The top disability moments that got people talking in 2014

This year has been a rollercoaster ride for disability issues. We’ve already looked at some of the highlights of our own work, so here are some of the other highs and lows that got you talking in 2014. 

Role models

Five cartoon charactersA Scope favourite ever since he produced three illustrations for our In The Picture exhibition, Quentin Blake wrote and illustrated his first novel, The Five of Us, featuring five disabled characters.

A petition asking for Disney to create an animated hero with Down’s syndrome caused a big divide in opinion. Some of you wholeheartedly agreeing, and some of you thinking that it would only serve to exclude other children.

In October the first Disability Power List aimed to celebrate the most powerful, influential and inspiring disabled people in Britain. It was great to see our previous chair Alice Maynard, and so many Scope supporters make the list!

Stella Young, the outspoken and much-loved disability campaigner from Australia, sadly died suddenly earlier this month. Her Ted Talk in April was hugely successful, after she said that as a disabled person, she didn’t want to be viewed as ‘an inspiration.’

Court rulings and changes to the law

Disabled parking bayThis year there have been many stories in the media about the misuse of disabled parking bays. There were stories of everyone from MPs to soap stars misusing spaces. One man made headlines when he refused to let his car get towed away. Chris Welch got so sick of people abusing disabled parking spaces, that he started a campaign to make it illegal to do so. It seems like lots of you can relate to this, as it stirred up a lot of debate.

It’s not just car spaces that have got people talking – in early December the High Court decided that bus companies were not responsible for telling passengers with pushchairs to give up their space to disabled people.

On the very same day the High Court ruled the closure of Independent Living Fund for disabled people to be lawful, dealing yet another blow for disabled people living independently.

This year also saw the controversial Assisted Dying Bill introduced to the House of Lords which wants to enable terminally ill people to request assistance to end their own life. No doubt there’ll be much more discussion of the bill in 2015.

Challenging awkward and offensive attitudes

As well as our own campaign, there were many other stories this year about attitudes towards disabled people. Columnist Divya Babbar highlighted some of the awkward, rude and sometimes ridiculous things some people think are OK to say to a disabled person. This really got you commenting!

Toddler in a wheelchairDisabled children and their parents also shared their experiences of awkwardness and disability when we had an incredibly popular guest blog from Mary Evelyn Smith. She gave some basic advise on how to talk to kids about disability (and Voldemort).

On the more negative side – many of you were angry to hear the story earlier this month of a disabled boy who missed out on a chance of meeting Santa due to a “lack of disabled access” at a theme park.

Two comments this year stirred up huge public debates. In April the Mayor of Swindon caused an uproar with one comment about disabled people. However the reaction was insignificant compared to the anger in October when welfare minister Lord Freud suggested disabled people could be paid less than the minimum wage.

Celebrating great attitudes

Early in the year a mum of a young girl with autism wrote a fantastic blog as a thank you to the man who sat next to her daughter on a flight. Dear ‘Daddy’ In Seat 16C soon went viral and had many of you in tears!

Scouts badges including a wheelchair badgeIn April, Scouts introduced new disability badges for Cubs and Beavers. The badges cover things like how to push a wheelchair, learning the promise in sign language and making an assessment of disability access.

At Halloween many people loved the story of a stepfather who constructed an incredible tank costume. His son has cerebral palsy and uses a wheelchair, and the dad wanted to make sure he wouldn’t miss out!

Sainsbury’s announced this year they’d been working with parents of disabled kids to create a more secure and accessible trolley. Hundreds of you told us the huge difference this could make. We were also pleased to see them include a seven-year-old model with Down’s Syndrome in their advertising. Let’s hope more supermarkets will follow in 2015!

We’re bound to have missed some! What disability issues do you think should have made the cut? 

Join in the conversation in 2015 by following us on Twitter and liking us on Facebook.

2014: a year in the life of Scope’s helpline

In 2014, Scope’s helpline received thousands of telephone calls and emails and responded to a huge variety of posts on Scope’s online community and social media networks. People talked about all sorts of things relating to disability, from housing to Motability, from recycling disability equipment to taking part in sport. When we add in the unique views of our information on the Scope website, all in all we reached over half a million people.

We thoroughly enjoyed hearing the reactions to the End the Awkward campaign and Strip for Scope. Thank you to all of you who got in touch with us, we enjoyed sharing your feedback.

