Tag Archives: disability

Lesley’s story: My day centre funding is under threat

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, tellsPicture of Lesley 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.

Without it, she and Jan would feel very alone.

How do you use your social care? Share your stories on Twitter using the hashtag #WhatDoYouDoWithYours and follow other people’s stories.

What is Britain saying about disability? Part 2: emerging alternatives

The game changers

Scope summary of research by Linguistic Landscapes. linguistic logo

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.

Active individuals

  • 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).

And more…

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.

What is Britain saying about disability? Part 1: the dominant story

The game changers

Scope summary of research by Linguistic Landscapes. linguistic logo

With our next campaign we want to work with others to begin shifting attitudes towards disabled people for the better. Recognising the power of language and its influence on how people think and act, we wanted to build a comprehensive picture of how people – both disabled and non-disabled – are talking around disability.

As well as our research into public attitudes towards disabled people, we worked with Linguistic Landscapes (who have previously partnered with organisations including Oxfam GB, Prostate Cancer UK, the NHS and various companies) on a ‘discourse analysis’ – basically an analysis of how people talk and write about disability. They analysed over 500 texts from 2010 to now across the media, companies providing disability services, disability charities (including Scope) and campaigners, the Government, blogs, social media and elsewhere on the internet.

In this first summary of their research, it shows there is a dominant way of talking about disability that’s entrenched in Britain today. The main narrative that’s out there – accidentally or intentionally – says that disabled people are seen as passive, homogenous not individuals, separate from ‘normal’ society, hopeless and voiceless.

Passive

      • Things happen to disabled people by others. Movement is a common metaphor and also disabled people being described as recipients: “changes to social security aren’t helping disabled people, they are pushing them into poverty” ; “how on earth they had justified throwing disabled children to the wolves”
      • Many tend to talk about rather than to disabled people:
        “they/them” not “you”
        “more than 100,000 disabled people are or risk soon being denied vital care and support”
        The voices of disabled people themselves are less evident in the mainstream than voices speaking about disabled people.
      • Where disabled people do themselves speak, there is often limited visibility of their impairment
        Disabled people’s voices appear mainly in writing, on the radio and only more recently on TV. This is partly why Paralympics was so radical by showing disabled people visibly and prominently.

‘Other’: separate or different from the mainstream 

      • Disabled people are often put with other marginalised groups
        “Sick and disabled”, “Old and disabled”, “The poor and disabled”, “Women, children and disabled people”, “BME, women and disabled (students)”.
      • This powerfully sustains an invisible norm that’s taken for granted, the ‘normal’ are the able-bodied, the unimpaired, men, straight people, white people, the non-poor etc.
      • Disabled people are overwhelmingly featured as the exception
        “Those with a disability are twice as likely to live below the poverty line – and more likely to be victims of crime”
        “Disabled people are more likely than non-disabled people to experience material deprivation”
      • Common metaphors of war and survival reinforce the sense of difference
        “parents battling for support”, “barely surviving”, “war on welfare”

 Homogenous: a mass group 

      • Stripping away people’s individuality – when terms like “disabled people” are used a lot, the person is defined only by their disability and they can lose individual characteristics , even as to whether the disabled person is an adult or child. There is very little about important aspects of pleasure, like humour, relationships and sex.
      • Stories of individuals are powerful but unfortunately too often these are negative, e.g. individual ‘benefit scrounger’ stories. These have particular power when people have little understanding of the wider group of ‘disabled people’. 

Work and individual responsibility: a massive topic

      • Not working is immoral – A recent and now major context for many conversations related to disability is work, for example in politics and the media. It is a moral discourse where you are only valuable – and ‘normal’ – if you are in employment.
      • The ‘benefit scrounger’ narrative fits within this, where being passive (not working) combines with being separate (different from the majority of hardworking people), combines with individual stories.

Some of the other findings showed that disabled people are often described as special and vulnerable, in an inevitably negative situation and permanently disabled with little understanding of the nuance of people’s impairments.

