Day 77: Six degrees of separation #107days

Day 77 was adopted by Liz who has offered her thoughts on six degrees of separation, and how we can use it to support #107days and #JusticeforLB:

I started reading Sara’s blog after meeting her on Twitter through following somebody else who knew her. That is how Twitter works – we follow folk who follow other people we know and who we realise we have something in common with.

Sara was someone I wanted to know because I was doing PhD research around aspects of why the special needs domain is so problematic and I read some of her published work that resonated with me. In particular, she helped me with a minor dilemma when my PhD supervisor told me not to use the word ‘meltdown’ and Sara was able to point me to article she had written with ‘meltdown’ in the title.

As I read Sara’s blog, like many others, I was amused, challenged and inspired by her accounts of life with LB. When life got tricky, I was reminded of the struggles we had experienced with my son when we engaged in arm-wrestling with the authorities to get him the support he needed. My son was fortunate; he got a place in a specialist residential school where he was enabled to develop academically and personally. He is now living independently and studying for a foundation degree. But things could have been so very different when he was out of school and threatening to kill himself…

For LB and for Sara and her family things worked out differently. LB was a much loved young man who did not receive the care he was entitled to from those paid to care.

Last year, 4th of June marked the day of my PhD viva. It seemed appropriate to adopt the anniversary of that day as my contribution to #107days because if I hadn’t embarked on that postgraduate journey, I would perhaps never have met Sara and never heard of LB.

But on the other hand, I might have done. Some years ago somebody came up with the idea that if you take any two people on the earth, they are no more than six acquaintances apart – there is more about it on Wikipedia.

Day77Six_degrees_of_separation

By Laurens van Lieshout (User:LaurensvanLieshout) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)%5D via Wikimedia Commons

When I started to think about how to use today, I started thinking about who I knew that might not have heard about LB. What would happen if I told them LB’s story and asked them to pass it on to others? I started thinking about people I was no longer actively involved with, but I had known in the past and wrote a few letters – and I got some replies, including a couple from Bishops and one from a member of the House of Lords, each promising to speak to others.

So the challenge today to me – and to anybody reading this – is to go through our address books and identify people who we have spoken to about LB. They may be work colleagues (past and present), people we socialise with, former partners, whoever… Once we have a list of names, send an email, an LB postcard, a letter, a text – whatever is appropriate for that person – and tell them about LB, a much-loved young man who died a preventable death because those paid to care didn’t care. Then tell them about other folk, young and not so young, who suffer unnecessarily and about parents who worry about what will happen to their children if they are no longer able to care for them. Most importantly, tell them we can make a difference if we spread the word and demand change. Ask them to tell their friends, colleagues, neighbours and folk they meet in the pub or on the bus about LB and ask them to tell others too.

If we all tell somebody today about LB, we can get lots more people making a noise and demanding more caring and responsible support systems so that more young men like Connor Sparrowhawk don’t die. Let’s make sure Connor didn’t die for nothing! 

Over to you now. Get talking, emailing, sharing….

Day 74: Letting the light in #107days

Day 74 was adopted by Fiona, an eLearning designer and video producer from Northern Ireland, who is interested in how we might use technology and media to reduce inequality and injustice. This is what she had to say about why she’s supporting #JusticeforLB and #107days:

A few months ago, a couple of tweets from a lady called Sara Ryan were retweeted in my Twitter timeline. Shocked by what I read, I looked at her profile and made my way to her blog. Two hours later I was still there, reading Sara’s blog. It was fantastically joyous and devastatingly sad in equal measure.

Many years ago, I lost my brother to cancer. He was 13 and I was 15. Unlike Sara’s son, Connor (aka Laughing Boy = LB), there was no incompetence involved in his death. But it was at a time when cancer services for children could at best be described as primitive. When you overhear a GP telling your mum that she’s being selfish when she’s feeling afraid to give her child morphine, you know there is something not quite right.

So, when Sara described trying to push the horrors away so that she can remember the good times with LB, it resonated with me. I was hooked into Sara’s story and wanted to become involved, and help, somehow.

And grief is a strange beast. In the immediate aftermath of a death, it almost protects you – numbness, shock, shutdown, self-preservation, darkness. As time goes on, chinks of light get in. You try to remember what was good about the person and use it to drown out the horrors. For years, I remember not being able to see my brother’s face, then one day, I could.

So today I dedicate this blog to letting the light in. In my own family, they couldn’t talk about my brother – It took them almost 10 years to put a headstone on his grave. His name is rarely mentioned, even now, some 25 years later. I loved how in Sara’s blog, she shared stories of LB, and little snippets of conversation. How Sara is coping with her pain and grief is a true inspiration.

