We would like to start getting some initial feedback from people interested in campaigning to help us develop them further. We need to do this in person (we can’t release ideas online on the Game Changers yet) as it’s early stages and needs to be explained in person.
We are running a group to get this feedback soon, probably during the week beginning the 9 December and would love to invite members of the Game Changers community to participate.
We can’t guarantee that there will be room for everybody, but if you would like to get involved in helping to shape the creative aspect of the campaign, simply email us at firstname.lastname@example.org with your name, age, whereabouts in the country you are from and a couple of lines about your interest in campaigning and why you would like to be involved in the focus group.
We’re pretty tight on time, so please drop me a line before Friday 6 December to be considered.
John Coventry is the UK Communications Director at Change.org
At Change.org we have a unique position within campaigning: we are curators of content, working with our users to bring the real human side of some of the UK’s most pressing issues to life. This presents both the platform and our users with incredible opportunities to create high impact, quick turnaround change; it also means we are in the privileged position of telling powerful and moving stories that build compelling movements.
I would love to see Scope becoming a platform for the people it works with: to provide a base of expertise and support but to let the powerful stories of service users and partners come to the fore.
Now more than ever people from all backgrounds and with a wide range of impairments can have a voice and individuals can campaign with the power of organisations. Scope has a fantastic opportunity to bring a wide range of people into debates – going beyond “case studies” to a point where disabled people are at the very forefront of the agenda-setting work that Scope does. It is not enough to advocate for people. It’s time to work with people to help them find their voice and give them access to those in power: your campaigns will be more powerful for it; the victories more credible and the impact of society at large more profound. It will inspire a new generation of campaigners.
There is a tendency within organisations to worry about two things: Campaign messaging and brand profile – often this hits your ability to work in an agile and disruptive way. But a young woman speaking from the heart about her experiences will do more for public engagement with your issue than a 60 page branded policy report and potentially have a bigger impact. With platform campaigning, it’s about making the conditions right for change. So be clear on the asks and the policy work that’s happening behind the scenes, then let the people who really matter go out and make the difference.
Disability History Month begins this week. Recently a fantastic and timely BBC documentary charted some of the big milestones in the struggle for independent living.
It’s clear society’s attitudes to disability have come a long, long way.
But it wouldn’t have happened had disabled people, like Paul Hunt, who led a care home revolt and became one of the Movement’s founding fathers, not looked around and said “this isn’t good enough”.
It’s got me wondering if this month could go down in disability history.
Hear me out…
Columnist Frances Ryan recently did a great job of summing up what life is like if you’re disabled in 2013. For too many people it’s a real struggle to live independently.
But could November 2013 go down as the month when we once again made our voices
At the beginning of the month five disabled activists waited nervously outside the court of appeal for the outcome of their challenge to the way the Government has gone about closing the Independent Living Fund. They won.
Following on from Labour’s promise to scrap the bedroom tax and news that the Government have had to slow down the roll-out of personal independence payment, have we hit a point when it’s dawning on the public that with living costs spiralling and incomes dropping that the answer to disabled people’s living standards crisis isn’t to take away financial support?
Disabled people have for too long sat outside a debate that focused on making sure middle England baby boomers didn’t have to sell their homes to pay for their parents’ care. But again it feels like disabled people are starting to make their voices heard. With disability now a mainstay in the social care debate, could the Government be forced to re-think its plans and genuinely make history by guaranteeing council-funded independent living support for everyone that needs it?
Making sure disabled people can get support is one side of the coin. The other is what that support looks like. Does it genuinely promote independent living?
This is the month that we at Scope tackled this question head on. Again disabled people’s voices have played a big part. For a long time activists have been urging Scope to transform its more old-fashioned residential homes. Not long ago they protested outside our offices.
This month we begin work on proposals to close or significantly change 11 care homes. It’s the right thing to do. But we also need to do it the right way, which means making sure disabled people who live in these homes have choice and control over where they live in the future. I don’t think we’ve done anything radical. But hopefully we’ve given the sector a bit of a jolt.
The message for Disability History Month 2013 is ‘Celebrating our struggle for independent living: no return to institutions or isolation’. Let’s remember some big milestones. Let’s not forget that we have a long way to go. But let’s be optimistic – disabled people continue to speak out and continue to make society think differently.