What do you think? And what are the alternatives?

The end result of the language we all use isn’t necessarily intended – often it can just be unthinking.  Because there is such an established way of talking about disabled people, most people won’t question it most of the time. But seeing it laid out here sparks thinking: is this the picture we want to paint or a different one?

Please comment below or tweet with the hashtag #ScopeGameChangers.  

We have now published the second part of our findings – some of the alternatives to the dominant narrative and hope for change. Let us know what you think.

A year after the Paralympics, are disabled people still invisible?

BBC News have created a short video asking if attitudes towards disabled people have changed since the Paralympics:

“In London in the summer of 2012, disabled people were suddenly in the spotlight during the Paralympics. But a year on, have they gone back to being invisible?”

Watch the video on the BBC News website

The video features comedian Francesca Martinez, we spoke to Francesca last year about attitudes towards disabled people and how she uses comedy as a platform for change:

Getting weird…with Jonah Sachs

The game changers

jonah sachsJonah Sachs is the CEO and Co-founder of Free Range Studios. He is an internationally recognised storyteller, designer and entrepreneur. He is also the author of the best-selling book, Winning the Story Wars.

First, let me say this open process is how campaigning should be done. Non-profit campaigns need to break expectations of their audiences if they are really going to change anything and get beyond the choir. That’s terribly hard to do for a group of people that knows an issue well, believes passionately in it and usually speaks to others who agree. Taking this beyond your four walls, getting weird ideas and testing will change everything.

So let me get weird right away and say that the “disability brand” is broken. And it has the opposite problem that most traditional product brands have. With a product, you usually have something inherently unemotional, unheroic and low stakes that you have to puff up and add meaning and connection to. In the case of disabled people, it’s the opposite. People naturally root for those who have the odds stacked against them but struggle mightily to overcome them. It’s considered the most basic goodness to show compassion and care for others who, through no fault of their own, have to work harder just to get by. Although many of us think disability doesn’t touch our lives, 1 in 7 people is disabled. We all know and love disabled people.

And yet, say the word “disabled” and the images that come to people’s mind will be mixed and muddled – and often invoke a spiteful narrative. That’s the level you need to be working on. The UN Convention will not be the lead. We have to start at the gut emotional level to redefine what comes to mind when you think disabled. Have you seen this video? That’s a new image of the disabled. Not pity and not some flat declaration that this guy has dignity. This is someone that makes us, the audience want to be better through his disability. It’s time for a new story about what disability is and what disabled people and their allies (the other key heroes of this story) can do. This is basic good vs evil. Don’t be afraid to say so.

Groups offering emotional and practical support

This is the first of a series of occasional blogs from the Scope Helpline so we would welcome any suggestions as to what info you would find useful, what you want to know about the Helpline and Scope.

Although we are the national helpline for Scope and the first point of contact for most enquiries, we are quite small. We have two new staff starting in September which will take us up to seven staff and we deal with an average of 1,200 phone calls and 400 email/website enquiries per month.

The Helpline is central to information production within Scope so if there is a disability-related issue that you feel we should have further information on, please let us know. We cannot promise but all sensible suggestions will be considered.

We have noticed an increase in the number of people looking for emotional and practical support from people in similar situations. It’s not just adults – many disabled teenagers who are struggling to come to terms with their impairment, feel that they could benefit from a mentoring or befriending service and being in touch with disabled role models. At Scope we have a number of exciting peer support projects that people can get involved with:

  • For parents of disabled children we run a network of support groups called Face 2 Face.
  • Young disabled people between 10 and 18 years old can join the Trendsetter’s group.
  • Over 50s in Wakefield can join the Our Generation service that offers one-to-one support for disabled people and people with long-term health conditions.
  • Everyone can get involved in the Scope Forum and talk to others online.

We’d love to hear what other peer support projects you would recommend, and let us know what areas you would like to see us talk about using the comments section below.

