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Educate, don’t bitch
Short ranty blog post warning…..
I’m watching the Paralympic Opening Ceremony and following it on twitter, and also catching comments on facebook. It’s impressive, I’m delighted to see so many athletes and proud that London are hosting. I’m also morbidly curious, as an obsessive people watcher, watching people who are different to the norm is just that little bit more interesting. I’m comfortable with disability, always have been, I think I’ve always been naturally curious in people, my parent’s chose our Primary School because it had a PHU, Partial Hearing Unit – not that I think that’d be what it’s called nowadays, (I suspect it would be something like a ‘Resource base for hearing impaired pupils’ or maybe for ‘pupils with hearing impairments’). My parents wanted us to know from a young age that people came with all sort of abilities, strengths, interests. I would spend my breaks hanging out with the deaf kids (or Deaf kids) and learnt to sign before it was fashionable – unfortunately I lost that ability when I stopped practising, although I learnt Makaton at university.
Annnnnyway, what am I on about. Well I have always been as comfortable with people who are disabled as I have with those who aren’t. As a primary school kid when asked what I wanted to be when I grew up I’d answer a Special Education Teacher. I was quite inspired by Mrs Renton who ran the PHU. I dallied in wanting to be a Blue Peter Presenter for a while, then special ed teacher training was cut and I ended up going to university to study for an Education degree. I volunteered as a teenager, and again at university, spending time with people with disabilities in various ways. I was fascinated by the Psychology of Special Education as an undergrad and ended up doing a PhD looking at education for children with profound and multiple learning difficulties.
All of this is context, I am comfortable with disability, I have spent a lot of time around people who communicate differently to how I do, who move around differently to how I do, who physically are different to me, who think differently to me. Some of these people may self-recognise as being disabled, others would not. I also have a lot of people in my twitter stream who do, some who don’t.
So what’s the headline about, well I happen to think we have an opportunity right now, an opportunity to engage people with disability sport, with disabled people and with what they can achieve in life or sport. There is an appetite, an opportunity, an excitement from the general public. A chance to, dare I say it ‘normalise’ disability, I know, I know, but the point I’m trying to make is that many people who only ever glance out the corner of their eyes, and those who blatantly stare at someone with a disability strolling down the street, have the chance to see what disabled people can, and do, achieve. They have the opportunity to learn, to watch, to engage. I think we should all be welcoming this chance.
….and yet my twitter stream has lots of people complaining about language, about how people refer to disability, about people getting it wrong. There are concerns about being too patronising, or claiming people are superhuman when really they’re just getting on with their lives. I thought Georgie Bingham summarised it quite well in her blog post about reporting the Paralympics. There have also been a couple examples of athletes getting into trouble with other athletes for dissing their sport or their efforts.
I know language is important, I know it *is* worth considering how we communicate. I also know that many, many people are currently engaging with the Paralympics who don’t have every day contact with people who are disabled, or don’t know that they do. People are interested, they are ready and waiting to be inspired. Some of them are alo nervous, worried about getting it wrong, offending someone or misunderstanding them. Please, please can we focus positively and educate people but let’s not get all huffy about people who get it wrong, not the first time anyway. I think as a society we have a long way to go until people are comfortable with disability, there is lots that needs to improve, but let’s take people with us on that journey. Let’s educate not bitch. I think we’re far more likely to change perceptions and have a lasting legacy if we bring people with us and do so positively.
Rant over.
Falling in love with LinkedIn #lazyweb
I’m doing something very unusual, I’m taking a 15min break this morning at work!! I’m doing this so I can share some of the brilliant responses to my earlier tweet in which I shared that I had challenged myself to fall in love with LinkedIn next month.
