Baron Pierre de Coubertin, considered to be the instigator of the modern Olympic movement, focused on the possibility that athletic competition could promote understanding across cultures. Coubertin’s philosophy was that competing was more important than winning.
L’important dans la vie ce n’est point le triomphe, mais le combat, l’essentiel ce n’est pas d’avoir vaincu mais de s’être bien battu - The important thing in life is not the triumph but the struggle, the essential thing is not to have conquered but to have fought well.
This is completely realised by two brothers, Connor and Cayden Long from Tennessee. Connor is 9 years old and he competes with his younger brother, Cayden, who has cerebral palsy and doesn’t walk or talk.
They compete together in triathlons, not to come first, second or even third….but to come last and celebrate in competing. Take a look, it’s 90 seconds well spent!
With thanks to Russell Howard’s Good News for alerting the British public to Connor and Cayden’s awesomeness.
Those of you who visit here occasionally (I like to pretend that some of you are repeat visitors) will know that I’m often digging around for people who are inspirational. Top of my personal list would probably be my Dad (if you missed it earlier this week his tumour shrank slightly since his last scan so that was great news), at the moment a close second are Ollie and Megan, my cousin’s kids. Their Dad was killed in Afghanistan last month and they’ve decided to try and keep a positive focus for his birthday next month by doing a sponsored silence to raise money for 1 Rifles Swift and Bold appeal – you can show them your support and donate a couple quid if you like over here.
In both those instances I’m impressed by their fortitude, by their attitude to just keep keeping on. Cancer and grief are hellish things to have to deal with, never mind if you’re only a teenager (or not yet a teenager in Megs’ case). But what has this got to do with Karen Darke? Well she is another source of inspiration, in fact arguably one of the most inspirational athletes in the UK at the moment. I first heard about Karen a few years ago, 2008 to be precise, I was squatting up on the speakers ahead of the Do Lectures that I was luckily enough to be attending. One of them was Andy Kirkpatrick and his biog included reference to a trip to El Capitan that he’d made with Karen Darke. You can learn more about Andy here. When I returned home from the Do Lectures one of the first things I did was order Karen’s book If you fall and since then I’ve been following her life from a distance.
Since then, Karen and Andy have continued on their adventures. In 2009 Karen became World Para-Triathlon Champion, Sea-Kayaked in Patagonia, won a Bronze Medal in World Cup Paracycling. The following year she joined Team GB Paracycling Team and she is now British Para-Triathlon Champion and in training for next years Paralympics. The 4 minute film that follows explains better than I can – it’s well worth your time, go watch now
Last week I came across Adam Wishart for the first time – he had produced a documentary about the cost of cancer drugs, you can view the film and read my blogpost about it here. Adam recommended the book he wrote about the history of cancer and his family’s experience of it, you can get the book, 1 in 3 on Amazon here. I devoured it this weekend – not quite finished but have learnt a lot about the history of the disease – alongside an affirmation of my own experience with my Dad’s cancer. Will blog about it once have finished the book and taken some time to reflect.
…then yesterday I turned on the TV to watch Andrew Marr and before turning it off caught sight of the billing for Nicky Campbell’s BBC Big Questions, you can catch it on iplayer here. The programme was debating, amongst other things, the cost of care (immediate and throughout life – medical and social) for babies born at 23 weeks. Today I found the trailer for the programme that you can view here:
I’ll be watching BBC2 at 9pm on Wednesday to see the film. This is an area that is close to my heart – my PhD looked at educational curriculum and provision for profoundly disabled children back in the late 90s – focusing on education in England, Wales and Ireland. Not all babies born at 23 weeks will have a profound disability, but lots of them will and the level of support that these babies will require if they live into childhood or adulthood, is in my opinion, far beyond what most people can comprehend without any prior knowledge or information. These personal challenges sit within a context of increasing demand on services, new challenges in the provision of support, more babies surviving and some with greater disabilities, alongside increased life expectancy for all groups – including people with disabilities. You can read more about the changing demands on adult social care in the Dartington Review on the Future of Adult Social Care published by research in practice for adults.
Watching the BBC Big Questions programme yesterday I was struck by how difficult and emotive a topic this is – there was a consultant of public health representing one side of the debate, and two parents of a baby born at 23 weeks presenting the other, at least that was how it was set up to appear; in actual fact the consultant was making an eloquent argument about the ongoing care and support needs that the NHS does not have resource (or remit) to provide, and the parents were sharing their experience and pride in their daughter’s survival and development. Their apparent frustration at the consultant’s view masked what I think was the connection between them, as I understood it they were all presenting the same argument, if babies born at 23 weeks survive, they are likely to require care and support throughout their lives, and currently this support is not readily available.