Have the Paralympics improved the daily lives of disabled people?

To mark the anniversary of the Paralympics we wanted to know if disabled people thought London 2012 has improved their lives.

Lord Coe says legacy is a ten year task, but this is a useful point to ask how things are going.

In July the Government argued that the “Games improved attitudes to disability and provided new opportunities for disabled people to participate in society”.

Two well-known former Paralympians – Ade Adepitan and Baroness Tanni Grey-Thompson – have recently had their say.

But the views of ordinary disabled people are missing from the debate.

Over the last month we’ve been gathering their comments and opinions – through a poll of a thousand disabled people, through social media and also by looking at what they’ve been telling Scope recently about their lives in 2013.

We think this provides pretty compelling evidence that the Paralympics Legacy hangs in the balance.

There’s lots of ways to tackle the issue of legacy.

But we thought we’d take as our starting point, what the Government said it was hoping for: a change in attitudes and improvements participation in sport and community engagement.

We review these ambitions below and also on the Scope blog publish a collection of quotes and comments from the disabled people we spoke to.

Changing attitudes

Disabled people feel strongly that what’s said publicly is crucial in shaping attitudes. Behind this is the shocking fact that 90% of Britons have never had a disabled person in their house for a social occasion.

So it’s no surprise that disabled people, charities and the Government all saw the Paralympics as an opportunity improve hardening attitudes.

And – in the short term at least – most people think it did just that.

Surveys in the aftermath of the games pointed to an improvement in public attitudes. Lord Coe declared that ‘we’d never view disability in the same way’.

Scope’s new poll backs this up. Some 70% of disabled people think that the coverage of the Paralympic games had a positive effect on public perceptions.

Scope’s chair Alice Maynard describes the Paralympics as “a breakthrough moment”. She says: “Disabled people had never been so visible. Disability had never been talked about so openly”

But where are we one year on?

Recent Government figures show that over half of a sample of the public (regardless of whether they are disabled or not) said the Paralympics gave them a positive view of disability.

There have been moments when – like in 2012 – positive disabled role models have had a high profile in the media. Channel 4 brought back the Last Leg. Comedian Francesca Martinez hailed comedy as the new Paralympics following disabled comedian Jack Carroll star-turn on Britain’s Got Talent.

British double leg amputee and Paralympic Gold medalist, Richard Whitehead, is running a marathon a day this summer from John O’Groats to Land’s End.

But our new poll suggests that despite all this, disabled people remain concerned by public attitudes to disability.

81% of disabled people say that attitudes towards them haven’t improved in the last twelve months – with 22% saying that things have actually got worse.

Of the respondents who have experienced a decline in people’s attitudes over the past year, 84% think media coverage of benefit claims and the welfare system has had a negative effect on public attitudes.

That last point is crucial.

Despite welfare fraud being 0.7% of the benefits budget, the Government regularly contrasts the hard working person gets up early for work, to his benefits claiming neighbour’s whose blinds are pulled.

Cabinet members have had their wrists slipped for misusing welfare statistics. But people continue to think benefit fraud is worse than it is.

Tanni Grey-Thompson recently summed up the impact of the myth that most people who claim benefits are scroungers: “I’ve lost track of the number of letters from disabled people who have been spat at in the street…One letter I received described how a disabled person was in a bus queue and someone came up and started asking them how many thousands in benefits they were costing.”

The Government’s own analysis of 2012 legacy raises this as an issue. Against this back drop, it says: “How long the uplift in public attitudes will last is more questionable”.

That’s why Scope is using the anniversary to call on the Government to halt the scrounger rhetoric once and for all.

Participating in sport and engaging in the community

One important fact first: the 2012 had a huge impact on Paralympics sport. As the head of the British Paralympics Association recently underlined, its profile and its funding are both greatly improved. Paralympians go to Rio with huge confidence.

But for ordinary disabled people the jury’s out.

The Government says “Participation in sport and recreational activity by disabled people increased by 4.2 percentage points in 2012 from 2005/06”.

