A letter to my niece on her fourth birthday

April 4, 2014 2 comments

Dear Libbie,

Last month you turned four, and I’ve thought long and hard about whether to write this letter, the letter I wrote you last year proved really popular, so I was worried that I might not be able to live up to it, but in the end I decided there was nothing to lose and it didn’t really matter if it didn’t!

Quite a lot has happened since last year. We’ve all got more used to life without Grandad and Great Grandad Bert; your Mummy and Daddy bought a house in Devon and when Daddy left the army you all moved down. I love having you and Phoebe closer, and your Mum and Dad too, even though Daddy is working away at the moment. You started at pre-school and settled in really well and Phoebe learnt to walk, so she’s around everywhere. Sadly Nuby doggy died this year, but you were so grown up and sensible, imploring me to come and see her when I arrived to take you to school – completely matter of fact about it. You remain a brilliant big sister, and I’m delighted that so far you seem to have stuck to all of last year’s ten suggestions. You’ve also taught yourself, with a little help from Auntie Georgie, to take selfies, keep doing it Libs, they’re ace. As are you, you are one completely ace, inquisitive, kind and brilliantly determined young lady.

libbieselfie

So what advice do I have to offer you this year? As last year there is nothing to say these are the most important things, but they might be useful.

1) Don’t take any notice of people who tell you that you’re bossy. If you were a boy people will probably say you’re a natural leader, but because you’re a girl, you’ll be called bossy. Take no notice, stay as you are, offer suggestions, join in, consider other people, but don’t stop getting involved.

2) Never stop asking questions. This was number two last year as well but it is so important it’s worth repeating! As you get older people play this trick on you where they suggest asking questions is dumb because it let’s on that you don’t know something. That’s ok, in fact it’s more than ok, it’s essential. People who pretend to have all the answers are just pretending. Even your teachers and your Mum and Dad sometimes.

3) Keep reading. When Auntie Georgie was little she was called bookish, like this was a bad thing. Grandad used to tell her to get her nose out of a book and get outside!! To be fair Grandad was probably right, you need both, but don’t stop reading. It’s a great comfort in life to be able to read a book, and you learn so much.

4) Spend time outside. The older you get the more time you seem to spend indoors. Even now you spend quite a lot of time inside, but there is so much to do outside, there are gardens to play in, great play parks and of course the beach. Sometimes when life feels tough, just spending time outside in nature can help.

5) Wear bright colours. I know you like pink and that’s your favourite, but you look great in all sorts of colours. Keep wearing bright colours Libbie, wear spots and stripes, trousers or dresses, whatever you like as long as it’s comfy. At Christmas you insisted on wearing your Doctors outfit and your beauticians accessories at the same time – and why not, you can wear what you like.

6) Dream big. Grown ups tend to focus on what you can’t do, what the problems or limitations are. These usually involve time or money or other things. Keep dreaming big Libbie, you can be and do anything you want to, now or when you grow up. Ok, Mummy and Daddy might not let you do some things until you’re older, which is annoying, but they’re probably right.

7) Sit quietly. You and I are both quite loud people, we like talking and being sociable, and chatting to folk. That’s fine, it’s really good most of the time, but sometimes it can be good to sit quietly, or walk quietly. I find that when I stop using my mouth my brain often works a little differently. It’s worth being quiet every once in a while.

8) Don’t worry too much about money. The older you get the more people talk and worry about money. Everyone needs a bit of money to exist, to have somewhere to live and food to eat, but often grown ups get so caught up worrying about money they forget about what’s really important, about being happy and kind and helpful and about spending time with people who respect you and make you feel good about yourself. Lots of these things don’t require lots of money, but they are worth more than anything else in life.

9) Listen. I know that adults nearly always have something to say, and they’re not always great at listening, but most of the time it’s important to listen to grown ups. Also it’s important to listen to your friends and other children, and your little sister even though she often says the same things at the moment. Remember sometimes you have to listen really carefully not just to hear what people say, but also to work out what they’re not saying. This is a lesson for life this one Libs.

10) Stay true to yourself. Now you’re at pre-school and meeting lots more children, you will find that some things are fashionable. There will be unofficial rules that are made, about what you wear or who you speak to, who you should or shouldn’t be friends with. Take no notice, be true to yourself, do what feels right. Don’t get sucked in to having to fit into someone else’s view of life Libbie, you write your rules, and you’ll go far. No-one knows you as well as you do yourself, actually right now Mummy and Daddy probably know a lot about you, but you know yourself, you know what is right and wrong, you know how to be kind and share and think about others, but you also know that you can be friends with boys and girls, you can be anything you’d like in life. If you stay true to what’s important to you, you’ll find rewards money can’t buy.