Luckily my tweet got an instant response, some people who wanted to share the challenge, such as @ColinWren
and @scotbaston
There was some instant feedback re groups from @AMCunningham
A response, with a hidden warning from @MartinHowitt
and my absolute favourite response so far from @JeanetteLeech
So what do you think? Are you a LinkedIn fan? Do you use it? Love it or loathe it I’ll love to know your thoughts…
Protecting patient interests
This week there has been a lot of focus on a person’s right to live or right to die. This week the case of Tony Nicklinson and Martin went to the High Court; the two men both have locked-in syndrome and had sort permission for people to help them to end their own lives. You can read the judgement here and there have been lots of thoughtful newspaper and blog coverage of the decision. In a nutshell the Court considered that they could not make a judgement because the implications went beyond these cases and would require a change in the law about assisted dying that needs to happen through parliament. As I followed the coverage of the case this week I couldn’t help but think about the personal implications, what would I want to happen in such a situation (answer – I don’t really know), how would I feel if it was my Dad/partner/brother with locked-in syndrome.
In my Dad’s case he was an incredibly fit and healthy man before he got cancer. He was a postman and walked between 10-15 miles for work, six days a week, for over thirty years. He spent his spare time walking on Dartmoor or supporting Army Cadets. The only time you’d find him sat still was occasionally of an evening, watching a film or re-runs of Dad’s Army on TV. One of my big fears, I think shared by himself and other family members, is that he would have a long and lingering decline. The reality of course is that he has lived for almost five year with cancer and has fought it ever since diagnosis. The thing about fighting is that it comes and goes, there are fits and starts, while Dad has certainly declined and has nothing like the fitness or stamina he once did, he has still been able to actively engage in things. There have only been a handful of occasions where Dad has been passive in his illness, I can probably count them on one hand. Those times, for me, are the scariest. They are the times when it’s like Dad isn’t there, the fight is seeping from his eyes, he is extraordinarily tired and not sure he can fight much longer. There have been about three of those occasions in the last two months, which in itself isn’t surprising as we know he is living on borrowed time now. That said, so far, he has usually been admitted into hospital at that point and given blood transfusions and other treatment, and stabilised and has managed to leave in a few days.
One consolation of Dad having a terminal diagnosis is that it gives you time to think and to some extent, to plan. Dad has a TEP (a Treatment Escalation Plan), this form contains a treatment protocol that was written by the medics treating Dad with my parents, following Dad’s decision to sign a DNR last year. That decision was not taken lightly. It involved conversations between my parents and their GP and various other people involved in Dad’s treatment. The form lays things out in black and white, I can’t remember exactly what it says (although I have a photo on my phone somewhere so I always have it with me) but the wording is something along the lines of Dad’s condition being so severe/advanced/terminal that further life sustaining treatment would be futile. It’s the word futile that sticks in my mind. It is a simple fact that were Dad to haemorrhage or have a cardiac arrest there is no benefit to him in being kept alive. I’ve discussed this before and the challenges of living with that reality here.
The last time Dad was admitted to hospital (about two weeks ago) I was sat with him in A&E as he was being assessed, clutching his TEP form. He said to the nurse asking him questions that he had a DNR and a form, I was quite impressed he said it so matter of factly. For a man who has been emotional about everything of late, who’d cried at people winning olympic medals, at failing to win, at preparing for them, to be able to keep it together when sharing that information is testament to two things in my mind – his strength, and his certainty about his wishes. The nurse asked if they had a copy of that on their notes, I shared the TEP with her so she could take another copy and said that it should be on Dad’s records (last time I looked at his file when we were in it was indeed stapled to the inside front cover of his folder). What she said next surprised me.
She said that if anything happened before Dad was seen by a doctor (there was a lonnng wait, it was a busy night) she couldn’t adhere to that. As a nurse she would have to treat Dad because their doctors hadn’t signed it off. Dad and I both queried this and she said she’d double check with her boss. Dad then piped up with ‘Don’t worry, my daughter knows what I want, she wouldn’t let you’, at this point she said to me ‘of course you know what your Dad wants, and you have the form, so you’d just have to stop us’. When she went off to take a copy of the form Dad asked if I was ok with that, luckily neither of us actually thought it would come to that, but I looked him in the eye and promised him that I’d stop them, even if it required me to physically intervene.