We launched a revised version of the Parent Information Guide aimed at parents of young and newly diagnosed children and we have also been busy writing information products. Check out the Scope website for the following new information:

Training

It’s really important that we keep up with all the changes that are happening in the disability field so we’ve been on several training courses. We’ve attended training on changes to the Welfare system including Universal Credit and PIP and we’ve learned more about Healthcare Budgets, Direct Payments, Housing, Community Care and special educational needs. One member of the team attended a two-day training session all about sleep.

Places we’ve been

Occasionally we manage to get out of the office and meet people face to face. We’ve visited some DIAL advisory groups and had a stand at Kidz in the Middle exhibition in Coventry, the UK’s largest exhibition for parents of disabled children and professionals. We were present at the SEN and Disabilities Conference at the Royal Society of Medicine and visited the Royal Bank of Scotland HQ. And we managed to get out to some Sure Start Centres.

The team

Each member of the helpline team has a specialism aligned to one of Scope’s strategic themes. As well as getting general information on all aspects of living with a disability, you can speak to us in detail about:

We also managed to fit in an office move with little disruption to the service, thanks to everyone’s hard work. And we’ve just recruited an extra team member.

The enquiries we receive on the helpline really help Scope to understand the issues that people are facing. This means that (with your permission) we can inform our colleagues what you are telling us and they can use that information to decide what campaigns or policy work we need to do. Your calls about the delays to PIP were very helpful. We collected evidence and sent it to the Department for Work and Pensions to highlight the various problems claimants were experiencing. Your calls also contributed to the work we are doing with our Extra Costs Commission. We’re always looking for stories and case studies to put forward to our stories team to raise awareness of the issues affecting the people contacting us. All of this work continues and we are excited about the new challenges ahead in 2015.

So we’ve been extremely busy supporting disabled people and parents with disabled children and we’re really looking forward to the year ahead. Thank you to everyone who has contacted us in 2014 and may we wish you all a very Happy New Year.

For free, independent and impartial emotional support or disability advice, contact Scope’s free helpline on 0808 800 3333  or helpline@scope.org.uk. You can also talk to others online.

Innovation and co–creation at Scope

In Scope’s Innovation department, running projects involves testing early and often, and having the flexibility to change or even abandon ideas. In a guest post from Lindsey Caplan, she talks about how they’re testing a new innovation process:

At the start of October, my colleague Suzi and I had the opportunity to pilot the first stage of Co.Creator, a model for innovation. Zevae Zaheer developed the model and acts as a co-founder on many projects.

We were asked us to explore ways that we could enhance our Face 2 Face parent befriending service to expand its reach to people who don’t live near an existing service. She wanted us to see if we could develop our existing Face 2 Face online service to make use of social media and appeal to more people. The idea was that by combining our existing service with a digital offer, we could reach more parents and reduce costs.

Zevae‘s role as a co-founder was to guide us through various processes, test our hypotheses (guesses!) and help us identify possible solutions. We had an hour-long session with him each week. We all work in different parts of the country, so met online via tools like Skype, Google Hangouts and GoToMeeting, which meant that we could all see and hear each other. We both felt a bit apprehensive about meeting in this way but were surprised at how quickly we got used to it. It is possible to build great rapport during virtual meetings and we only all met in person at the end of the eight weeks!

The next challenge we both faced was getting our heads around the bamboozling language of innovation. Here’s a quick run down of some jargon:

Innovation Canvas – business information about a solution, including resources, funding sources and expected change.

Customer Script – customer responses to our hypothesis – is what we think what they think?

Value Proposition – the value that a customer could gain from our solution.

Pretotype – a quick, cheap test to check whether a breakthrough innovation appeals to its market.

Once we had mastered that, we were flying…literally, the pace was fast! Learning consisted of lots of reading, researching, watching various lectures online and ‘getting out of the building’. This means exactly what it says – not just sitting at a desk forming our own conclusions but actually going out and talking to the people who would be using our service.

We used Innovation Canvases to organise our thoughts and tell us who our customers were and then we created Customer Scripts. The scripts were useful in tailoring and framing our questions to ensure we were asking the right questions of the right people about the right things. The Value Propositions evolved from these conversations and helped us to come up with Pretotypes in the form of mocked up web pages that we then tested with customers.