So that’s some thoughts to add to last year’s. You’re growing into a fantastic young person and I’m very proud to be your Auntie.

Lots and lots of love,

Auntie Georgie

xxx

Empathy, pain and action

I’m struggling to know where to start with this blog post, which if I’m honest doesn’t happen to me very often. I’m usually blessed with the ability to sit down at my keyboard, churn out words for a wee while and then sit back and edit it into something coherent. Today I’ve been procrastinating for at least an hour (I’ve even done the washing up) which is a sure sign my thoughts aren’t fully formed – but I want to share them with you guys, so you may have to be patient with this being a little incoherent.

Over the last couple of years life/fate/destiny/cancer/death has conspired to sharpen my focus on what really matters in life, for me any how. I’ve blogged before quite a bit about death and dying, about Life after Bobby (my Dad) and generally trying to ascertain what life is all about. I’m slowly forming a half baked theory centred around the suggestion that few people really ask the question of what is the point. My supposition is that lots of people just keep busy, with their careers, relationships, kids, grandkids, religion, material goods, holidays, whatever it is to stay busy and, consciously or subconsciously, avoid asking the point of life question. The second part of my supposition is that this may be a sensible plan, because when you stop and think about it, there are no easy answers (or I’m completely missing them).

There’s something about loss and grief that brings this reality into focus like a massive great big reality truck rolling up and parking in front of you, you can’t ignore it, or easily step around it, so you just have to wait until it moves on. In this period of waiting, of quietness, of accepting that there may be no point, personally I found a relief of sorts. If there is no point, then what do you have to lose? Over the last eighteen months or so this reality truck has parked in front of me on a number of occasions, my options have been to sit it out, do nothing, but occasionally share my experience (mostly through social media), to distract myself with work (which I’ve been loving), to distract myself with curry (Social Care Curry Club has been a brilliant distraction, and almost full time occupation, at times), to travel (which I can never get enough of) or to find comfort with those who share my pain or loss. What I’ve realised acutely in that period is the difference between empathy and sympathy.

I really hope you watch Brené Brown’s RSA Short, even if you’ve seen it before, it only takes 3mins! It starts ‘empathy fuels connection, sympathy drives disconnection’ and within it she identifies 4 elements to empathy: perspective taking; staying out of judgement; recognising emotion in other people; and communicating that.

Empathy is a choice, and it’s a vulnerable choice, because in order to connect with you I have to connect with something in myself that knows that feeling.

The short goes on to highlight a brilliant take away point, that rarely, if ever, does an empathic response begin with ‘at least’. This happens when someone shares something that’s incredibly painful and someone tries to paint it a silver lining e.g. I had a miscarriage… …well at least you know you can get pregnant; I think my marriage is falling a part… …at least you have a marriage; My son died in your care… …at least other elements of our services are exceptional.

OK that last one isn’t in Brené’s video, but it is on my mind. If you don’t know what I’m referring to, I wrote a post a couple of weeks ago that explains more. It’s a month since the independent report into LB’s death found it to be entirely preventable, and since then I’ve witnessed what I perceive to be a whole heap of spin from the Trust responsible, and a remarkable online and offline connectivity, coming together to support LB’s family and friends campaign for #JusticeforLB. There are three elements to what Justice would look like, the first centres around LB and what happened; the second is more generally around those responsible for LB’s death – Southern Health and Oxfordshire CC, and the third is a much wider, societal issue around how people with learning disabilities are viewed, treated and valued within society.

So where am I going, I did warn you this post might be a little incoherent. I guess I wanted to reflect on my own personal response to LB’s death, share why it is important to me, and raise awareness amongst my networks of why I think this is all our responsibility. Years ago I came across Patient Opinion, at a time when I was quite angry with life and disillusioned with some elements of care. Someone quoted from an old post of mine this week that ‘three years ago Patient Opinion changed my life’ and in many ways this is completely true. You can read the post here if you’re interested, but the good people at PO helped me channel my anger and pain into something more useful, and help improve things in my own little way (mostly by blogging, nothing world changing but if everyone did something small….).