Over the years, Shirley Butler, 78, has raised over £24,000 for us by taking part in our challenge treks. Her travels for Scope have taken her to Cambodia, The Grand Canyon, Vietnam and climbing Mount Kilimanjaro – to name just a few.
This September, she joined a group of committed trekkers venturing in to the Sumatran Jungle. Here is the story of her amazing journey.
The start of the adventure
If you want a great adventure then take up a Scope challenge. It was absolutely amazing! I will never forget my journey through the Sumatran jungle.
We flew from Heathrow to Kuala Lumpur, then on to Medan, the capital of Sumatra. We eventually arrived at the beautiful Eco Lodge in the village of Bukit Lawang. “Gunung” means mountain, “Bukit” means hill, “Llawing” means door – Bukit Lawang means “The hill which is the gateway to the mountain.” Nice eh!
My room in the Eco Lodge had a bed covered with a mosquito net. A ceiling fan and a dressing table added a touch of luxury. Every morning we were woken by the sound of monkeys running across the roof throwing fruit at each other.
Our trek into the jungle was one of the many highlights. The jungle is dense, dangerous and hot.
Indonesia has the largest flower on earth. It has a strong odour of decaying flesh and because of this it is nicknamed the ‘Corpse Flower’. We were introduced to another fruit called the durian. “It smells like hell but tastes like heaven” one local told us. Taxi drivers have been known to ask people to leave their vehicles because of the overpowering smell!
We saw great orangutans, Thomas leaf monkeys and hornbills. Our guide pointed out a particularly big orangutan by the name of Ucok Baba. Ucok had not been seen in the area for over 15 years, but had recently returned to take his place at the head of the pack.
We trekked through the forest gully up to our chests in river water. Then we returned to the village to spend time with our hosts. My escort invited me in to his home to meet his family, and they told me stories over tea and biscuits.
On the final day we all took part in the local tree planting programme. To give something back to this wonderful country was a privilege and a pleasure. A celebration dinner was organised that night with traditional food and music. It was one of the wildest parties I have ever been to. Such fun!
A phenomenal adventure
If I had to sum up the whole of the adventure in to one word it would be “phenomenal”. It was an amazing journey and every day brought something different. To have been part of this – and to have had the opportunity to raise money for Scope – I felt like the most privileged person to have ever walked this planet.
Shirley couldn’t stay away for long. She’s already signed up for Trek Burma next year!
Trendsetters is a project run by Scope for young disabled people.
Anti-Bullying Week calls on children and young people to take the lead in creating a future without bullying – using new technology to promote positive communication rather than being held back by cyber bullying.
Bullying is something that many of Scope’s Trendsetters, a group of disabled young people, say they’ve experienced.
We ran a workshop with the group about bullying this summer.
Bullying causes bad feelings. We threw these into a bin.
One Trendsetter wanted to use technology to share her experience of being bullied. She wanted to send out a positive message about stopping bullying by creating this short film on bullying.
Her message is: “If you are being bullied, or know someone who is, tell someone.”
Do you need someone to talk to?
ChildLine – 0800 11 11
ChildLine is a free, confidential support service. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.
BeatBullying online help
Guest post from Nick Duquemin, Stories Assistant at Scope.
I spend a lot of my time interviewing disabled people and their families. Many use council-funded social care, and almost everyone I’ve met is worried about how cuts to services and funding are going to affect them.
When I arrive at Lesley’s home one Monday afternoon, her mum, Jan, tells me she isn’t home yet. Routine is very important for Lesley, 45, who has Down’s syndrome, and she couldn’t bear to miss a moment at the Goldhay Arts day centre in Peterborough.
Lesley’s been going to the centre five days a week for the whole of her adult life. She chose it because she loves to act, dance and do art, and it is her main source of social contact. She has friends there whom she has known for two decades.
Jan holds down two part-time jobs, which she fits around her daughter’s needs. Lesley gets frightened if she is left alone in the house for too long. Without day care, Jan would be unable to work.
But Lesley and Jan fear they will soon lose this lifeline. Peterborough City Council, which funds Lesley’s day care, currently supports people, like Lesley, whose needs have been assessed as ‘moderate’.