At every stage, Zevae offered us support, guidance, encouragement and most of all, allowed us the freedom to think creatively and to not be afraid to pitch ideas, no matter how outlandish they seemed. We learned not to fall in love with our ideas and that it was OK to kill them off, if our research proved that we were on the wrong track.

This way of learning was a welcome and unique experience. Whilst there were challenging times – juggling this extra work with our day jobs and asking last minute favours of colleagues – the exciting moments we experienced when we stumbled across some fantastic and possible solutions made up for it! It’s great to now look at what we achieved, share learning and think about changes that could smooth the experience within Scope. We are looking forward to the next eight week ‘Solution and Scale’ stage of Co.Creator, where we expand the project team, develop and test one of the ideas we have come up with for real. Watch this space!

Scope’s 2014 highlights

2014 has been a really exciting year for Scope – full of awkward, nostalgic, sexy and some just Breaking Bad moments. We’ve rounded up a selection of just a few of the most memorable. Let’s hope 2015 is just as eventful!

Name change

We celebrated 20 years since we changed our name
from The Spastics Society to Scope, with a Parliamentary reception. We also looked at how life has changed for disabled people in that time.

The extra costs of disability

The Price is Wrong game show bannerCan an adapted BMX for a disabled child really cost four times the amount of the average child’s bike? Well yes, it can – and that kind of shocking fact is why you all got so involved with our Price is Wrong campaign and 550 challenge, to raise awareness of the extra costs that disabled people and their families face for everyday items.

Top films

Man bending over to talk to a wheelchair userOur End the Awkward adverts featuring Alex Brooker got almost 10 million views! They helped us to raise awareness of the fact that 2/3 people feel awkward when talking to a disabled person, mostly because they don’t want to offend or are scared of coming across as patronising. But we can all get over it!

Disabled model taking off his clothes in Scope charity shopThis year, our Strip for Scope film shocked everyone with a cheeky play on the sexy Levi’s Launderette advert, featuring disabled model, Jack Eyers. It was our most successful stock campaign –  we received over 1.2 million donated items to our shops.

We also created a film featuring disabled people talking about what the social model of disability means to them, the confidence and liberation it gives them – and how it can encourage everyone to think differently about what an inclusive society really looks like.

Face 2 Face befrienders

Two parents talking in a kitchen over a cup of teaWe were delighted to open new Face 2 Face befriending services in Oxford, Coventry, Lewisham, and three London locations – Islington, Waltham Forest and Redbridge, and Newham and Tower Hamlets. It means loads more parents with disabled children can get the vital emotional support they need, so they don’t feel like they have to cope alone.

Support and information

Our helpline staff have expanded on their lead roles in specialist areas, so they can give more thorough advice to people who need it, and share their knowledge within the team. The areas cover cerebral palsy, social care, welfare benefits, finance and housing, disability equipment and provision, early years, employment, and special educational needs. We also launched a new online community to reach even more people.

Get on your bike

Not only did over 4,000 people take up an events challenge for Scope this year, but we were thrilled to find out that we’ll be the official charity partner of the Prudential RideLondon–Surrey 100 for 2015. It’s worth a whopping £315,000 to Scope and means we have over 600 places for Scope participants.

New friendsRJ Mitte posing for a photo with a young disabled girl in wheelchair

And last but not least, we were very chuffed to welcome RJ Mitte, aka Walt Junior from the hit US drama Breaking Bad to Scope. He has cerebral palsy, but he’s never let it hold him back. He spoke to some young disabled people who are currently on our employment course, First Impressions, First Experiences, to tell them how he started his career.

What have we missed? If you’re part of Scope – what have been the highlights of your year?

10 Christmas present tips for parents and carers

The festive season can be a stressful time. Our online community has hundreds of practical tips to help you this season – from dealing with extended family to having days out.

Here are some of our favourite tips from the community for buying, wrapping and giving presents this Christmas:

1. Have a whip round

Friends and family never seem to know what to get George for Christmas and what they do give him nearly always ends up getting
broken or ignored. So this year I’ve suggested they contribute towards buying him a tablet, which he will definitely use. I think they’re quite relieved not to have the stress of choosing something for him.

