from a very simple idea, writes co-artistic director Lucy Garland: we love going to the theatre so why shouldn’t people with Profound and Multiple Learning Disabilities (PMLD) have the same opportunity? 

Both Amber Onat Gregory and I (co-artistic directors) had been creating small-scale sensory storytelling shows in special schools since 2007. Amber worked as a teaching assistant and I was a support worker at a day centre and community support team for adults with learning disabilities. We had got to a stage where we wanted to create larger scale productions in theatre venues. That’s how Frozen Light was born.

We started the company in 2012. Our first show was Tunnels, an underground adventure for teenagers with PMLD, which toured to 18 theatres across the UK, and was very well received. Building on the success of Tunnels we wanted to create a show that was bigger and better, so we created The Forest, with generous support from The Arts Council and several other Trusts and Foundations.

What makes Frozen Light different?

Conventional theatre may not always be appropriate for our audience. The stage is very far away and you have to sit still and be quiet. We’ve removed these traditional theatre conventions and have explored new ways of working that makes theatre appropriate for people with PMLD.

We do this in a number of ways. To begin with, our shows are only for six people with PMLD, their carer/companions and 12 additional friends and family members. This means that we create an intimate performance. Many of the sensory elements of our show take place on a one-to-one basis, ensuring that everyone is fully engulfed in the atmosphere. We also sing to each individual audience member, a song that includes their name. Making the production so personal really brings everyone together.

As a company we are passionate about stories, so we always put a story at the heart of our work. We look at the story we want to tell and think how we can communicate this on different levels, other than just the spoken language. This is where the multi-sensory comes in. We take each part of the story and add a sensory element. In The Forest, for example, we have a fire, so we take pieces of wood that smell like wood smoke around to each member of the audience.

In this production we wanted to push the multi-sensory even further, we did this by creating a set that is also sensory. The floor is reflective and the theatre space smells like a forest. We find that the multi-sensory elements allow us to communicate with our audience on many different levels and allow us to enter their world rather than forcing them to enter and conform to ours.

Creating a safe space

We work really hard to create a safe space. Many of our audiences have never been to the theatre before, and going to the theatre for the first time can be a scary experience. We create visual stories – which explain through pictures and words what will happen during the show and what the theatre looks like – and send them out to each audience member before attending. When the audience arrive, they are greeted by a member of Frozen Light and gently guided into the performance space, where we ensure they are settled and comfortable before the production begins.

We never expect anyone to sit still or be quiet in our shows and are more than happy for audience members to leave and re-enter the space as many times as they need to. We have had audience members come and sit on stage with us and or peek through a crack in the entrance door. We really don’t mind, we just want everyone to engage with the show in a way that is comfortable for them.

The Forest premiered last month at The New Wolsey, Ipswich. It will now go on tour to 26 venues across the UK starting at the end of August 2015. For more information and to view tour dates, please visit the Frozen Light website.

“You don’t need to be tall or large to be a hero.”

Lola Olson is Scope’s Interim Digital Content Manager. For our End the Awkward campaign, Lola got to interview film star Warwick Davis. Lola tells us what it was like meeting a childhood hero.

I stopped growing when I was three. Medically this is called a “failure to thrive”.

My parents could not afford health insurance, so since I was three I’ve taken injections of growth hormone given to me as a charity donation.

My disabled childhood film heroes

Films and television shows meant a lot to me as a kid, and they still do. I’d often watch them over and over to memorise every word. Seeing people with the same conditions or situations as me made me feel less worried about my disorder.

Lola Olson wearing a Willow t-shirt.
Lola Olson wearing a Willow t-shirt.

Last year, I got to meet a big hero of mine at the Destination Star Trek convention. LeVar Burton plays Geordi La Forge, a blind engineer who wears a “Visual Instrument and Sensory Organ Replacement” or VISOR allowing him to “see” using electromagnetic signals.

I was born blind in my left eye but when I was about ten, my vision rapidly decreased and my eye doctor said I was going to be completely blind very soon.

Seeing Geordi La Forge in Star Trek made that a lot less scary for me because, even though he isn’t “blind” with his VISOR, I still felt like if Geordi La Forge was blind, it wasn’t such a bad thing to be. I was glad to be able to tell LeVar Burton what it meant to me to see a disabled character play a prominent role on the starship Enterprise.

Meeting and interviewing Warwick Davis

This year, as part of Scope’s End the Awkward campaign, I had the privilege to interview Warwick Davis, another one of my childhood heroes. Davis is the star of Willow, a 1980s fantasy film where Willow saves a special baby from an evil queen. There are a lot of things I like about Willow. It contains strong female characters, for one.