Now it plans to raise that threshold to a higher level, ‘substantial’, which means that only those with more urgent care needs will receive funding.
Lesley and her mum are worried she will lose her place at Goldhay Arts if she is reassessed as being of moderate need.
Jan has had to fight on countless occasions to make sure Lesley gets the care she needs, but she is dreading this latest battle. Worst of all is the uncertainty.
“You seem to hear a different thing every time you ask,” she says. “It could be that next week we get a letter saying she hasn’t got a place.”
Lesley arrives home and proudly shows me pictures of her family, including her dad and her stepdad, both of whom have passed away.
Then she brings down more photographs from upstairs – this time of herself, dressed up at the arts centre’s summer ball and performing in talent contests on holiday. Jan stresses that Lesley’s confidence comes from her time at day care, and Lesley agrees.
“All my friends would miss me if I’m not there, and I can’t make new friends. I’ve got lots of friends at Goldhay Arts; I’ve known some of them for 18 years,” she says.
I’d be bored, I hate staying in. I’d be sad – a lot. I’d be scared if anything goes wrong, because I love that place.”
Lesley’s day care gives her a link to the outside world, and it means she can live her life as she chooses.
For the past few months I have been writing blog posts to showcase the amazing grit and determination of our event participants as they’ve supported Scope by taking on marathons, triathlons and extreme bike rides.
Now it’s time to turn the spotlight on myself. I want to tell you about my personal running experience; the highs, the lows, and my motivation to pick up a pair of trainers again. The quote in the title is from Paul Tergat, a Kenyan professional marathon runner. I’ve found myself relating to him a lot recently!
Back in April I made a promise to our director of fundraising, Alan Gosschalk, that at some point this event season I would get involved in a Scope challenge event. It’s almost a rite of passage in the events team.
Conveniently for me, my pledge went forgotten for some time. That was until we met our Ironman UK participants in Bolton in August. I told them it would be a walk in the park and that they would enjoy the whole experience – which made me feel like a total fraud!
I remembered my promise and decided it was time to stick to my word. That evening I signed up for my first ever 5K run.
These shoes were made for running…
I begun my training routine in earnest using the NHS couch to 5K training plan. I had seven weeks to make sure I would get round the course without stopping.
I decided to invest in a decent pair of running trainers after having gait analysis at a top running shop. Gait analysis is a system where the motion of your feet is analysed to make sure your get the correct footwear. This involves running on a treadmill at three different speeds whilst a staff member watches the angle of your feet.
I managed the 5K distance in training, and was aiming to improve my speed. But two days before my run disaster struck! On my last training run, I couldn’t even complete 500 metres. My shins were in agony. I hobbled home in tears, upset that my weeks of hard work had come to this.
But after talking to my brother – who was doing the run with me – I was determined to carry on. I thought the pain was caused by shin splints, pain and swelling in the lower legs as a result of my body not being used to running.
On the day I turned up to Leeds Castle near Maidstone in Kent ready to give it my all. I hadn’t done my research on the course and was shocked when I was faced with a cross-country, hilly route. I had only trained on the roads in suburban London!
There was no time to worry about that though. The klaxon went and my adrenaline kicked in. Thankfully, my brother stayed with me the whole way, chatting to me non-stop and helping to keep my mind off the pain.
We crossed the finish line in exactly 37 minutes and I was thrilled! It took a good 48 hours to wipe the huge smile from my face and I was incredibly proud that I had actually done it, bursting into tears of exhilaration.
It may not be the quickest time but I know that my efforts in training and fundraising would make a big difference to the cause I was supporting.
Eight and a half weeks ago I couldn’t run the 200m from my house to the top of the road and I’m more determined than ever not to get in that state again. My doctor confirmed that the pain in my legs is shin splints so I have three weeks off from running, dancing or jumping to recover.
But I will be back to running as soon as I can. I know 5km is not the longest of distances but for me it was a big personal challenge that I managed to overcome.
My brother and I are already looking to do another 5K before Christmas. My aim for 2014 is to get a minute a month off my 5K time by pushing myself like Paul Tergat. When I can comfortably do a 30 minute 5K I will increase my distance and go for 10K. Watch this space!