Later on the nurse came back and said not to worry, they had the copy already and it was all sorted. She’d also written on the board 222. The hospital crash team are contacted by dialling 222 and she didn’t wan’t to write DNR on the board, or No to 222 so she’d written it and crossed it out. She explained that it wasn’t nice to see it on the board and she didn’t want to upset anyone. This in itself was fascinating to me. This nurse was brilliant, she was caring, she was banterful, she put Dad at ease….but she was also obviously not that comfortable or sure about protocol or acceptability of withdrawing treatment. It’s no surprise given how little we as a society discuss these things. From my perspective that nurse was trying to balance Dad’s wishes with those of her own and her concerns for other patients.
There in lies the rub. None of us live in isolation. It isn’t straight forward when you consider an individual’s situation because we are all members of society, a patient in a hospital is a piece of a much bigger jigsaw. Whatever judgement or decision is made around the treatment for Tony Nicklinson or Martin, or my Dad on this microlevel, does have an implication for other patients, for the staff and for family members.
This morning I read another article in The Observer that talked about a man, L, left in a vegetative state following a heart attack. The Trust treating him, Pennine Acute Hospitals NHS Trust, consider that it is not in his best interests for them to intervene and offer ventilation/resuscitation if his conditions worsens or if he suffers a life-threatening event. His family are not in agreement. They think it should be for them to decide on his care and they believe it is too early (five weeks since his heart attack) to give up hope of his condition improving. The Court of Protection in London will be asked to make a judgement on this tomorrow.
I feel for L’s family I really do. I also feel for the people treating him. It is an almost impossibly difficult situation. Five weeks is not long to come to terms with the loss of the person who was once in your life, it is sometimes hard to accept the magnitude of the situation and it is hard to accept that there is nothing people can do – as a society we are lead to believe that medical science can cure most things these days. It is a devastating realisation when you come face to face with a situation for which there is no cure. It takes time to accept that reality and I’m sure for some that is never reconciled.
I think we’re really lucky that my Dad has chosen his treatment wishes himself. I feel grateful that we’ve had a chance to discuss them with him. I actually feel more empowered having been put in a situation where he has given me carte blanche permission to advocate for them, by force if required. I hope it never comes to that. Ultimately these situations don’t tend to be black and white, you can be sat clutching the form of wishes and yet still need to intervene, you can also be sat feeling like you need to advocate for what your loved one would have wanted – in the face of a hopeless reality and a bunch of medically qualified personnel telling you something else – and have no power to do so.
Life and death decisions are complicated and none of us are immune. My advice would be to discuss with your loved ones and next of kin what you’d want to happen in a similar situation. I’m not sure what legal weight a Living Will or an Advanced Directive or a TEP actually holds, but I know it is much easier to confidently advocate for a loved one if you have discussed a situation and know what they would have wanted.
The power of short term goals
About two and a half years ago my little sister gave birth to my gorgeous niece. It was about that time that I started blogging, partly because I hoped that I’d be able to record what happened in life and give her a sense when she’s older (if she wanted it) of how awesome her Grandad was….at the time I never thought she’d live to be old enough to actually remember her Grandad or know that for herself. Dad had lived with bile duct cancer for two and a half years when she was born and living long enough to meet her had been a significant motivation.
This was the two of them when she was a few hours old in the hospital

If anyone had said then that Dad would get to see her grow into a toddler and maybe even live long enough to meet her younger sister (if medical imaging is correct), I don’t think any of us would have dared hope so, never mind believe it.