2. Sparkly Christmas paper

For visually impaired children or those with a sensory impairment,
buy lots of sparkly Christmas wrapping paper as it’s very good for
catching and holding their visual attention. Gold, in particular, or anything with a rainbow/prism effect seems to work well.

3. A few of my favourite things

Wrap up some old favourite toys as Christmas presents if your child is not keen on opening presents as they have new and unfamiliar things in them. You can secretly hide some favourite things in the weeks leading up to Christmas – sometimes unwrapping something familiar is very reassuring!

4. Sometimes the simple things are the best

A couple of years ago we bought Reece helium balloons, and I think we spent about a tenner – and that was what he played with all day! Whereas everything else we got him, he didn’t want any of it!

5. Play with wrapping paper

Give wrapping paper to play with ahead of Christmas, cut, tear… so your child gets comfortable with the noise and look of it. Choose less
‘visually noisy’ paper and avoid patterns that can produce sensory
difficulties to your child.

disabled-girl-given-present6. Ready to go

When we give our daughter a gift, we make sure all packaging is removed, batteries are in, and it is set up ready to use as soon as she’s unwrapped it. For someone with limited attention and suspicion of new things it can make the difference between acceptance and rejection.

7. Spread out the presents

Don’t feel that all the presents have to be opened on Christmas morning in the traditional way. Our son would get so overwhelmed he couldn’t cope so it was much easier to allow him a few gifts at a time throughout Christmas Day and Boxing Day. He opened them all in the end without any tantrums and was much calmer and happier, meaning we all had a far more enjoyable time!

8. Design your own wrapping paper

Get your family to design wrapping paper. Simply buy lots of plain brown paper and allow them to have fun with paints in seasonal
colours.

Parents-with-disabled-son-unwrapping-Christmas-presents-half-size9. Opening cards and presents

My son has trouble with fine motor skills so I ‘doctor’ his cards and presents to allow him to open them easily. Makes for a much happier time for all and gives him a sense of satisfaction that he can complete tasks!

10. Don’t forget the giving

Help and encourage the person you are caring for to give gifts. This provides an excellent opportunity to work on social skills like thinking of other people, other people’s needs and interests and being kind and helpful. I support my daughter to make gifts for her family and friends. She also looks forward to actually giving out the presents as well!

Got your own tips to share? Share them on the community or let us know in the comments below.

(Photo credit: Katy Warner)

Reducing extra costs: our projects

In honour of International Day of People with Disabilities, the last Foresight and Innovation blog focused on how technology can benefit disabled people. We had some great responses to this theme and some of our students at Scope’s Beaumont FE college in Lancaster shared their thoughts on what difference technology has made to their lives.  This week, building on this theme, we are looking at products and services more generally and are asking what factors are most important to disabled people and their families when selecting a product, service or brand?

One of Scope’s priorities and themes is financial well-being. Our report Priced Out has revealed that disabled people spend £550 per month more on average on day to day items relating to their disability which is a big issue for disabled people, and so we have established an independent Extra Costs Commission to investigate the causes of these costs and identify effective ways to reduce them.

What are we doing?

Here in the Innovation Unit the problem of disability related costs has captured our imagination and we’ve set up ‘Project Thrifty’ to explore ways that Scope might practically help reduce these extra costs, perhaps by providing opportunities to people share their tips for lower cost alternatives through our digital community, brokering discounts on popular products, or potentially negotiating bulk purchasing opportunities.

We have also been developing a relationship with IKEA to see how their existing low cost homewares range could better meet disabled people’s needs. We had a great response to our survey, and initial research shows that some parents of disabled children are already using IKEA products in interesting ways. One mum on the Scope forum told us she has adapted an IKEA plant stand on wheels for use as a feeding pump holder for her child. It’s a fraction of the cost of the hospital version, and looks much nicer!

A few weeks ago we held a focus group with parents of disabled children, in the IKEA store in Wembley, North London. Within five minutes the group were talking about sawing the legs off children’s beds, adapting inflatable changing mats for use as play mats, and by the end they’d practically designed a whole new system for ensuring plates and cups don’t get knocked off the dinner table! Last week we held a focus group with adults and older disabled people who were equally creative in thinking about how homewares could be improved to better meet their needs. One of our favourites was an idea to create pull out surfaces at different levels in the kitchen to make it easier for wheelchair users to prepare food and rest hot pans or plates while they moved around the kitchen. The energy and creativity was astonishing and we have some great insight to share with IKEA when we meet them again this week.