Sport England says 362,000 more disabled people now play sport than in 2005, but it is estimated that only 18% of disabled adults undertake physical activity for more than 30 minutes a week, and those with impairments are still around half as likely to be active than their able-bodied counterparts.

This is echoed in Scope’s poll, which reveals only 10% felt that the Paralympics had inspired them to take up a new sport or re-visit a sport they once did.

Meanwhile when it comes to volunteering, the Government says: “The Games also opened up a range of volunteering, cultural and sporting opportunities for disabled people that did not exist before. Participation in volunteering by disabled people increased year-on-year to 2012, compared to 2005/06, and 4% of Games Maker volunteers had a disability.

But Research by Disability Rights UK and Community Service Volunteers has found evidence that many people with disabilities are experiencing a surprising level of difficulty in finding volunteering roles.

As Baroness Tanni Grey-Thompson said recently: “If you can’t get out of bed or get washed in the morning, then you can’t change the way people think, you can’t take part in sport and you are not going to be involved in the community.”

Disabled people have three big challenges before they even get to the sports club or volunteering centre: getting the basic support from their council, getting about and paying the bills.

Getting the basic support

Disabled people rely on support from their councils to get up, get dressed, get washed and get out of the house.

But councils have been upping the bar for eligibility, with 83 per cent of councils now setting the threshold at a higher level. According to London School of Economics 69,000 disabled people have been pushed out of the system. Support for those in the system is being squeezed. A Scope survey found almost 40 per cent of disabled people who continue to receive social care support are not having their basic needs.

Angela from Luton talks about the impact this has on her.

The Government recently committed to investing £3.8bn in social care and its Care Bill reforms are introducing a cap on costs and national eligibility to end the postcode lottery in care.  But the Government has also said the plans will set as standard the higher level that most councils have moved to. According to the London School of Economics (LSE) this will leave 105,000 disabled people outside of the system.

Paying the bills

Life becomes more expensive if you’re disabled and you’re more likely to be on a low income if you are disabled. Living costs are spiraling and income is flatlining for everyone. But recent research showed just how tough things are for disabled people.

One in ten disabled people have used doorstep loans, compared to just 3% of the general population. Fifteen per cent of disabled people – over double the rate for the public (7%) – use loans to make ends meet.

Here’s Susan from Ealing talking about her financial predicament.

What’s the Government’s response to the financial crisis facing disabled people? It is taking away £28bn of financial support, sticking with both the broken system for deciding if disabled people are entitled to out-of-work support and the discredited Work Programme, which has spectacularly failed to support disabled people into work.

Accessibility

There was an ambition for the 2012 Games to be the ‘most accessible ever’ and TFL in particular took measures to improve accessibility. But in 2013 it remains a fact that 66 of the 270 Tube stations are step-free. ONS data shows that nearly half disabled people have had issues access leisure activities.

Scope polling suggests the real issue when it comes to accessibility people’s willingness to do something different or be flexible to accommodate a disabled person. Last summer 76% of disabled people told us they have experienced people refusing to make adjustments or do things differently. We regularly hear from disabled people who talk about this issue. Buses don’t stop. You’re not let into a club or bar because you ‘look drunk’.

As Scope’s Tom Hall recently told Marketing Week, disabled people and their families represent 20 million potential customers. Both local businesses and big brands should be doing so much more to tap into the £80bn purple pound.

Crafting our way to change

On Tuesday night, as rain was falling across London, there was a quiet revolution going on in a cafe near Kings Cross. Amid china teacups and origami cranes suspended from the ceiling, vintage furniture was gradually getting covered in paper, glue and sparkly pompoms.

The London cafe Drink Shop Do is used to being a hub of creative activity, with evenings that range from biscuit decorating to Lego building. But on Tuesday evening, craft was in the name of social care.

