‘I rely on my PA – they are my arms and my legs’

This is a guest post from Scope trustee Rupy Kaur, who tells us about  appearing in the BBC3 documentary Wanted: A Very Personal Assistant. 

When I applied to be on BBC 3’s Defying the Label series, I wasn’t looking to be the next top model or new presenter; I wanted to raise the issue of how important it is to be a personal assistant (PA).

The two-part documentary, Wanted: A Very Personal Assistant, airs on BBC3 at 9 pm tonight and follows several disabled people, including me, looking for a new PA.

For two weeks the film crew followed me trying out a new PA and at the end of the trial period I had to decide if she was hired or fired… you’ll have to watch the programme to find out what happened!

What does a PA do?

There are many misconceptions, about the role of a PA. I get the feeling people think the job will mean they can have an easy life – just wiping someone’s bum… they couldn’t be further from the truth.

I’m 27 years old and have cerebral palsy. All my limbs are affected and I use a wheelchair. I can’t do much of my personal care myself, so I need help with getting up and getting dressed.

I rely on my PA to help me with everything – they are my arms and my legs. I have a team of people that work around the clock to give me care seven days a week.

I live at home with my family but if I need to stay somewhere overnight, my PA will too. They’re there to help me do what I can’t do myself.

As well as helping with day-to-day stuff like arranging doctors’ appointments, I need my PA to help me with admin, emails and assist me at Uni, where I’m studying for a Masters in Health Psychology. They also need to be aware of the work that I do to support Scope as a Trustee.

‘I’ve had lots of bad carers in my time’

I’ve been receiving care since I was 15 years old.

Back then we called PAs carers. I’ve had lots of bad carers in my time. Especially in the early days… In fact I would go as far as to say some of the people were atrocious. They used to waltz in whenever they felt like it, mostly in pairs which often made me feel left out. They would regularly ignore me and my needs, spending their time catching up on the antics from their weekend – which was very educational for a 15 year old!

Some smelt of stale alcohol and were partial to paying themselves over the odds for my care. They often exaggerated the amounts on the cheques they needed to write on my behalf. I can’t write cheques but there was no safeguarding me from this.

At the time, I was young and not confident to challenge them. I was just happy that they were there to help me go to the toilet and get from A to B – I didn’t know what my expectations should be.

I guess all these bad experiences have made me clued up on what to look out for now. I’m no Alan Sugar but I’m very particular about who I recruit and take the process of looking for a PA very seriously – I mean wouldn’t you?

What I’m looking for in a PA

Ideally I’m looking for someone who is open minded, has initiative, who is friendly and ultimately someone I can trust.

I could train anyone to use a hoist or to cook but finding someone who you can connect with is a lot more difficult.

Your relationship with your PA is very intricate. You’re someone’s boss – but you’re relying on them for intimate care. So finding the right carer means absolutely everything.

To make things easier for any new PA I hire, I have produced a 15 page handbook for them to read – not because I’m fussy but because I have complex needs that would take months of training for me to explain everything to them. My PA’s have kindly compiled notes to help people understand my impairments and my needs.

Although I really enjoyed my time with the film crew and sharing my experience I truly hope that it also goes some way to show how important the role of a PA is.

Find out more about Wanted: A Very Personal Assistant.

Doing more good with Digital: our partnership with Virgin Media

How can we make technology transformational and accessible? Christina Panayiotou, Senior Account Manager from our Philanthropy and Corporate Partnerships team, looks at our exciting new £1m partnership with Virgin Media.

Our partnership with Virgin Media began when Richard Whitehead, British double leg-amputee and Paralympic Gold medallist, ran 40 marathons in 40 days – from John O’Groats to Land’s End. Virgin Media championed him on our behalf which helped raise nearly £200k.

With such a brilliant start, it’s no surprise that over the last two years we’ve continued to receive a phenomenal amount of support from Virgin Media, which we’re hugely grateful for.

Together, we had a simple but essential task: to improve the experience Virgin Media could offer to customers with complex needs, and those who support, work, or live with disabled people.

We’ve been working in partnership with the disabled people’s organisation Disability Direct and their commercial division ‘Nimbus’ to provide consultancy advice and guidance to Virgin Media on the social model of disability. This included supporting Virgin Media on the language, tone of voice and accessibly of some of their online web pages.

The future of the partnership

Like every good working relationship, ours has strengthened over time. We are thrilled to announce that we will work with Virgin Media as its official national charity partner for a further two years to make even more of a positive and enduring difference.

Between now and July 2017, Virgin Media and Scope’s partnership will transform the lives of thousands of disabled people and their families in the UK through developing national projects and campaigns that have technology at their heart.

Like Virgin Media, we believe digital makes good things happen. For the 11 million disabled people in the UK, technology can be transformational; providing a voice, enabling people to live independently and unlocking access to education and work.

We’re excited to see what else we can achieve together and look forward to sharing the success stories with you as the partnership progresses.

Find out more about the great work we’re doing with Virgin Media on our Corporate Partnerships page

“Do something you love. Disabled or not, it’s good for the soul!”

Jenny Brownlees is a freelance fashion journalist and stylist. She has ME, and went through a lot of tough times to get where she is now. One thing she found helped her was to follow her creative heart. Here she talks about her experiences.  Jenny on holiday - standing on a balcony with the blue sea behind her

I was 16 when I became unwell. Enjoying life and school, becoming unwell in my teenage years hit me hard. I was very creative both in and outside of school. Happiest in art and textiles classes when doodling, making a mess, sewing, designing, I was obsessed with ‘making’ in all its forms. I loved every aspect of fashion and art. It meant so much to me, and was a huge part of my personal identity.