Yet here we are, my sister is overdue and is going to be induced next week. Dad has been really poorly over the last weeks and months. About ten days ago he started coughing up blood, this is a new development for him. He had occasionally vomited and has been bleeding internally (which was the reason for the palliative chemo) but never before had this happened. I wasn’t at my folks house but Mum rang to say what had happened and I met them out at the hospital. To cut a long story short Dad spent three days in hospital as they stabilised him, all the while waiting for a bed at our local hospice to become available so he could go there for assessment on the way home. Last weekend there was still no bed available and Dad didn’t want to spend the weekend in hospital (it was particularly unpleasant that week, if you can remember that far back it was sunny, and there was no air on the ward and half the windows had been screwed shut which didn’t exactly help). Dad convinced the hospital palliative care team that he was good to go home and home he went.
We watched the Olympic diving together last weekend, Mum Dad and myself. I think we all shed a tear when the video intro to Tom Daley was played – his Dad was only 40 when he died last year from a brain tumour. He was 40 and Tom D was a seventeen your old lad, training for the Olympics and studying for his A-Levels. He won bronze last weekend and the local paper informs me that he maxed out on his results, with 3 As and A*s, what a success. I am almost (not quite, steady on) but almost twice Tom Daley’s age and I am seriously struggling to get my head around my Dad’s situation still. I don’t think anyone can underestimate the scale of his achievement.
The last fortnight has felt different to any that have gone before. Mum and I were out of kilter (which rarely happens) but meant we weren’t communicating very well. Dad was very, very low and has now seriously picked himself up again, fighting all the way. In terms of lists of things I never thought Dad would live to see, London 2012 was up there too. For all the complaints about us being a nation of fickle slobs jumping on the Olympic bandwagon to become armchair pundits, I’m not complaining, it has seriously helped Dad’s positivity and determination, so #ourgreatestteam can take a bow as far as I’m concerned.
So, here we are. The middle of August 2012. Dad has a matter of days (hopefully) until he becomes a Grandad again. He is also now less than four weeks away from his 65th birthday and a very significant transaction. My Dad joined the Navy as a teenager and worked ever since, until he took early retirement and two months later was diagnosed with cancer. Having worked all his life he is incredibly determined to claim his pension, at least once. Some fairly powerful short term goals going on there.
One of the absolute hardest things about life at the moment is the lack of certainty and structure. The inability to plan more than a day or so ahead. The fear I have to making commitments or booking a holiday. The constant niggle when I try to make arrangements. I’m on standby duty for my sister, she has mates around all weekend and is booked to go into hospital next week but if she goes into labour on Sunday night I’ll be jumping in my motor to get to her’s to look after number one niece while number two niece arrives. As much as I hate uncertainty these days, and hate not knowing if I’ll be called on, for this occasion I’m chuffed. I can not wait to visit a hospital for a good reason and more to the point I can’t wait for my Dad to meet his granddaughter. I’ll make sure when she’s older that she knows what an important part she played, a solid strong motivator for her Grandad to hang on and find some more energy and courage to live a little longer, fighting a hideous disease.
A month or so ago my sister got upset when I rang her because she couldn’t do anything to help. I reassured her then that she was doing more than she realised, she was reproducing, she was carrying a ray of hope in her belly, so much more than I could ever have done. After all its the short term goals, however small and insignificant in the big scheme of things, that provide the moments that make life worth fighting for.
***Update*** My new niece, Phoebe George, arrived last night (19 August) weighing in at 8lb 6oz. I’m hoping to get to meet her the day after tomorrow and will post some photos afterwards. Next goal is for Dad to meet her….watch this space
Five things I wish I knew when I collected my A-Level results
One of the few (possibly only) perks of having a Dad who was a postman was that occasionally, just occasionally, you got letters before they were due to be delivered. That is the same day but maybe a couple of hours before the postman would normally deliver them because rather than wait until our own postman made his way to our house my Dad would pop home around about breakfast time with them. Strangely though I can’t remember whether this happened with my A-Level results, either it was so traumatic I’ve wiped it from memory, or the little details fade into insignificance as time goes by. I have a niggle in my mind that maybe Dad was at Cadet Camp when they arrived, which would have meant normal service, or maybe I had to go into college to pick them up, I don’t remember. I guess that is my first learning point really:
1. However significant your feelings are today, they’ll fade with time. The good and the bad ones.
I left school at 16, a very good grammar school with a fantastic academic record to study for my A-Levels at the local ‘technical’ college (the ‘technical’ bit was spat out by my head teacher when I asked her for a reference – that she refused to give, deferring to her Deputy Head hoping she’d talk sense into me). This was a decision that few people in my life understood, and my parents took some convincing, but I’d had enough of the regimented and ruled life. I’d had enough of the snobbery and expectation. I’d had enough of feeling like I didn’t really fit in and I craved to no longer wear the pedantic uniform (yes a uniform can be pedantic!). I was desperate for freedom and I also wanted to study Psychology, not on offer at school at the time, so to college I went. Lots of people warned me I’d fail my A-Levels. Some threatened that I’d ‘drop out’ of education and/or end up getting pregnant. I don’t think there was a single person who believed this was a good decision.
2. Believe in yourself. No-one knows what is right for you better than you yourself. Listen to other people, seek their advice but follow your gut (and prove all the doubters wrong).
The truth of it is they may have been right. Tech was an amazingly different experience. Suddenly no-one cared if you turned up in the morning, there was certainly no-one with a ruler measuring the length of your skirt in relation to your kneecap – in fact in the two years I was there I don’t think I ever wore a skirt, after about the second week tutors didn’t even bother taking registration – never mind push you to study. There was freedom, in bucket loads. I revelled in it, I had fun, I met new friends and loved having boys to hang out with (single sex education was not an inspiring environment for me), I played rugby, I socialised, I studied a bit – nowhere near as much as I probably should, I got involved with the Student Union, and I worked (at Sainsbury’s) a lot.
It was a great couple of years and definitely amongst the most formative of my life. One of the most useful things I learnt was to motivate myself. You really had no choice because there weren’t any other people interested in doing it. I had a tutor who I saw a handful of times, we discussed university and I decided to apply. No-one in my family had ever been to university and Sainsbury’s were tempting me into their trainee management programme, but luckily my friend Geoff who also worked in the bakery was studying at Cardiff and he convinced me life had more to offer than supermarkets alone. I owe him, a lot.
3. Earning money is fantastic, especially when you’re young, but there are some experiences that money can’t buy and finding the time to get to know yourself (cheesy as that sounds) is one of them. If I was facing £9k tuition fees I very much doubt I’d have felt able to goto university, but I do feel it would be worth that if you can afford it.
The downside of all that freedom was that I studied, but I also lived. I had an offer to study Psychology at Cardiff the following year (I was going to take a year out with my mate and travel). My offer required me to get 3Bs, something that should have been well within my grasp. However, when my results came in it was not to be. I hadn’t got the grades. I had 2Bs (Psychology and English) and a D (in RE – which I enjoyed far too much, and studied far too little. That said I did meet my first drug dealer on a bus in Leeds on the way to visit a mosque – for a girl who’d grown up in the sheltered Westcountry that was worth way more than studying books would have been). I digress.
The results weren’t good enough. Worse still my mate had failed her A-Levels altogether and was going to have to stay and retake them, there would be no travel and hijinks. My Mum always says that it was thanks to Geoff that I went through clearing, I didn’t really know what to do and the Sainsbury’s option was looking more attractive, it came with a pay packet to start with. Anyhow I called Cardiff and spoke to the admissions tutor for their Education degree. It allowed me to study psychology and still get BPS recognition. It allowed me to start that September. It allowed me to leave Torquay and yet more freedom beckoned. So Cardiff it was.