Four or six weeks ago I got chatting with Sara, LB’s mother, about the then impending publication of the independent review. I can’t begin to imagine what Sara must have gone through, but I can easily relate to her grief, and anger. I guess metaphorically speaking I climbed down into her cave and we chatted, we chatted LB, we chatted hopes, aspirations, grief, loss, value, labels, disability, ability, meaning. Most of these conversations happened in public using social media, although there was the odd email exchange too. I felt quite strongly that the world needed to hear about LB, about his life and death and the void he left (not dissimilar to how I felt about my Dad really). Sara has been blogging for years, and a month ago we launched #JusticeforLB together. What was only ever meant to be a twitter account and a hashtag, rapidly evolved into a movement for change.

I’ve received mixed responses to my involvement so far, where people know I am involved. A few people have been intrigued, as have I if I’m completely honest, as to what is driving me. Several people have been complimentary, really there’s no need, I think anyone would do the same if they could (I appreciate that I have the ‘advantage’ of being self-employed, so I can speak my mind) and that brings me onto the last point, several people have warned me/mentioned/suggested that I’m being foolish getting so involved and I risk damaging my fledgling business. This one is a risk I’m prepared to take, because to be blunt I couldn’t look in a mirror if I didn’t.

Two weeks ago I met Sara and Rich in the flesh for the first time. I had something equating to butterflys!! We’d been in such close contact what if we met in the flesh and didn’t like each other?! No need, any fears were allayed quickly in that regard. So, where does this leave us. This isn’t about wanting to make things better, things will never be better, there will always be an LB shaped hole in their lives, they’ll never hear this laugh again.

Can you imagine what that feels like? I’m not sure I can. That said, I think subconsciously I’ve adopted PO into my DNA, and as much as I empathise with Sara and Rich, I’m also keen to work with them to change things, and time is of the essence. This week NHS England released statistics showing that 2,577 people with learning disabilities, autism and behaviour that challenges, remain inappropriately in hospital. Most worryingly there were twice as many people admitted to inpatient units between 30 Sept and 31 Dec (n=247) as there were transferred out (n=124). Bill Munford, who has recently taken over the Winterbourne Joint Improvement Programme, has acknowledged progress is not fast enough, but this is frightening. So we need to move on #JusticeforLB and move now.

Remember there are three elements to justice, only some of them relate to the distinct situation that LB found himself in, and Sara has been explicit (repeatedly) about the excellent support she has received from Oxfordshire Family Support Network, Inquest, LB’s school, the Police, the Care Quality Commission, and most recently David Nicholson and Jane Cummings from NHS England. This is not some sort of witch hunt or anti-NHS campaign, it is however about accountability.

Yesterday was a year to the day that Connor entered the assessment and treatment unit, Slade House, where he died 107 days later. The #107days campaign was put together for a number of reasons, partly to raise funds, partly to channel the pain, anger and hurt (growing by the minute every time a new person heard what happened), and mostly to allow a collective response to making progress to bring #JusticeforLB and all people with a disability. Together we are making a difference. Join us.

Screenshot 2014-03-20 22.41.19

Mama lions, pain, privilege and justice

March 3, 2014 2 comments

The more observant among you will have noticed I’ve been tweeting a bit about #JusticeforLB lately. I kind of figure that if you read this blog, or my tweets, you’re fairly used to me irritating you or over-sharing on things like death and dying. I know that’s not easy for everyone but as I’ve blogged before, I think it’s important that we don’t ignore pain and grief and that we develop a way in which we can talk openly about death and dying, if we wish to.

Last July I was absolutely horrified to read this blog post from Sara Ryan @sarasiobhan:

Day 107

That’s it, the whole post. If you can bear to read more you can visit Sara’s blog and follow their story since July last year. Or better still start with this post: The day I got locked out the first one (written in May 2011), it’s worth reading from the start but you’re likely to need tissues and I wouldn’t recommend doing it at work!

The key facts are that LB (Laughing Boy – here’s why) was a fit and healthy young man, who happened to have epilepsy and autism, but was in good health. This is the same as any other young man, eighteen, with his whole life ahead of him. He was admitted to a specialist unit ran for the NHS by Southern Health NHS Foundation Trust on 19 March 2013 and he died 107 days later on July 4th. Some independence day.

The fact that a fit and health young man could drown in a bath, under the NHS Care, in the UK, in 2013 is beyond me.

You can read the full independent report into LB’s death here. It was found to be wholly preventable. It never should have happened. Many, many people have taken the time to share their thoughts on the report and the implications and you can read the commentary here.