Get in touch!

We’d love to hear your own views and experiences, to help us find ways to reduce the cost of living for disabled people and their families. In particular we’d like to hear about whether or not you use the internet to shop online, and what your thoughts are around this area.

Have a look at our questions about your experience of online shopping on our forum, and share your stories with us.

Q&A with Viktoria Modesta

On Sunday night, Viktoria’s promo video, Prototype, premiered to millions of people during one of the ad breaks of the X Factor final. We asked Viktoria about the project:

How are you feeling after the launch of your single Prototype? What reactions have you had?

So far the reactions have been almost all very positive. I have been lucky enough to accumulate people that follow my work and understand it. So far it has been very rewarding.

You have some incredible prosthetic legs – which is your favourite?

My Favourite is definitely the spike. It’s another level. It’s conceptual and something that hasn’t been done before. It’s an idea from a dream I had so it’s personal.

Do you think you get treated differently as a disabled person?

People react to you according to your attitude about yourself. A confident, genuine personality, with a positive outlook, doesn’t draw that much negative treatment, whether you are disabled or not. I also feel very strongly that I do not represent a large portion of the disabled community; I would never claim to be doing that.

Can you tell us about any ‘knock backs’ you’ve had in the past from the music industry? How did they make you feel?

I would like to think that the knock backs I’ve had were due to mixed things like wrong timing, wrong material. I don’t think I haven’t reached ultimate success yet because of my leg alone. In fact I think it’s very far from the truth. My values are that to be good at something you need to compete against every player regardless of details such as artificial body parts. I don’t expect charity or special treatment I would simply like to play on equal terms.

What has driven you to succeed?

Initially it was about survival and escape from Latvia and its soviet repression. Later in London it was about looking for a tribe to explore myself. When I was young, I spent a large amount of time in seclusion having treatment. So when I came to London I was like a kid in a sweetshop. I wanted to try everything – every fashion, every kind of movement. The turning point was my realisation that I needed to drastically improve my health, to be the person I was starting to form. When I eventually had an operation to amputate my leg below-the-knee things started to become clearer. It served my health and my life to the standard I expected. The last seven years have been the most magical, sometimes like a movie with crazy ups and downs. Now that my health worries are over, I am comfortable in my own skin. Recent support from amazing people like Channel 4 has eliminated any remaining insecurities I might have had from childhood. I am inspired to live a happy and passionate life where I can collaborate with people and contribute something back.

Which artists inspire you?

I’m an 80/90’s child. My first two records were Prodigy and 2PAC. It’s when I came to London in 1999 that my artistic influences really began – it’s a mixture of club characters, eccentric friends and performance artist. Creatively I never feel obsessed with one person but I really enjoy artists that mix it up with media and visuals. I think if you going to experience a show or a song you need the correct imagery to touch all your senses.

What advice would you give to other disabled musicians trying to break through?

Don’t expect things to come easy but also don’t feel like the world is against you. If you are passionate there are so many lovely people out there to help you.

You will inspire many people – what kind of role model do you want to be?

If anyone is looking at me in that way, I would like them to take away the importance of being true to yourself and not my specific actions because they were tailored for my life. I would like people to interpret my attitudes and apply however fits them.

The Disability Factor

What difference did the Viktoria Modesta’s music video make? Did it change attitudes? Did it increase opportunities for more disabled musicians?

Here’s what you had to say:

A million percent yes!

“About time we had some publicity in that world, you go girl!”

“This is absolutely brilliant! Disability should definitely be represented more in the media, it’s about time so well done Viktoria! x” – chellem90

“The music video won’t just benefit those disabled, but everyone, helping us to see how powerful we are as a human race, with the ability to achieve what we want in life.” – Soph

“About time too! Absolutely awesome. Love it. X” – Jenny

“Fab fab fab” – Margaret

I didn’t love it…

“Rather odd, not quite sure about it” – Anita

“…From what I have heard here, Viktoria is a young lady with an excellent voice, and I wish her well in her ambition.
I would just prefer that her publicity concentrated on her singing talents. Concentrating on, or indeed even mentioning, her disability is shallow reporting, and is not conducive to promoting inclusivity or acceptance…” – Geoff

“I personally didn’t like the song, but each to their own. It certainly illustrates well that a disability is not a barrier.” – Harry

It’s a “no” from me

“All this ‘not represented’ clap trap does more harm than good. Nobody should queue jump …! P.S. I speak as a disabled lady!”  – Mal

Tweet us or share your thoughts below.