4. Just because you don’t get your first choice doesn’t mean that you can’t find something that fits. Although you won’t know unless you ask…
To cut a very long story short I did my degree in Education, I followed a similar pattern to my A-Levels really, I studied and socialised in equal measure. I ended up with a 2:1, I actually fell in the points band between a 1st and a 2:1 but when asked by my tutor (strangely enough the same woman who’d offered me my place through clearing) to appeal my degree classification to get the 1st I refused! My exact response to her was that I’d worked hard and earned my degree, and was exceedingly proud of it, but I wouldn’t beg anyone for a better grade!
A couple weeks after my degree results my Dad came home with a letter I’d be desperately waiting for. It was the letter from ESRC to say whether they’d fund my PhD. I was petrified they’d say no (because I only had a 2:1 not a 1st – because of my own stupidity/stubbornness/values) and then I had no idea what I’d do – but luck was on my side and they said yes, they’d fund me to study full-time for three more years. So I embarked on my PhD, under the ever watchful eye of my undergrad tutor (who’d given me my place through clearing year earlier). I studied for three years, got my first proper job as a lecturer in Dublin and finished writing up my PhD. Seven years after I’d picked my A-levels up I sat my viva and six months later I graduated for the second time.
The first person in my family to goto university became Dr Julian!
5. Nothing is as bad as it first seems – nothing.
I remember getting my A-Level results and feeling like my world was crashing down around my ears. I felt like I’d let my parents down, and I’d let myself down. I knew that my grades were ok, but I knew I could have done so much better. I couldn’t study Psychology, I wouldn’t get to university, suddenly I felt trapped in my old life when I’d started imagining a new life months before. There would be no adventure, no travel, no leaving home, no university, no nothing. Slightly dramatic, but I felt completely overwhelmed and completely disappointed. I carried that sense of disappointment for a long while, I put on a brave face and went through the motions, but I found it hard to shake the feeling I could have done better. Looking back I am so grateful that Geoff encouraged me to look up and widen my line of sight past the immediate, I’m glad I made the call and took a punt on my degree course. It was the best decision.
Next week I’m going to the wedding of one of my two best mates at uni. We met on the first day, in the canteen at our halls of residence. She was studying education too and I was relived to meet someone else to find our way to our first lecture with. We spent the best part of three years studying, socialising and hanging out together. When I started my PhD she studied a PGCE, then went on to become a teacher, studied some more and now she’s an Educational Psychologist. She didn’t get great A-Level grades either, few people on our course did, but we’ve done really well considering, even if I say so myself!
If you put your mind to it anything is possible. If you don’t get what you want today, don’t despair. Take some time, talk to people, think about things and make a plan of action. Then whatever that plan is give it a go. What’s the worse that could happen?
The important thing in life is not the triumph but the struggle
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.
Gold medals = Gold postboxes #inspired
Seven days after the spectacular opening ceremony of the 30th Olympiad, something quite remarkable has happened, Team GB is sitting third in the medals table. Seven days in and we have 14 Gold Medals, 7 Silver and 8 Bronze. That’s not it, the tally will continue to rise. Who’d have thought it.
Well seemingly Royal Mail had thought of it. They are issuing special stamps to celebrate each win of a Team GB Gold. Team GB Gold Medal stamps will feature an action image of each Team GB member or team that wins gold this summer and perhaps most impressively the stamps are all due to be on sale in at least 500 Post Offices within 24 hours of the Gold medal win. Thinking about it maybe they didn’t think we’d be as successful as we have been!
Even better than Gold Medal Stamps though, are Gold Medal Postboxes. To further honour the successes of Team GB, the Royal Mail have a team of people on standby to paint one post box Gold in the home town of each medal winner (pairs will get a Gold Post Box in each of their home towns and teams of more than two will have one in a location of significance to the whole team). The post boxes will be painted within a couple of days of the win, and the website features photos of each post box and the address so you could go visit.
An inspired response from Royal Mail in honour of some seriously inspiring performances.