What follows since then is almost as unbelievable. I would think if such a horrific thing happened that the least you’d expect from those responsible is that they’d hold their hands up, apologise and do absolutely everything within their gift to make things right. Sara has written some thoughts on what that might look like here. Sadly, the CEO of Southern Health has yet to be seen, declined to do media appearances and we all sit and wait for this award winning CEO (yes really HSJ NHS Chief Exec of the Year in 2012) to step up and take accountability. I’m not going to recount all the ins and outs of the last week here but you can grab a summary here.

I want to talk briefly about mama lions, privilege, pain and justice. There has been much talk over the past week of mama lions protecting their cubs. I’m not a parent, completely confident I’d not be a very good one, don’t really relate to the language or sentiment, and yet, from somewhere, I find I too have developed a sense of wrong, pain and defensiveness that I’m fairly sure would make any lion scared of my roar! I am *so* angry on Sara’s behalf, on LB’s behalf, on behalf of everyone who society has deemed is slightly less important by way of their disability, individuality, race, gender, hair colour, postcode, whatever the hell it is. My inner sense of injustice has every cell of my body in a raging roar. If I’m honest this scares me a little.

Then last week someone mentioned privilege. Like somehow Sara was ‘lucky’ because she has a privilege that allows her to fight this. Shit man, I get where that comes from, and yes she’s educated, and professional, and white, and eloquent (damn she’s eloquent while also being able to swear like a trooper), but there really aint no privilege from where I stand. Privilege flew out the window a long time ago, there isn’t any privilege when it comes to trying to get answers of how your son died, and trying to put an end to people’s deaths being ignored (see Death by Indifference for more).

Sara and her family have a long fight ahead of them. As Kay Sheldon, someone who knows a thing or two about fighting for justice, had to say earlierJustice is hard to come by. You have to have money, nouse & resilience. Sara has nouse in buckets, resilience like few people I’ve ever known (but we should be wary because any bucket can spring a leak), when it comes to money you can help here.

Privilege does come in to play here, but maybe not in the way everyone would think. From where I’m sat if Sara, who wears that coat of privilege, who is intelligent and articulate, can be silenced and sidelined by staff. If that mother lion who fought for 18 years to raise her son and give him an amazing life, if she can’t keep her cub safe, then who the hell can? I am not for a minute inferring she could have done any more, I am in complete awe of her ability, dignity and resilience.

Lion

Sara, and many people with learning disabilities, friends, carers, strangers have added their voices to this conversation.

The regulator, Care Quality Commission, have added theirs – see the discussion at about 1hr in to their February 2014 Board Meeting (the discussion last about 15 minutes).

Where is the voice of social care? Where is the NHS? The CCG? I believe that the voices missing are those most needed. Where is the comment from the social care commissioners who somehow decided an Assessment and Treatment Unit was worth commissioning? Where is the CEO of the Trust that was responsible for LB’s preventable death? If we’re really talking about privilege, these are the people we should be levelling that at. These are the people who are on large salaries to make these decisions, where are they when they need to show some accountability? I’m not just talking about those in Oxfordshire either, most social care and health tweeps who I connect with have been shamefully quiet on this issue so far. I’m sure there’s an element of head down and hope something similar doesn’t land on your desk soon, but honestly, that’s half the problem.

Sara may have a better chance to fight this battle than some parents, or than some people with learning disabilities who have no-one to fight for them and are stuck in assessment and treatment units. But, a better chance, really? It makes no sense to me that she should need to fight at all.

At the latest count 722 people have joined the JusticeforLB campaign on twitter, all voluntarily, no salaries or union reps or workforce development opportunities here. We have no specialist media training, we have no public funds to get answers, we have no real privilege, but we have a whole heap of pain, determination and a set of values that mean we won’t give up.

In the words of Katy Perry (yeh I know, forgive me):

I used to bite my tongue and hold my breath, scared to rock the boat and make a mess.
So I sat quietly, agreed politely, I guess that I forgot I had a choice.
I let you push me past the breaking point. I stood for nothing, so I fell for everything.

I got the eye of the tiger, a fighter, dancing through the fire.
‘Cause I am a champion, and you’re gonna hear me roar.
Louder, louder than a lion,
‘Cause I am a champion, and you’re gonna hear me roar!

Please keep spreading the word about Justice for LB and do what you can to support. You can sign up for email updates here.

A trajectory of pain and grief

February 13, 2014 4 comments

I’m going to start with a disclaimer! This was a blog post constructed on a train, the image was sketched on a train, my thoughts are sketchy – I’m not sure if this stands up but am putting it out there, a half way constructed post, for discussion, debate and musing over. Please do share your thoughts, experiences and opinions in the comments.