Where are the disabled pop stars?

This weekend is the X Factor final – a night millions of us have been looking forward to.

But this year’s final comes with an exciting twist! Channel 4 is hijacking the occasion to launch Viktoria Modesta, a disabled pop artist.

On Sunday night, Viktoria’s promo video, Prototype, premiers to millions of people during one of the ad breaks of the X Factor final.
It’s rare to see a disabled musician singing to millions of people on one of TV’s biggest nights of the year – but Viktoria is planning to change that by bringing the disability factor to the masses.

(Warning: video contains adult themes)

Viktoria wears a prosthetic leg as the result of a long term health condition. At the age of 20, she took the radical decision to undergo a below-the-knee amputation to improve her mobility.

She views her amputeeism as empowering and part of her artistic expression. She believes it can thrill and influence her work and is not something which demands sympathy.

Viktoria famously performed at the 2012 Paralympics closing ceremony but has faced many challenges breaking into the music industry, due to the fact she is an amputee.

The singer wants to use the launch of her promo video as a platform to challenge attitudes about disabled people and shine a light on the stigma that many people like her face when trying to make it in the music business.

Earlier this year, Scope launched End the Awkward, a campaign which highlighted that many British people feel awkward about disability.

Scope research shows that 9 in 10 disabled people believe that more disabled people in the media would improve attitudes to disability – highlighting the importance of increased exposure of disabled people in the creative industries, including the music business.

What do you think of Viktoria’s new video?  Should the music industry be doing more to represent disabled people? 

Tweet us or share your thoughts below.

Colour blindness, on top of everything else! What next?

Guest post from Kathryn Albany-Ward, Founder, Colour Blind Awareness.

Just over five years ago we decided to move our then seven-year-old son to a new school where he would be able to play sport every day. He is a very sporty child and was looking forward to it but within a week he was no longer keen to go to school.

Nothing strange about that you say – plenty of children would get cold feet in a new school. But the unusual thing was his reason – he said he couldn’t see who was in his team for games. This was unexpected! Even more so because his kit included a reversible rugby top – olive green on one side and maroon on the other. In-depth quizzing revealed an astonishing fact – our son couldn’t see the difference between the two colours!

Here’s why.

rugby shirts
Normal colour vision

 

Rugby shirts seen with deuteranopia
Deuteranopia

I didn’t initially consider these colours to be red and green so colour blindness wasn’t on my radar. Only after other incidents dragged themselves up from the depths of my subconscious, such as the time he couldn’t tell the difference between lilac and sky blue fabric conditioner in the supermarket and the trip to the fruit farm where he picked only unripe strawberries, did I finally click that he might be colour blind. Wow, he managed to learn all his colours without us, his nursery school or four primary school teachers ever having a clue he couldn’t actually see them. How did he do that?

It turns out my son has a severe colour vision deficiency (CVD) and will never be able to see some colours. Here’s what he sees:

Pencils
Normal vision

 

Pencils seen with deuteranopia
Deuteranopia

Frustratingly his new school had no idea how to support him and I discovered that not only was there no meaningful information on the internet then, but also that colour blindness is not considered to be a Special Educational Need so there is no official guidance for teachers. Perplexingly, teachers are not trained in how to support colour blind pupils, even though 1 in 12 boys (and 1 in 200 girls) are affected – that’s one in every classroom! I found this shocking. Within a week I realised that my son was at a definite disadvantage, not just in the classroom but in everyday situations, so I set about raising awareness of colour blindness myself.

Having set up the Colour Blind Awareness website to help other parents and to provide information for schools, it took me another couple of years to realise the plight of children with CVD who also have other SENs to contend with.

I was suddenly struck by the idea of a bright non-verbal child, perhaps with severe cerebral palsy, trapped and unable to tell their carers that he can’t tell the difference between the red and green corners of his simple encoding board. I was horrified at that thought and immediately contacted Scope.  I am delighted to say that this guidance on CVD is now available on the Scope website.

Please contact Colour Blind Awareness if you have any queries and we will do our utmost to support you.