Davis, along with other actors with dwarfism, play a race called the “Nelwyns” who are a diverse bunch of nice and not so nice people. Average sized people, such as Mad Martigan played by Val Kilmer, aren’t called “humans”, thankfully. Instead, they’re called “Daikinis”. In most films, average sizes folk play “humans” while actors with dwarfism play other worldly creatures. Being like a Nelwyn was a compliment, not something that would make me inhuman.

I often used films and television shows to understand myself better. I understood that Willow, and all of the Nelwyns, had something like I had. Warwick Davis playing a hero in his own right sent the message to me as a kid that I had nothing to worry about. Even if I ended up being shorter than most of my peers, you don’t need to be tall or large to be a hero.

I met Warwick while he was being filmed for our awkward moments film. The filming day was a bit hectic, with Warwick popping in between a speaking engagement, but it was also slightly surreal. I nearly had to pinch myself as I sat in the background as an extra.

My interview with Warwick lasted for 15 minutes, but it passed by as quick as 15 seconds. I didn’t have much time to be nervous. But I did have time to laugh at  his jokes and absorb him talking about how important it is for people to  approach life with a fair amount of humour.

Shortly after my interview, I got an extra 30 seconds to exclaim my love for Willow before Warwick went to talk to a packed room of Oxford students about End the Awkward and some of his upcoming film work.

I want more heroes in films

Warwick Davis as Willow Ufgood by 20th Century Fox.
Warwick Davis as Willow Ufgood by 20th Century Fox.

Today, because of my growth hormone treatments, I’m 5’1″ (and proud to be short!). I don’t really say I have dwarfism because there are clearly a huge set of obstacles I don’t have to face and that I could never really speak about.

I do know how important it was to see someone like Willow in a feature film not hidden behind a costume. Many actors with dwarfism end up in roles where they wear full body costumes or heavy makeup. The fact that seeing Warwick be in a film more or less as himself was important to me leads me to believe that it must also be important to others with conditions like mine.

I can only hope that in the future more varieties of roles with depth will be offered to disabled actors so that more disabled people can see themselves represented in positive ways.

For more information about our End the Awkward campaign please visit the End the Awkward page. Do you have an awkward story? We’d love to hear it. Share your awkward story with us or tweet us your experiences of awkward using #EndTheAwkward.

“Oliver sees details the rest of us miss” – a young photographer’s story

Oliver is a young nature photographer who happens to have Down’s syndrome. Here, Oliver and his mum tell us what photography means to him.  

Q&A with Oliver

Scope: When did you first start taking photos?

Oliver: I was little – I was about 10 years old.

Scope: What is it about nature that you find so interesting?

Oliver: I like wildlife, I like birds and I like the landscape and taking pictures of the trees. I like water and I like going for walks out into ‘the wild’ and the countryside.

Close up photo of an eagleScope: Do you have a favourite animal?

Oliver: I like birds of prey and I really like long tailed tits.

Scope: How did you feel when you sold your first photograph?

Oliver: We had an exhibition and lots of people came to see my pictures. I gave a speech and we sold lots of pictures and with the money I bought a Chinese takeaway for us on the Sunday night when we finished, and bought a holiday in a cottage in Wales in the middle of nowhere! I’m very proud when I have an exhibition.

Scope: If you weren’t taking photos in your spare time, what do you think you’d be doing?

Oliver: I play football and snooker, and I don’t do so much skateboarding so much anymore. I read my books and my magazines and I like to watch TV. I still do bird-watching and walking in the countryside even if I don’t take pictures with my camera.green forest and woodland

Scope: What would you say to other young disabled people who don’t have much confidence?

Oliver: Just do it. Just go out there and do what you want!

Scope: How have your followers on Facebook and the publicity around your photos made you feel?

Oliver: It’s good. I like it. My fans say ‘that’s amazing!’ about my pictures and write messages to me. Yeah it’s good. I like it when we get more places to put on the map!

Wendy, Oliver’s mum

Oliver was born with Down’s syndrome, and severe cardiac issues requiring open heart surgery at three months old. During his early years he was also diagnosed with severe hypotonia (poor muscle tone) and verbal dyspraxia. I was told he wouldn’t be able to take part in sporting activities, and that his speech would probably never reach a point where he could be understood by an unfamiliar lA baby photograph of Oliver with blonde hairistener. However with belief, determination and input from myself and Oliver’s big sister Anna (who was eight when he was born)  by the time he was eight years old he was skateboarding as well as playing football, basketball and snooker, and at 10 years old was asking perfectly clearly for a Subaru Imprezza with a spoiler on the back and a Bugatti Veyron for his birthday!

Oliver is testament to the fact that anyone can achieve and prove negative predictions to be wrong, when they are surrounded by optimism, belief, determination and encouragement. My partner Mike has been best mate and stepfather all rolled into one for Oliver – they both love wildlife, the countryside, and bird-watching. Mike came into Oliver’s life when Oliver was nine. When Oliver was about 10 or 11 he started to want to take photos “like Mike”.