The parents believe that the decision about the level of support available to their baby was their’s to make with the medical staff; my sense is that few parents when presented with this discussion would have the emotional or physical reserves to engage with it fully so soon after childbirth, or that few could really understand the potential implications of their choice without impartial information and advice available to them. I’m sure this will be picked up and I’m looking forward to watching on Wednesday and to the inevitable ongoing discussion about how we make decisions about the price of life.
This morning my lovely furry alarm clock, Mogs, decided that I needed to be up at 7am. Any other day this week I’d have pretty much welcomed that but not today, it’s been a bit of a hectic week, I’ve been in Devon and London, been in hospital for myself and then also been in for my Grandad, today I really could have done with a lie in.
However, I’m always looking for a silver lining to my clouds and rather bizarrely I found it this morning in the shape of the #24hrtweetathon that was going on over on twitter. The #24hrtweet was brought to my attention by the lovely @martinhowitt who until this moment I always associated with getting up early (he is one of the few voices regularly found on twitter before 7am) and with eating frogs…in the metaphorical sense. From this day onwards Martin and a number of other fantastic souls, namely @DangerousMkting @cosmicjulie @rokkster @ChrisPenberthy and of course a dog @3daxs will take up the shape of a new mental image for me.
They have all been tweeting for the last 24hours to raise awareness of three local westcountry charities, St Loyes Foundation @stloyes who support people to get into work and become financially and socially independent; Headway Devon @headwaydevon who provide support to children and adults who have acquired a brain injury; and Hospiscare Devon @hospiscare who provide support and care to people at the end of life. The #24hrtweet was organised and run on a rota basis, you can see the fabulous people who deserve to take a bow for organising and bringing people into the mix on the timetable here. I just joined in with some waffle and banter for the past hour, I hadn’t picked up on the fact it was happening before (my bad as I’ve been very loosely engaging with twitter lately – shock horror) but I thought I’d scribble this blog post by way of explanation for anyone in my twitterstream who wonders what it was about…although most of them aren’t likely to surface much before midday
I believe the success of the #24hrtweet will be measured in raised awareness and new followers or contacts. I’m sure they’ve done a great job. For me there is a ripple effect, earlier this year my mate Dan died in Propsect Hospice in Swindon, you can read about our fundraising efforts and a little about his story here. As those of you who read this regularly will also know my Dad is terminally ill with cancer. At the moment Dad is still outwardly fine, he decided not to have any chemo yet this time, had his bloods and scan done this week and will meet his consultant again this week. He has also been referred to the palliative care team at Rowcroft, our local hospice.
So the thing about the #24hrtweet is I probably wont follow these amazing people or the charities they support (I’m trying to keep my follower numbers really low at the mo to cut out information overload) but I will check in on them occasionally and more importantly when the time comes, and my family are making use of the amazing care and support I confidently know that we can rely on from our local hospice I’ll sit there and know I’m not alone. Since I joined twitter (over two years ago) I’ve spent many an hour in hospital or hospices chatting on twitter or thinking about conversations or people I’ve met on twitter. After today there are new people added to that mental map of support and I thank you all.
None of us know when we’re likely to need the support of charities like St Loyes, Headway or Hospiscare but I’m bloody sure that if or when you do you’ll be thankful for the support they provide….and the efforts the #24hrtweeters have made to raising awareness, and hopefully in time funds, to support that is amazing. Thank you all.
This morning I had the absolute pleasure of watching my mate Kate Monaghan appear alongside Mat Fraser on @bbcbreakfast. They were being interviewed about the documentary that Kate produced and Mat starred in, Are you having a laugh? TV and disability #tvdis which will be shown this Friday night at 9pm on BBC2.
You can see Kate and Mat’s breakfast interview on the BBC website. They had the job of talking disability, lets be honest never the most popular topic, which was competing for air time alongside the World Cup, the emergency budget, Wimbledon, @beardyman, Willie Nelson and Trinny and Susannah.
What was fantastic, aside from seeing a friend talk so passionately and competently about her work, was the fact that the BBC gave them seven minutes of coverage. That might not sound a lot but I thought it was a really good interview, Sian and Charlie had obviously watched the programme, or at least seen enough of it to talk meaningfully about it and they obviously really had enjoyed it. Always a bonus.
I loved their interview and I can’t wait to watch the programme, which is on BBC2 at 9pm this Friday. Mat Fraser was an absolute gent, ensuring that Kate was brought into the conversation and his personality shone through. The person he reminded me of most, in terms of self-deferential humour, is Paul ‘I’m no Terry Wogan’ Carter whose wit and humour you can pick up on twitter @juniorc0 – two finer examples of people willing to laugh at themselves you’d struggle to find.
So the key points that Kate made in the interview, that are also I believe covered in the documentary were:
- TV portrayal is oversimplified – soaps do disability as though disabled people can only be baddies or get miraculously healed. This struck a chord and reminded me of Ann McPherson’s words at #box10 yesterday when she pleaded for normal stories – not just heroic or tragic experiences to be shared.