In the years that followed me falling unwell, I dealt with an ‘invisible illness’, many misdiagnosis’, followed by an 18 month wait for the right diagnosis that was filled with anxiety, panic attacks and depression, as well as feeling so poorly that I can’t even begin to put it into words.

I found I was suffering with ME, and quite severely too. I could list all my symptoms, but I would need the entire content of this blog to do it, so I won’t! After such a long struggle for the right diagnosis came six years of suffering, where I was bedbound for months on end, then housebound for years that seemed to both last a lifetime and pass in minutes. I felt utterly terrible, both physically and mentally.

I, like most had a plan, a path I thought my life would follow; do well in my GCSEs, do well in my AS and A Levels, go to university then get a good job. Easy, right? This didn’t happen as planned, and to say I was devastated would be an understatement. I now write for a living but words fail me when I try to convey my feelings about those years to others.

There is a piece of advice I will always remember from this time, trying to get through a school day I’d forced myself to go into (which as usual had ended up with me having to being taken home.) A lady who was a carer for disabled people, seeing my distress told me “Everyone has their own path. There’s not one right way. You will get to where you want to be, you just might take a different route, and that’s ok.” At the time I found it very hard to believe, now looking back, nearly 10 years later, it sticks with me. Hindsight is a funny thing.

The thing I love most about art, as well as its broad spectrum, is that creativity has no bounds, it can’t be measured. If you make something, in any capacity, you’re an artist.

What you’re creating doesn’t have to be a masterpiece. A love for card making could mean once a week flicking through a craft magazine and thinking about something you may try and make one day, or not! Still, you are engaging in something you love and I think that is a must for everyone, disabled or not. It’s good for the soul!

Photo of a model wearing pressed flower brooches on her coatBeing creative gave me something to get up for. Flicking through a fashion magazine kept me in touch with a world I loved.

My health, I didn’t have. But time, I did. Time I couldn’t use exactly as I wanted, but if I was adaptable and tried to manage my expectations (I’ve always been a perfectionist and hard on myself) I could feel proud of my days ‘work’. Even if it’d been a single scribble on a pen pad. Due to feeling constantly exhausted, I would say things took me double the time but that would be generous, more like five times as long. I read a quote recently that summed this up perfectly: “So what if it takes you ten years, ten years will pass anyway whether you do it or not, so start now.”

I’m not saying it’s easy. The skills I learnt were built upon slowly, over six plus years, and I’m still learning now, but it gave me something other than my own plight to think about! Of course there were days, months even when I did nothing but lie in bed, but as soon as I did have a slither of energy, I tried to put it to good use. Even if you can do a tiny thing each day, a creative hobby, or whatever you love, it can really can give you a sense of purpose and worth.

I began thinking about what I could do with my time. I had always wanted to try photography, I was actually booked onto a course to do it in my free time outside of school, but had to cancel this when I got unwell. Photography was something I could do literally from my bed, I would photograph objects in my room at first! And this wasn’t with an expensive camera, just a standard point and shoot I’d had for years. I didn’t do it every day, but it progressed. I would take photos out of the window and eventually in the garden. Whenever I felt well enough I’d read online about DSLR cameras, and (over years) learnt to understand and operate one long before I bought my ‘real’ camera.

People always comment now, when I go for jobs or discuss my illness, that it doesn’t matter that I didn’t go to university, or do this and that I had planned, they can see I kept up what I could and that shows my enthusiasm. We are so lucky in this day and age, learning doesn’t mean having to go to a course or even go to the library to search and gather information, which takes time and energy I didn’t have.

The internet (once I built up my tolerance to working on the computer) was a huge saviour in my illness, information is so easily accessible. You can learn by simply asking Google! Youtube is an amazing learning tool, you can learn just about anything on there, and replay the video 300 times if you need to, stop and start and take it at your own pace. The same for free online tutorials. I played around with Photoshop for years, nothing formal, just trial and error, and now it’s such a great skill I use all the time. The same with my photography. The irony is if my ‘plan’ had have come true and I never got unwell, as I wished so many times, I may not have learnt something I now love!

I tried to keep up a few ‘hobbies’ so if it wasn’t a photography day, it may be a writing day. I wrote about how I was feeling, read online forums, The Fashion Spot, was a favourite. I didn’t even contribute by commenting, I just read the forums comments and felt involved, listening to others opinions was my way of keeping engaged with the goings on at magazines etc.

After many years, and many ups and downs, I began to feel better and my energy levels improved. I did some free writing work online for blogs and a few small magazines, volunteering to do this meant no scary deadlines if I wasn’t feeling well, but most of all I enjoyed it. Writing about fashion didn’t seem like work for me, even if it took me a long time to write one article. I kept up my photography and added my skills to my CV.

Pink t-shirt hanging up with lots of coloured beads suck to the frontCraft turned into career for me, I now write a weekly DIY column for an online magazine, where I make an item, then photograph it. I also write fashion and lifestyle articles for a number of different magazines. I know this is rare and I am so lucky to be at a place where I can do this, but it didn’t happen overnight. I think it shows though, anything is possible, disability or not.

I would say to people reading this that everyone is good at something. Everyone. Try things, don’t let yourself tell you you can’t; yes there’s a million reasons you shouldn’t do something, but listen to the one that says you should. Find your heart’s desire, and incorporate it into your life in some way.

I would suggest watching TED talks, they are so inspirational! Zach Anner on Youtube will make you laugh – ‘Milestones’ is a favourite video! Read Dr Viktor Frankl’s ‘Man’s Search for Meaning’, he will make you feel like you can do anything. Surround yourself with positivity. Don’t give up.

Feeling inspired to get creative? If you would like to see what I’m crafting next, writing about or creating, and a lot of pictures of my dog, you can follow me on Twitter and Instagram as @jennybrownlees.

“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.

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“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.

For more information, please visit the Frozen Light website.