Scope summary of research by Linguistic Landscapes.
As we seek to shift attitudes with our next campaign, we recognise how important language is. We recently released the first part of some research into discourse: what people are saying about disability in Britain today, including disabled and non-disabled people, online communities, the media, Government, charities, campaigners and others.
Below are some of the emerging alternative discourses – other ways of speaking and thinking that could be built on. These include individuals actively speaking out for themselves, people breaking down barriers respectfully, making disability more ‘normal’ through the power of popular culture – and more.
Angry, active dissent
Some disabled campaigning groups explicitly take on and challenge the language of the dominant discourse. By doing this they expand what it’s possible to say about disability, and also enable more moderate voices to occupy the middle ground. But they can also tend to reinforce difference from the rest of society, whether or not that’s intended.
Overt rejection of ‘care’. Terms like “caring” and “help” do not feature on websites of these campaigning groups, whereas for mainstream charities they are in the top 50 words. Rights feature large instead.
Anger is reframed as positive, fuelling action, for example “We have consistently united in anger and celebration”. Disabled people are described as vocal agents of change.
The raw experience of being disabled is present. There are references to hate crime, harassment, hostility, and these are not sanitised.
Self-mocking, reframing the negative
Some disabled groups or individuals reclaim or mock terms of abuse directed at them e.g. Benefit Scrounging Scum, Diary of a Benefit Scrounger etc. This is a powerful way of reducing the effect of the negative, but ultimately to replace the dominant discourse you need something else too.
Alternative ways of talking about disability
Other alternatives below don’t directly take on the dominant discourse, but they do provide other ways of speaking that could help to shift the way society talks and thinks.
Voices in the first person – individuals telling their own stories, rather than talking about disabled people and as a group.
Active aspirations and hopes – They have hopes not for a non-disabled normality but for ‘normal’ aspirational things. Trailblazers for young people: “be an undercover reporter… make an impact.. become a media star… help build a team …”
It’s okay not to know, it’s okay to ask
It’s possible to create respectful ‘legitimised curiosity’. Instead of disabled people being alien, ‘not knowing’ is changed from disrespect to respectful interest. The Last Leg’s hashtag #isitokto encourages people to discuss what’s OK around disability. The Paralympics explained categorisations of impairments.
The power of popular culture to normalise
Disability appears more normal when featured within another dominant topic.On ladsy late night chat show The Last Leg, disability is just another topic, a recurring one – but recurring just as football, sex or celebrity might be. This approach powerfully ‘normalises’ disability by portraying it subtly. Could we see Gardener’s World or Location, Location, Location include disabled people without comment (as they do for gay people)?
Mixing disabled and non-disabled people is powerful.On The Last Leg the presenters are also a mix, which potentially breaks down the ‘us and them’ (they are all presenters, united in satire).
Other alternative discourses include:
‘Calling out’ the non-disabled, reversing who’s included/excluded and challenging what’s considered normal.
Reversing the assumption that disability can only be a bad thing, e.g. “I celebrate my ‘MS birthday’”, “I celebrate Deaf Day. March 20th marks my entry to deaf life!”
Resisting sharp line between us and them.
Talking about technology and how it enables all of us, disabled and non-disabled people.
What do you think?
We know there’s a lot here, even in this short summary of what was a massive piece of research. How do you think we should be responding as campaigners? What does it mean for Scope and others?
We’d love to hear your thoughts. Please comment below or tweet with the hashtag #ScopeGameChangers.
New figures out today show the scale of the Government’s new sanctions regime. In total, over 90,000 disabled people have had their benefits suspended for anywhere between 3 weeks and 3 years. Here’s four things you need to know:
How many disabled people do sanctions affect?
Since November 2012, when sanctions were tightened, 90,004 disabled people have had their benefits suspended.
This breaks down as 82,860 disabled people on Jobseekers Allowance (JSA) – the out-of-work benefit available to everyone – and 7,180 disabled people on Employment Support Allowance (ESA), which is meant to be for those who face the biggest barriers to work.
This means that 1 in 7 of the total number of JSA claimants who’ve been sanctioned are disabled people, and 4 in 5 of the total number of ESA.