A close-up of some green ivy leavesMike’s targeted tuition and guidance has helped Oliver to use the world of photography as both a tool for him to record what he sees in the way he sees it, and as something which brings Oliver a great sense of pride and self-esteem. He takes pictures of everything and anything which ‘catches’ his eye and will spend as much time and effort on a torn and ragged leaf or some broken sticks as he will on a beautiful bloom. He loves the light catching anything and particularly water. He will spend ages capturing splashes at the bottom of a waterfall or in a rocky river. Birds are probably his greatest love and his knowledge and ability to identify any bird at a glance and even from a distance is astounding. Oliver takes pictures of things other people walk past because he notices the detail the rest of us miss. He sees beauty where we do not, and to a certain extent his having Down’s syndrome ‘releases’ him from the ‘rules’ and expectations of what is perceived to be worthy of a picture, which the rest of us adhere to without even realising. Oliver makes weeds look brilliant!

He is a truly inspirational young man who loves life and loves what he does, and seeks to be a ‘professional’ earning a proper income from his talent. His achievements are changing and improving the expectations A robin standing on some grassof others, championing disability, and helping to banish outdated and negative stereotypes associated with Down’s syndrome. We receive so many heart-warming messages from parents of disabled children explaining the huge difference Oliver has made to their lives by restoring hopes, dreams and aspirations for their children. He illustrates just how important it is that we value and enjoy diversity in society, and spreads the news that ‘difference’ can be something to be truly celebrated.

Oliver was recently featured in a lovely film piece on the One Show, and on BBC news worldwide. He’s currently crowdfunding for his first coffee table book to be published – so get in quick and bag yourself a copy of the first edition. 

You can visit Oliver’s website to see and purchase his photographs as prints or greetings cards. You can also like Oliver’s Facebook page and get up to date news from his sightings in your newsfeed. Feeling inspired?

“Dignity is for everyone, everywhere, always”

It’s the summer holidays, so plenty of time for family trips! But what if you can’t go anywhere, because you won’t be able to use the loo?

Changing Places campaigns on behalf of disabled people who can’t use standard accessible toilets. They need changing places toilets which are publicly accessible with enough space and the right equipment, including a height adjustable changing bench and a hoist. Here Sarah, a campaigner for Changing Places explains why it’s so important. 

I’ve been a Changing Places campaigner for four years. I became involved in the campaign after taking a young woman with profound and multiple learning disabilities I supported on a flight, only to realise that there was nowhere to change her once we arrived at the airport. I am a learning disability nurse and fighting the corner for people with a learning disability is something I do every day. I find no other campaign more worthy of my time.

Changing Places are fighting for the most basic of rights, the right to use the toilet. That’s right, there are many people out there, who daily, are being denied this right. Over 250,000 people in the UK need a changing place. A changing place differs from a standard disabled toilet as they are publicly accessible with enough space and the right equipment, including a height adjustable changing bench and a hoist.

Two images, on showing a father with his disabled child lying on a mat on a toilet floor, and one with a mum helping her disabled child in a hoist in a much larger changing room
On the left, Alfie and his Dad having no choice but to use the toilet floor. On the right, Margaret and her daughter Julie use a changing place.

Karen says “it’s impossible to go out, because of the lack of changing places, my son is too heavy for me to lift even try changing him on a floor of a disabled toilet is impossible.”

Often without a changing place families and carers have no option but to change their loved ones wherever they can, and often this will be on a toilet floor.

Margaret, a Changing Places campaigner says, “It’s changed my daughter’s life and mine. She can’t stand or walk so can’t get onto a toilet. We had to lie her on wet, smelly, dirty toilet floors. At airports we had to change her on baby changing room floors, the immigration room floor and the prayer room floor. It was more than a mother could tolerate, so I made it my ambition to change things.”

Our request is simple. For larger businesses to join our cause and install a changing place. Often without a changing place families do not go somewhere simply because they cannot. Would you go out knowing the second you needed the toilet you would have to come back home?

A big bright clean changing places room with a hoist, changing bed, toilet and chairs
The changing places facilities at East Midlands airport

Businesses are not just missing out on the quarter of a million people who need these facilities, but are also missing out on the support and custom of their families, friends and carers. As the Extra Costs Commission report recommends, businesses need to listen to and understand the needs of disabled consumers, and recognise the power of the purple pound. They might just find that they could reap the rewards.

I’ve been running the Facebook page behind Changing Places since 2011 voluntarily. We are a community of campaigners, families, carers and more importantly people who are in desperate need of these facilities themselves. We fight daily for dignity, accessibility, and equality, but I do wonder why in 2015 this is still a battle. Please join us in making the world a better place for the most vulnerable people in our society; dignity is for everyone, everywhere, always.

The UK has 750 changing places, and counting.

Have you had any similar experiences? Or have you used a changing place? How did you find it? 

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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