The Britain Cares campaign, which has already seen support from over 27,000 people, is calling on the Government to ensure that 100,000 disabled people receive essential social care support to live their lives. Under current Government plans, they’ll be denied it.

This is why a group of crafters, varying in experience, gathered to prove to politicians that not only are the current plans unjust, but that people in Britain really care about the issue. And they intend to prove it…with pompom-embellished socks. The 25+ crafters who met on Tuesday, marking the beginning of Britain Cares: Britain Crafts week, spent their evening adding ‘I care’ messages to socks, soaps, coasters and even tote bags.

Craftivists with 'I Care' tote bag made as part of Britain Cares: Britain Crafts

As you can see from the photos, their creativity was limitless – and this is exactly what is needed to catch the attention of MPs, with meaningful messages that people have spent time creating, calling on them to really think about the issue, and take action.

Using craft for activism may be increasingly popular, but it’s not new.

If you’re not familiar with crafty activism, or ‘craftivism’ here’s the lowdown:

What is it?

Betsy Greer coined the term ‘Craftivism’ as:

“A way at looking at life where voicing opinions through creativity makes your voice stronger, your compassion deeper and your quest for justice more infinite.”

The Craftivist Collective point out that craft + activism = craftivism, and they aim to show that ‘making people aware of the injustices and poverty in the world can be joyful as well as empowering and fulfilling.’

Why would I do it?

Craftivists say that as a campaigning method, it can be very satisfying. Making time to think about the issue is always refreshing, and craft encourages you to really consider your message.

It’s great that online activism has allowed us to campaign at the click of a button, but it can be overwhelming if you’re actually asked, ‘Why does this issue matter to you?’ Pause. In that frame of mind, when swiftly sending a pre-prepared email, it can be difficult to stop and really think about why what you’re doing matters. For me, craftivism is the self-initiated ‘pause’.

But isn’t this urgent?

Like many steps out of the ordinary, it can feel counter-intuitive:

‘Quick! There’s a crisis going on! We must shout loudly!’

Using craft doesn’t take away the urgency – it allows you to contemplate why the issue is so urgent and consider the most powerful and meaningful way to make change. It puts the power back in the hands of the campaigner – quite literally. Sometimes sitting and thinking about how we could create something that really gets across why we feel a certain way can be the most empowering way to use our voices.

Time is important

It doesn’t mean we can rest on our laurels. Timing of action is always important. But actually, the time it takes to make something is part of the process.

Time is our most democratic and precious resource, and should be valued by those on the receiving end. By investing my time in something I really care about, I hope my MP will respect the action all the more, and feel that he is also valued as my representative.

I’m not sure my MP will really be convinced by craft

With all campaigning we have to ask what will have an impact. Scope already knows that delivering messages creatively can make an impression. As part of our Keep Us Close campaign, MPs received hundreds of wish stars and family memories, making them realise how significant the issue was.

Giving something as an ongoing reminder is personal and long-lasting. One MP told us, ‘The wish stars now have pride of place in my office in Westminster’.

Britain Crafts

So when an MP receives an ‘I care’ sock or soap this week, they’ll be reminded of the 4 in 10 disabled people who receive social care support that does not meet their basic needs like washing or dressing. And each time they have a cup of tea and replace their mug on a coaster made by one of their constituents, they will be reminded of how this issue is important to that constituent – and that they have asked them to take action on their behalf.

This weekend, could you make sure your MP knows how much you care about social care? By spending half an hour creating a message, you can enjoy the benefits of crafting, really thinking about the issue AND proving to your MP that you really care about social care – and that you’re not going to stop at an email.

Everyone’s getting involved. Even the cast of Downton Abbey!

Ema, who is disabled and struggling to live the life she wants to lead without social care, is making a pencil case for her MP with ‘I Care’ beading. In her film she talks more about living what she describes as ‘a half-life’. As Ema says, ‘social care is worth fighting for’ and if that means decorating hundreds of bars of soap, we’re up for the challenge.

Writing 'I Care' on a card with soap nearby

Are you limited by your challenges or are you challenging your limits?