How does this compare to previous years?
It’s hard to say exactly, because DWP haven’t published figures specifically for disabled people before last year.
But looking at the figures for those on ESA – the majority of whom are disabled people – we can get a sense of how many more people are being sanctioned under the new regime. The increase is pretty shocking.
Since December 2012 the number of ESA sanctions was 11,400. For the same period in 2011/12, the number of people sanctioned was 5,750. This is an increase of 50%.
Compare this with an 11% increase for JSA sanctions year on year, and it’s clear that the regime change has had an even more dramatic effect for those who face the most barriers to work.
Why are people being sanctioned?
What the stats show is people being sanctioned for things like missing interviews with advisers, or not engaging with the Work Programme, or sending enough job applications.
What they don’t show is the reality for disabled people: interviews with advisers clashing with medical appointments; inaccessible transport; advisers without specialist understanding of conditions and impairments; a lack of jobs with the flexibility disabled people often need.
Do sanctions work?
No. Disabled people face a wide-range of barriers to work. Lack of available jobs, fewer qualifications and even negative attitudes from some employers can make the workplace daunting.
So simply taking away benefits from a disabled person really doesn’t help – as the Joseph Rowntree Foundation have repeatedly pointed out. In fact, suspending benefits can make things worse: stats from the Trussell Trust show that increasing use of food banks is linked to the tightening of sanctions.
Instead of simply suspending benefits for no reason, we need a system that actually works for disabled people, that supports them to find a job they want, and that takes seriously the barriers they face.
Guest post from Scope fundraiser – and Ironman – Tom Partridge
On 8 September Pembrokeshire played host once again to Ironman Wales. 1,675 athletes from 40 countries took on the strength-sapping course and I was in the group of participants facing the open water sea swim off the coast of Tenby.
Ironman Wales is a 2.4 mile sea swim, a 112 mile bike ride and a marathon all rolled into one. The race has quickly gained a reputation for being one of the most gruelling events in the Ironman calendar.
Ironman had been on my list of things to do for a while. This year I turned 30 and it was time to be good to my word and get on and do it! I figured that while I was putting in the time and training effort, why not raise some money for a great charity, Scope, along the way.
Training was intense, fun, tiring, testing, rewarding, boring, long and at times so brutal. I had to overcome a shoulder injury I’d had earlier in the year. I knew I’d need every bit to help me prepare for the physical and mental challenge of completing the mammoth distance in under 17 hours.
Raising money for Scope was a great motivation and the support and donations that have been generated have been PHENOMENAL. It was an honour to be sponsored, and to give other young people the chance to fulfil their dreams. Not completing was not an option!
A great day
On the day, it could not have gone better for me. The swimming conditions were great and I felt ready after three days of preparing in Tenby.
The swim is always hectic with 1,600 people fighting in the water for the first lap. You only get into the rhythm on the second lap.
Legging it through town to the swim-to-bike transition was epic. People were cheering and I got high fives off supporters. Seeing my friends and family on the route was ace.
Then my weakest section – the bike ride. But the £400 bike I got from eBay did me proud. Painted in my race colours, we flew past the £5,000 bikes with their punctures and troubles.
My aim with the marathon was to keep going slow and to keep injury free. I went at a comfortable pace, waving to the family on each lap and revelling in the amazing support through town. My last lap was tough, but all the cheering sent me down the finishing straight.
So how well did I do?
I managed to complete the whole course in: 12 hours, 52 minutes and 5 secs. This put me in 489th place overall.
I am over the moon with my times and achievements of the day and also the amount of money I have been able to raise in the process.
I have huge amounts of thanks and praise to give to everyone who donated and supported me in reaching the current total, well in excess of £1,400.
In addition, I have to say a huge thanks to my friends and family for their time and patience during this process (especially Jo and Felix) and of course, the supporters and people of Tenby who made the 8th September one of the greatest days of my life so far!
Tom’s hard work and determination has meant that he has already raised more than his fundraising target and you can still sponsor him. He has been keeping a blog of his training and Ironman experiences, and you can look at all his images from the day on his Facebook page. If you’ve put becoming an Ironman on your list of things to do in 2014, we still have places available.