- “Disability is a subject that is inherently funny and we should be able to laugh at it, and we shouldn’t be scared about it and that’s what we’re trying to put across in the programme”. The discussion covered the huge progress that the political correctness movement had led to, Mat no longer being called a spastic in the street for example, but it was also acknowledged that one legacy is that some people are so concerned about saying the wrong thing that they’d rather say nothing at all.
- her own sense of discomfort at joking about disability
- her uncertainty as to Kate’s credentials to say such a thing – you see Katie Kate is an unusual case in that she doesn’t appear to have a disability, most of the time. Indeed in all the time I’ve known her I’ve never even seen her wheelchair – but it does make a star appearance in the documentary, look out for the snazzy purple number.
Mat states the need for disabled people to reclaim the language used. The conversation then turns to Oscars being given to able bodied actors playing disabled parts – Mat’s response, a quip that he is getting long prosthetic arms made so he can win an Oscar playing an able bodied person Then, when this interview couldn’t get any better, the conversation turns to Glee, you couldn’t ask for more. There is a discussion about Kevin McHale, the actor who plays Artie – but is himself able bodied. Mat and Kate explain that it probably wouldn’t have happened in the UK any more, the BBC policy is to cast to fit – “if the shoe fits or if there’s no shoe, or no leg” – brilliant.
The interview ends with high praise indeed from Sian and Charlie who state that it’s a genuinely very funny programme, that’s absolutely fascinating and not worthy or PC in any way.
Mat F signs off the interview with passing the spotlight back to Kate Monaghan ‘the future face’. I couldn’t agree more. So one final time, it’s on BBC2 this Friday at 9pm; don’t miss it.
Today I’ve been hearing about the power of stories and thinking about the validation of hearing your story told, or telling someone’s story, especially if it is likely to have a positive impact on someone’s life.
So I’m going to quickly tell my story for this week and like all good stories there’s a twist (well request) at the end!
This week I am the Director of research in practice for adults – we’re a partnership organisation, a charity, local authorities are members in our network for a (very) small annual fee and we support them to use evidence (which we class as research, service user views, practitioner wisdom) in their practice to improve outcomes for people who need support. You can learn more about ripfa on our new blog or our website. This is of course my professional role – my job, not my life – we’ll come back to that.
This week I am also a granddaughter to my fantastically impressive grandparents, who live independently still, getting up in the morning, cooking their own meals and keeping each other company, at the grand old age of 90 and 92. They live next door to my parents and get far more support than they probably realise from them, but it enables them to stay independent, saves the taxpayer a fortune and means that they are a very central part of our family life.
This week I am also a daughter to my parents, Bobby and Sylv. Today while I was at #box10 my mum was at the Stroke Clinic (following a TIA she had just over two years ago) – they’ve signed her off now, fit as a fiddle, so that was great news to come home to. I’m really hopeful things will be as easy on Thursday when my dad gets the results of the PET Scan he had last week to see if his cancer has returned.
This week I am also a friend to my mate Anna and her three year old daughter, Liv. This time last year instead of baking ginger cake for #box10 I was baking wedding cake for Anna and her husband Dan. Sunday would have been their first wedding anniversary, except Dan died in February, so instead on Saturday night Anna, her sister Tracy, Dan’s mum Mary, Anna’s friend Katy and myself will be walking 15k around Swindon to raise funds for Prospect Hospice who cared for Dan in his final weeks.
So this week, as most weeks, my life is a mix of work, family and friends – all competing demands on my time and energy, all things I care very deeply about. I’m guessing it’s the same for lots of the people I come across, I don’t really separate out my work-other life, it’s all intertwined, if I’m honest its probably all the better for it. So this is me, a difficult and emotional week, but also an inspiring and uplifting week.
Here comes the twist though – I could really do with your help. I need just over £100 to reach the target we set ourselves to raise £500 in memory of Dan for the hospice who supported him. I was thinking at #box10 today what a fantastic difference they made to Dan’s life, he fought that tumour for years, with a dignity and stubbornness that defied the odds. His is both a heroic and a tragic story, but one that was eased considerably by the wonderful individuals at Prospect and the care and support they provided for him, his family and us his friends. Please, please, please donate a pound if you can afford to – if my blog stats are half way reliable, if half of you did that this week I’d smash the target. I’d really, really appreciate it. Thank you.
Dan and Libby- May 2009
Thank you for your support. Big thanks to @markbigsw @dalekdoctor @fergusbisset@amcunningham @rufflemuffin @irishandrew @soundgirl64 (x2) @alpew @sarknight @juniorc0@jeanetteleech @hen4 @segelstrom @tomarse99, @juniorc0 @jeanetteleech @redjotter @katiekatetweets @rich_w @niccombe @laurenivory …you too could join this esteemed list of fabulously generous people