This is what Fiona has to say about #JusticeforLB and all dudes/dudettes:

As well as seeking justice for LB, I love how the #107days campaign is highlighting the general crap provision and support for people with learning disabilities in our society. There are so many inequalities around people with learning disabilities. I continue to be shocked when I read statistics on this, for example – more likely to die younger – on average 16 years sooner than everyone else. If this was any other section of society, there would be people on the streets! You can read more about the inequality research here.

The very people we should be protecting the most in society are often discounted as an ‘inferior species’ not worthy of our full attention.

But improving life for our brothers and sisters with learning disabilities is not all about statistics. It is about all of us. In her blog, Sara talked about people who worked with LB, the Charlie’s Angel story made me smile so much. Sara also talked of how LB’s brothers and sister and their friends seemed to find an easy way of happily being together. If this can happen at a family and local community level, then there is no excuse for wider society getting it wrong.

Nurturing the Potential

We all need help to reach our potential. Sadly, if you have learning disabilities, this doesn’t happen in the way that it should. I’ll leave you with a story from a dude that I know. Eoin is 23 and lives near Derry in Northern Ireland. He tells us about his love of learning about World War II and his work as a volunteer in local events. Eoin is thriving and has had several short work placements in local businesses who have welcomed and supported him. Here’s Eoin…

The video is taking a while to sync within the post, but you can watch it on YouTube here.

We’re grateful to Fiona, and to Eoin, for sharing their experiences with us. Our hope is that everyone will receive the support they need to reach their potential, otherwise, to be blunt we’re talking about lives half lived. Surely we’re past that?

Day 70: Shadows of action #107days

Day 70 was adopted by Yvonne Newbold who wished to write this blog post to share some of her own personal reflections on LB and Sara’s experience, and the similarities to those of her and her son Toby. This is why Yvonne wanted to get involved:

I’ve never met Sara, nor did I ever meet her son, Connor (LB), yet the shock I felt when I first heard about his preventable death is something that will live with me forever, and which has developed into a searing sense of outrage and anger as I watch the NHS handling of this tragedy unfold.

You see, I also have a severely learning disabled son, who also has severe autism, and I also recently had to entrust his care to others due to my own ill health. His name is Toby and he is 20 years old. There is a real sense of ‘this could have been, or one day might be, our story’. I also know what it’s like to be fobbed off, discredited and abandoned by the NHS as Sara has been since LB’s death, because when you are a parent of a different child, these things seem to happen all the time.

Although I have never met Sara, there is an affinity which exists between parents of children with disabilities, an understanding that transcends normal communication, a sense that we each simply ‘get it’ in a way that the so-called expert professionals very rarely do. To me, LB, Sara, Toby and I, along with every family coping with the issues that disability brings, are all part of the same tribe, a family of sorts. What happens to one of us is personal; it hurts all of us.

This is what she has to say:

Something rather insidious has happened to our society in the past couple of decades since LB and Toby were born, and being a parent of a son who is reliant on the Statutory Services, I’ve watched it spread and become acceptable from a front-row seat.

A culture of fear has taken hold among those working within our health, social care and education services, a fear that paralyses them and prevents them from doing the job for which they are paid; which is to protect and support the most vulnerable members of our society. Instead this culture of fear has turned their priorities upside-down. They now seem to do all they can to protect and support themselves and each other, and maintain the reputation of the organisation they work for.

When organisations have their funding and future survival of services tied to the vagaries of abstract key indicator targets to the extent that we have allowed it to happen, there is a huge vested interested to paper over the cracks, bury any mistake that happens, and create systems that cover their backs rather than reach out to help those in most need. When this trend is also happening alongside a society becoming more litigious year on year, the focus becomes even more self-interested.

They have to keep up appearances make everything seem excellent and tickety-boo, with no room to admit that human errors sometime happen. The people who work in these environments are no longer able to make autonomous decisions; we have all seen the growth of the interminable meetings where even the smallest things are now decided by committee. Joint decisions are always watered down and become half-baked shadows of the actions really needed. No one is able to stick their head up over the parapet anymore and say something sensible, because they are all too scared. Using one’s own initiative is frowned upon but how can you truly care for someone in any meaningful way without being allowed to sometimes think on your feet?

No one takes personal responsibility in these organisations anymore because they aren’t allowed to. Meanwhile young people like LB die, because if no one takes personal responsibility, so no one can apply common sense, and it’s also, of course, no one’s actual fault.

The unspoken mantra is ‘cover our backs, cover our backs, cover our backs’. The staff feel compelled to collude with management to hide any weaknesses or failings. Reputation is king. Any weakness or failing that comes to light is minimised, or side-lined or hidden away. Truths are spun and twisted, any insider who tries to speak out is pilloried as a whistle-blower. If failings cannot be neatly filed away, they sometimes find a scapegoat, and publicly pillory them as well. No wonder the staff are so frightened.