When Team Scope member Mike Jones contacted our events team and told us he is taking part in the Ironman Sweden at Kalmar in August for Scope, we were blown away by his determination. Over the last two years he has attempted Ironman Wales but has been unsuccessful – any competitor will tell you that the exhausting event will bring out your weaknesses and for Mike it did just that. 

After enduring foot pain throughout the event, and following discussions with his GP, Mike was referred to a Neuromuscular Consultant who confirmed a long-standing problem that has been masked since child-hood, only materialising in his early 50’s. Mike has kept his own blog over the past few months as he trains for the event whilst searching for a firm diagnosis of his condition – he has recently had tests for Cerebral Palsy and Charcot-Marie-Tooth disease – but here is an extract from his most recent post as he reflects on his latest endurance events.

From LLanelli to Eton, Nottingham to Port Talbot

I think my theme for the last few weeks must be “Another Town, Another Train(ing) race”. This has seen me travel from Llanelli to Eton, Nottingham to Port Talbot to take part in three endurance events in 13 days, some would say “burning my bridges” but it was something I needed to do. The first of the three was at Eton Dorney, this was for the Human Race Open Water Swim Series, the 10K swim. Looking back I was so glad that my open water training had started two months ago in North Dock, as even I would admit on the day it was cold.

Mike Jones

A six day turn around and it was off to Nottingham for the inaugural Outlaw Half, a Middle Distance Tri based in and around the National Watersports Centre at Holme Pierrepont. There were a few areas of my preparations that I wished to try out ready for Kalmar. So time was not a goal for the day, completion yes. The swim, which was a simple loop, went without a hitch. The bike leg went as expected and again the plan was to pace myself and not get carried away with speed / time if I was feeling good. The course was good, not flat but with only one part that could be classed as a hill. So on to the half marathon, well what can I say –  it started off well! However after about four miles the problems with pain in my feet returned so it was in to the familiar survival mode to ensure completion, which has been the normal now for a few events. This continuous stopping was (is) causing problems with me getting into any sort of rhythm. The positive is that I now know something about the medical condition that is causing this problem, so all I need to work out is a plan of action for future events.

A potential solution

One consideration is to change the way in which I tie up my laces, at present the use of elastic laces with my Pes Cavus feels that I am wearing an elastic band around my feet so not getting any relief. It was due to the number of times I was taking my shoes off to rub my feet that this style of laces where introduced, so going to replace with normal laces using a non-traditional method to lace up. Also what I am now considering is instead of pushing on until the foot pain becomes a problem is to build into my run plan stops to self-massage my feet before it gets to the unbearable pain level, this may mean a short stop at regular intervals no matter how I am feeling.

The Future

At present I am still confused over the results of the medical tests over the last few months, as all I am getting is the observations from these tests. What is confusing me is there is no definitive condition being diagnosed other than a “Neuromuscular Condition” which is long-standing – this term is so general it seems someone is afraid to put a tag on the condition. So the saga of “Atrophy of the Thoracic Spinal Cord” along with “Upper Motor Neurone” signs goes on and on and on. The wait for further appointments continues and it feels at present a race against time for me to plan for the future, but as the mantra goes “you’re never a loser until you quit trying”, and guess what my plan is. It is at this point I start wondering what and where the months will take me – I have a dream.

With little over 4 weeks to go Mike is clearly determined to take part in the event and give it all he can, firmly following the Ironman’s mantra “Anything is Possible.” We wish him all the best as he is also fundraising and running for Scope in the Great North Run this September.

If you’ve been tempted to take part in a triathlon or endurance event then make sure you check out what we have to offer.

They made it to the Eiffel Tower!

Last week we introduced you to Gethin and Nikki who were courageously taking on our London to Paris 24 2013 challenge. Here are Gethin’s thoughts as they begin to recover from cycling 280 miles of tarmac.