2012 was a major year of loss for me. My Grandfather had a fall at the start of the year, breaking his hip, recovering, then falling again later in the year and being admitted to hospital. He switched hospitals but never returned home, dying in July. In his 90s, having lived a full and productive life, his death was a big loss for our family but it was also a release in a way. I still miss him frequently, but for me it’s not painful any more.

My Dad died in November 2012. He had found out he had cholangiocarcinoma (bile duct cancer) five years previously, days after his 60th birthday in Nov 2007. He lived with a terminal diagnosis for his last two years and in many ways cancer was a positive experience, Dad worked hard to find the positives. In some way I think I started grieving for Dad as soon as we knew his condition was terminal, there were periods where he was very poorly and they acted like preparation for loss. I found it painful to watch Dad’s health deteriorate and watching him stoically soldier on was almost more painful than his death in a way. We received amazing support from our local hospice and after a period as an inpatient, Dad returned home and died at home a number of weeks later.

When it came to grieving for Dad, my pain was almost as strong for him when Grandad died, as it was for Grandad. There was something about the injustice of it all. It was also painful (for me) in the weeks immediately before Dad’s death, which when it came, almost provided relief. I’ve tried to plot this on the following graph, where Grandad’s death is the orange and Dad’s the blue:

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This week Sara Ryan yet again shared the trajectory of loss that she has faced. Since her son, LB, died unexpectedly in an NHS treatment facility. LB was a young man in rude health, just 18 years old, having has epilepsy for a number of years, he drowned in the bath. Horrendous enough as that is for any family to deal with, the trust ‘responsible’ for his care have made mistake after mistake after mistake, in how they are treating the family. Sara’s tweets explain it all here.

Now I’ve not asked Sara about this, but from where I sit the behaviour of Southern Health is tantamount to emotional torture, the constant promises and let downs, agreeing things then changing their minds, always moving the goalposts. I don’t know what possesses them, and I don’t want to discuss that here, I just want to consider what damage their behaviour is likely to do. Thinking of the trajectories of grief I shared, I’ve overlaid how I think it must feel to suddenly, out the blue to hear that your fit and healthy son has died…if that’s not enough to break you, there is no let up to allow grief, pain and loss to subside because the people responaible are toying with you, constantly screwing your emotions. I guess it might look something like:

20140213-100701.jpg

The stars indicate when the people died, the trajectory for Sara and her family and friends must be beyond painful. Someone has to step in and make this stop, surely. They need to be able to grieve and let go of the pain, not be constantly poked and prodded and let down. Someone please make it stop.

Now.

Categories: Uncategorized

My 50 thousandth tweet #JusticeforLB #LBBus

February 11, 2014 3 comments

Less than a year ago I wrote a blog post about my 35 thousandth tweet. That post focused on the inspiration provided by Kate Granger and Philip Gould and my personal support for their beliefs that we need to relearn the art of dying. This is something I feel passionately about, even more now than I did then. I’d followed Kate’s blog for some time (and still do now) and love the way that she shares her perspective and stimulates debate. The post that I still return to the most is one she wrote about the media portrayal of cancer, go take a read, but please do come back because I want to tell you about someone else, LB.

I love following blogs, it’s like the perfect literary form for me as a pretty obsessive people watcher. Blogs seem to tend to give you a bit more human or authenticity than a newspaper article, a conference speech or a book. It’s that humanity and authenticity which hooks me in. I follow a number of blogs, an eclectic range, but amongst my favourite for some time has been MyDaftLife. Written by Sara, she describes the blog as:

This blog started as a record of random happenings that I’ve experienced over time. It is was also about capturing everyday life, through image and snippets of conversation and observations, at home, on the bus and just wandering through life. Key players in these events, apart from LB (see below) will probably include Richy Rich and kids; Rosie, Will, Owen and Tom. As for me, I am a sociologist by background and work at a local university focusing on disability, health experiences, difference and inclusion.

The main character in this beautiful blog is LB, or laughing boy. A delightful young dude who likes buses, Eddie Stobart, scrap metal, mechanics, bus tickets, London and the Bus Museum. Some of the conversations that Sara recounts on her blog bring proper laugh out loud moments, typical teenager moments. One of my favourite such examples was this:

“LB saw the dentist at school today…”

“Wow! Did you LB?”

“Yes Mum.”

“What did they say?”

“Open your mouth Mum.”