Not really sure how to start this blog. Even four days after finishing London to Paris in 24 hours, my head is still a jumble of emotions but here goes…

Gethin and Nikki at the start
“Challenges that disabled people face, even after all the positive publicity from last year’s Paralympics, still shocked me”

Before the start at Blackheath, one of the Scope trustees, Rachael Wallach, gave a great speech about the work Scope is doing and what the £300k (and counting) we raised is going to be used for. Despite having been involved with Scope for a few years now, what she was saying about the challenges that disabled people face, even after all the positive publicity from last year’s Paralympics, still shocked me.

One particular thing Rachael said stayed in my head through the ride and will do for a long time to come: “when you’re struggling on the bike, think of the people who are struggling with disabilities every day of their lives”. That’s a very powerful motivator when you’re close to your limit on an event like this.

What’s London to Paris 24 really like?

I’ve tried lots of different ways to describe what it’s like to ride L2P24 then I saw Pete Mitchelmore had come up with this gem on the ride’s Facebook forum:

  • “L2P24 riders in Dinner suits! Wow, respect!”
  • “I think it’s getting hotter”
  • “How many traffic lights”
  • “This food is great!”
  • “Urggh this hill out of Folkstone is tough, oh look the photographer!”
  • “Where is the ferry, we’re getting cold!”
  • “Ferry docked”
  • “Wow it’s dark here”
  • “It’s even darker here!”
  • “I think I’m on a hill but can’t see it”
  • “Crazy French cycling supporters out at 2:00am!”
  • “aaah sunrise”
  • “More great food!”
  • “Getting hotter”
  • “How many hills?”
  • “These roundabouts all look the same”
  • “Didn’t we pass those wind turbines an hour ago?”
  • “Hot”
  • “OMG Champs Elysees insanity!”
  • “Finish – did it!”
  • “Need beer”
  • End 🙂

The adrenaline rush from taking your life into your own hands on the roundabout around the Arc Du Triomphe is something else. Spot a gap…Deep breath…Nail it as hard as you can…Pray…then hit the jarring cobbles of the Champs….

Fancy dress anyone?

l2p24 suits
The two nutters in Dinner Suits

When you do a ride like this you pray for good weather. For most of the year we’ve trained in the cold, wet and wind – so 35C temperatures came as a bit of a culture shock. A few people really suffered with dehydration but most people survived to the end, even the two nutters in Dinner Suits from the PwC team.

When you get out on the road it’s your fellow riders that make it special – and it was no surprise that the L2P24 “Class of 2013” were a cracking bunch. People you’ve never met before suddenly become your new best mates as you ride with them, having a chat, sharing the work whilst burning through the miles to Paris. If someone needs some help, roadside assistance, food or equipment from another rider it’s done without question. Another rider even chased me down for a mile on Stage 3 as he saw I’d missed a turning. I never saw him after that (think it was Charles – rider 175) – but thank you, that was well above and beyond the call of duty.

Enough fuel in the tank for another year?

Will I be back? Almost certainly. Having ridden relay twice now, I have unfinished business with riding the whole thing. Will it be next year? Almost certainly not 🙂

Finally, there are a lot of people we need to thank for helping us through this:

  • Our friends & family, who sponsor and support us through hard months of training.
  • Scope and Action Challenge for putting on an event that must be a logistical nightmare to organise, then show up on the day and are enthusiastic, smiling and encouraging for 36 hours. Nothing is too much trouble for them.
  • All of the support crews – medical, catering, logistics and mechanical. An unsung job, but always there in the background when you need them and vitally important.
  • Most of all, the riders. I touched on this above but the camaraderie on the road is very special.

I said in my previous blog that I wanted a picture with Nikki by the Eiffel Tower as it meant she would have made it to Paris. I’ve done this kind of thing before but this was her first endurance cycling event. I’m so proud of what she pushed herself through this year to make it to the finish line. Here is the photo to prove it:

Gethin and NikkiCould you cycle from London to Paris in 24 hours?