Sara’s blog is absolutely rammed full of such snippets, it serves as a record of their lives, an online diary I guess. Except Sara goes above and beyond the niceties and amusing anecdotes, she shares her thoughts, hopes, dreams, concerns – it’s a truly remarkable insight into parenting, family life and living with autism. LB had autism, and lately epilepsy, but this blog isn’t about that or any other disability labels, it’s about the highs and lows of living with a young dude with such a brilliant perspective on life.

It is a compelling read, and as someone with an a background in Special Ed I loved Sara’s blog because it painted an honest, realistic, witty and humorous account of life with LB in it. Sara and LB’s stories touched me, amused me, were so good at bringing alive the person that LB was, not just the challenges he faced as a result of his disability. I wish LB was the feature of this, my 50k th tweet just in his own right, just for his brilliance and awesomeness. Horrifically he is the subject of this post because him and his Mum have taught me yet more about death and dying, loss and grief.

In July last year, LB, an eighteen year old man in his prime drowned in a bath in an NHS treatment centre. The truly gut churning reality is that his family weren’t happy about him being in the unit, indeed Sara voiced one of her biggest fears in a blog post in May, The Unit: Day 63:

The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe.  I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.

It makes me feel sick reading that and knowing what then happened to LB, Sara and their family. Seven months after LB’s death, Sara is still tirelessly fighting for answers; to find out and understand what happened; to ensure that no other family ever has to face the loss that they have. It is beyond comprehension to me that she should have to fight, and that in this society those responsible haven’t already been held to account. Grief is such an all encompassing experience, it’s 15 months since my Dad died and I still don’t feel like I am firing on all cylinders. The notion that LB’s family should have to try and shoulder loss, fill an LB shaped hole, and keep lifting their heads as the (metaphorical) blows rain down on them, makes my skin crawl with the injustice of it all. I simply don’t know how Sara does it.

To bring us back to this post, I wanted to use my 50 thousandth tweet to draw your attention to this situation, to this remarkable woman, her beautiful son, but also to what you can do to help. Sara is raising money to cover the legal costs of representation at LB’s inquest. Yes, on top of all the fighting for answers, she also has to fight for funds. This is where you can come in, you can visit LB’s Fighting Fund and buy some postcards or prints of his art work. That’s right, you too can forever own some of LB’s brilliance, more to the point you can then join the virtual record of where LB’s Bus postcards have travelled. You can see the LB Bus map here.

LBBusVancouver

LB’s Bus postcard with a Vancouver bus, shared by Anne Townsend

For those of you who still insist on ignoring death, that’s your call, but I don’t feel that I can, or would want to. In the words of John Donne ‘Any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee‘. Kate Granger and Philip Gould taught me a lot about preparing for death and facing fears that we so often choose not to voice. Sara Ryan has taught me so much about living with the unimaginable. Her resilience, tenacity and dogged determination to get answers for her son, and so many other people at risk of being lost in a system, is beyond inspiring.

Taking responsibility

January 19, 2014 6 comments

I’d like to share a story from my past, I’ll try to cut the detail and make it brief.

When I was thirteen or fourteen I volunteered for a week in a local play scheme for kids with special needs. Run by social services to this day I can’t remember how I knew about it, or got to go along to it, but attend I did and one thing that happened shaped me in so many ways. I’d always been interested in difference and disability and had very few qualms around the youngsters with their varying needs. Consequently I ended up hanging out with a teenage boy the same age as me who we’ll call Bill who the others were a little wary of.

Bill used a wheelchair, had poor muscle control which meant he often had his head strapped in, was non verbal in the traditional sense but had some sort of voice computer at home (which was a bit like the future to us then) and occasionally had quite scary sounding coughing fits. Most of the kids attending the ‘play’ scheme were more mobile, and more verbal, and there wasn’t a lot going on for Bill, so we spent a lot of time together. I can’t really remember too much about it (we’re talking about twenty years ago) but I remember feeling like it wasn’t very age appropriate (Bill was smart, I could tell he was smart by his reactions to me waffling on, and by the note that would accompany him in each day with his thoughts about the day before) and I can also remember feeling bored, for myself and for him. It was about the time when I had no idea what I wanted to do with my life but was probably still harbouring thoughts of a career as a special ed teacher (what I thought I always wanted to do), while having recently discovered psychology and I can also remember being intrigued by the very cool (and a little bit quirky) OT that came in every couple of days. So I’ve no idea what Bill and I did but I can imagine it was fairly random.

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The one day I do remember was when we had minibus transport arranged to go down to the beach. This was great for the other kids who spent ages running around on the sand, throwing balls, making sandcastles, but for Bill and I this was yet another slap in the face….we were expected to hang with the adults on the promenade, dodging the pensioners out for their stroll, being generally bored. Until with a little too much time on my brain I indulged my mischievous streak and asked Bill if he’d had enough and fancied going for a run. I’ll never forget his smile and the blink of his eye (quick for yes, kept shut longer for no), I double checked whispering knowing I was being naughty. Yep a slap on his tabletop tray indicated we were to make a run for it…..and so we did. Off down the promenade as fast as a relatively unfit teenager, pushing another teenager in a wheelchair could go.

There were shouts from behind telling us to stop running and walk, but the laughter from Bill up ahead spurred me on and we pretended we couldn’t hear. We ran on, and on until we hit a stone and a raised paving slab and the inevitable happened, his wheelchair tipped over, I fell to the side and the shock kicked in. The adults got there as soon as I’d righted myself and I was given a right (well deserved) dressing down. They righted Bill and he didn’t look good, the elbow of his jumper was torn and his tray table had sprung up in the collision bashing him in the face. As the adults were fussing around him he looked at me and winked, and I promptly burst into tears (of relief I think) and got told off again.

The trip to the beach ended at that point, there ensued great fuss as the kids were rounded up and back to the bus and Bill was dropped home instead of going back to the centre. I had to sit in the minibus all the way back as the adults bitched about the incident and my behaviour and fussed about Bill and wondered whether his Mum would take him to the hospital or doctor. I felt sick. That aching sick when a ball of iron is sat in the bottom of your stomach, and worse still the ache of knowing you were responsible and had brought this on yourself. I went home that night feeling awful, explained what had happened to my parents and got another rollicking, this time from my Dad. I said I didn’t want to go back there and it goes without saying that was out the question, it was my mess and I’d be made to take responsibility for it, I’d be back there the next day if it meant my Dad frogmarching me to the door.

I cried myself to sleep that night and woke up with the leaden stomach again the next day. When I got there I was taken aside by a more senior member of staff, who to be fair was measured in her telling off but still quite clear that I was responsible. The worst thing was I couldn’t see Bill, he wasn’t parked by the door like he’d been every other day, and I was told he’d not got the bus in that day. I was told to make myself useful by playing with some of the younger kids, then five minutes later the door opened and a woman I’d not seen before wheeled Bill in. He looked like he’d been through the wars, he had a massive bump on his forehead and a graze on his nose, but I got the biggest smile. The unknown woman hurried into an office with the senior person and I left to go say hello to Bill. I remember saying how sorry I was and trying to not get upset and him holding my arm and chuckling, that turned into a coughing fit….and at that moment I was called into the office.

I just wished the floor would open up and swallow me, I was struggling to hold it together and was completely confident that this unknown woman would also be about to bollock me. Except she did a remarkable thing, she asked if I was Bill’s friend George, and when I said I was she gave me a bear hug. To cut a long story short the unknown woman was Bill’s Mum, he’d been going home each night telling her about me and the night before he’d told his Mum that this was the best day he’d ever had at the scheme (he’d been a regular since he was little). Battered and bruised and with his favourite sweatshirt torn, he’d apparently not stopped laughing while telling his Mum what we’d done. She said she’d tried to tell him off for encouraging me but that she couldn’t. She’d driven him in that day because she wanted to thank me, for treating Bill as Bill, and for enabling him to do what any other kid his age would do, including getting hurt!

Now I’m not for a minute, even to this day, claiming that what we did was the right thing to do; of course the outcome could have been far worse and I’m lucky that Bill didn’t do himself (or rather I didn’t do him) some sort of serious injury, but the lesson it taught me wasn’t one about breaking rules, or being personalised, or having fun. It was one about taking responsibility. If it had been up to me I’d not have gone in that day, the shame and guilt and responsibility felt so bad, I wanted to hide from it; but no, if there was one golden rule in our family it was that you take responsibility. That actions have consequences, and that if you mess up, you take responsibility, you apologise and you make sure it never happens again. For years I had a photo of Bill and me taken that day, it was carried around with me, pinned to numerous walls and pinboards above desks; I loved that photo and I hated it – Bill looked battered, but also defiant and had *the* biggest smile in his eyes, I looked a bit solemn and sheepish and guilty….as indeed I was. Somewhere along the way it got lost, I’ve not seen it for years, and unfortunately I didn’t manage to keep in touch with Bill – I think about him often and wonder what happened to him and his wonderful Mum, and am desperately aware of the positive impact they had on me.

Why am I sharing this with you? Partly because it’s a little of my history and I think it’s a nice example of how sometimes I greatest fears aren’t realised, and that taking responsibility and actually being held accountable is a good thing; but also because it’s been at the forefront of my mind as Sara Ryan and her family battle to find out what happened to her beautiful son Connor. I’ve read Sara’s blog about life with Connor or LB (laughing boy) for some time and the recent entries are heartbreaking, well they have all been since he died in July, in an NHS facility. Sara has managed to find words to share an immeasurable pain, to educate us who take that journey alongside her and I’ve physically felt that leaden ball in the pit of my stomach several times when I’ve read it of late. I feel sick, shamed and shameful that we live in a society where this happens, and no one is brave enough, or human enough to say sorry, to take accountability, to apologise unreservedly. Connor lost his life, it’s the least that could be done.

This morning Sara shared some of her thoughts about how it could be different; I think they’re worth a read for all of us, it’s time to take responsibility:

NB Make sure you scroll in the widget to see all the nine tips.

In defence of the selfie

December 20, 2013 5 comments

Short, random post for you all. The selfie (word of the year for 2013) has been getting some schtick lately, not least because Barrack Obama decided to take one at Nelson Mandela’s funeral. There’s a whole other blog post right there, but I’ve been thinking a lot about selfies, what they represent, and whether they’re a good or a bad thing.

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I hate having my photo taken, have never really been a fan. As a small child I was very shy (up until I went to secondary school, I know, I know, hard to imagine), but I was and I hated making eye contact and when I shook off my shyness I never really got past the hating having my photo taken thing. I’m fairly average in this regard I’m sure, I obviously have some highly elevated self concept of what I look like because my most frequent response to a photo, any photo is one of surprise. My internal monologue usually goes something like this:

Thought 1: Oh, oh okay, well it’s not *the* best but I suppose it could be worse

Thought 2: Ohhhh dear god, look at the chins, hair, belly rolls, bingo wings, rugby thighs* etc etc etc (*delete as appropriate depending on season, clothing, bodily state)

Thought 3: Delete, delete, delete….oh hang on X looks really nice, guess it’s not all about me.

These three thoughts usually occur in the space of a few seconds, we’re not talking deep reflection here. Occasionally there are pleasant surprises, where the light, or the photographer, or the scenery, or the healthy eating plan have all gone as they should and collided in a magic pot of brilliance. That’s rare though.

So what has this got to do with the selfie then. Well the selfie allows us take a photo, edit the light slightly, project something that we’re somewhat happier with, or at least delete the twenty images that aren’t so great and save the one that is. It is all the things that people complain about, egotistical, a projection, to some extent inaccurate, self indulgent. Yes, yes, yes. However it creates a record and it also creates somewhat more comfort in front of the lens.

I’ve become a much bigger user, and fan, of photography (and yes I sully the genre by including selfies within it) in recent years. Decent camera on my mobile has made a great difference to the number of photos I take, that and the purchase of my first proper adult camera. What I’ve realised in the last few months is that most of my selfies or pic never see the light of day, but that doesn’t stop me having them as a record, and loving them for that.

This record becomes unbelievably important when you’ve lost someone close to you. I am so grateful for the photos that I have of my Dad. He was never shy in front of a camera, we’ve hundreds of him, few serious, mostly fooling around and I love them. I’ve not got half as many of me and him as I would like, and that’s the reflection really. For all people criticise the selfie, if it allows you to capture a moment then it’s a very precious thing. One of my favourite photos that I do have of my Dad and I was taken a few months before he died, at the start of our roadtrip to Wales to visit granddaughter number two when she was a few days old. The photo is a generic, man and woman in car photo to anyone else. It’s not a perfect image of either of us, I don’t particularly like many of the elements I flag above within it, but, and it’s a big but, it captures something for me. Dad just discharged from hospital, topped up with blood following a transfusion, full of anticipation and adventure. It was a role reversal of the many, many times Dad dropped me to Wales and the last trip we took anywhere, and the reward so special.

IMG_0931So I implore you this Christmas, take photos, take selfies, hell take photos in the car!!! You may feel a bit self conscious, you may not like the results, you may detest what you look like in photos, but trust me it’s a great thing to be able to look back and remember, and all the flaws fade into insignificance when you can’t take any photos any more. Happy snapping.

 

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