The upshot is that staff bring that fear into every encounter with those in their care. The emphasis changes, again to protect themselves. For every few minutes they spend with those they care for, several more minutes must be spent writing down everything that happened during those two minutes, just in case something ever comes back to bite them on the bum sometime in the future. What they write doesn’t always reflect what did actually happen during those two minutes either; it has to be skewed to fit the text-book version of what would sound best.

So all the reports are written, all the boxes are ticked, and they can produce their swanky glossy brochures telling all and sundry how marvellous their service is. Their backs are turned away from those who really matter and meanwhile LB drowns, and countless others continue to be short-changed.

Our young people deserve better, and things must change for the better, too, and fast. The staff who work for these organisations don’t want to work in a culture of fear anymore either. The vast majority care passionately about making lives better, but their hands are tied by fear.

Mistakes happen, we all know that. When they do, parents like Sara deserve the level of respect that can only come from complete honesty, truth, compassion, empathy and sincere apologies. It is the only acceptable way to behave. Particularly in LB’s case, when that mistake was one that had been waiting to happen for far too long.

As Yvonne says in her post, this mistake had been waiting to happen, but not just that, now it has happened LB’s family and friends are left to raise funds to cover legal costs to bring Justice for LB. So, rather than use an image of LB for this post, I’ve used the party tickets, for the party night happening this weekend, Saturday 31 May and there is still time to get tickets and come along, all support gratefully appreciated.

LBPartyNight

 

Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Jazz&Amanda

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 62: Learning Disabilities Elves get to work #107days

Day 62 was adopted by Nikki, John and André, three of the somewhat magical beings behind the Learning Disabilities Elf blog. If you’ve not come across their blog before you really should check them out, they contain a wealth of information. Each week the elves get to work and scan new evidence from websites, databases and journals, and identify what is important to professionals working with people with learning disabilities, in health or social care. When we asked them why they chose to support #107days and #JusticeforLB this is what they had to say:

Nikki Newhouse

When I was asked to write a short explanation of why I wanted to get involved with the #107days campaign, I sat for ages, blankly staring at the computer screen. All I could think of was why anyone wouldn’t want to get involved. Contributing to a tiny piece of the huge #107days campaign armour was just such an obvious thing to do. Yes, I am a mother and yes, I know Connor’s mum Sara but, like I say in the blog post, Connor’s death has affected a lot of people in a lot of unexpected ways and I am one of those people. Bizarrely, after years working in the mental health field, raising awareness, advocating change and fighting for fairness, something ‘clicked’ in me after Connor’s death. I guess I have come to understand what the responsibility of making a difference really involves. Change isn’t some abstract ‘thing’, ‘out there’ that just ‘happens’; it is the slow but steady accumulation of lots and lots of voices, tears, words on a page, media noise created by people like you and me, that builds into an angry, indignant, desperately hopeful roar. This is day 62 of 107 but these 107 days are just the start.

John Northfield

Like Nikki, it was easy to say yes to getting involved in the #107 days campaign to make what small contribution I can. Thinking about what the Elf could bring to the campaign, I was very aware that whilst we are all about pointing to what the evidence says about good support, often that evidence may not be considered ‘gold standard’ – we are not able to report lots of meta-analyses or systematic reviews, and there are lots of concerns about research methodology. But despite that, there is good evidence of what works and examples of good practice. The guidance available to professionals is voluminous, and the key messages about what needs to be done are becoming very clear –personalised support, positive behavioural approaches based on clear functional analysis, the provision of active support and respectful partnership with families. All these things are necessary building blocks for good services. The pace of change remains frustratingly slow, but we hope we can make what little contribution we can by continuing to provide easy access to the evidence.

André Tomlin

Connor’s tragic death is yet another wake-up call to a health and social care system struggling (and sometimes failing) to cope with the complex needs of people with learning disabilities. We have heard so many heartbreaking stories over recent years of people who have not received the care they deserved and of simple mistakes that have had fatal consequences. Our aim with the Learning Disabilities Elf website is to bring reliable research to the health and social care professionals who need it most; to help them improve their practice and in turn to improve services for patients. There is no magic wand to change the system and prevent future harms from being committed, but there are lots of examples of good practice that we can promote to staff who care for people like Connor on a daily basis. Ultimately, the system is still a long way from providing the kind of care that people need and deserve, but if we make evidence-based research a core part of that system, then we will give health and social care professionals the knowledge they need to provide better care.

In the spirit of making a practical difference they scoured the evidence and Nikki wrote a post for Day 62 that focuses on what the evidence says about people with learning disabilities and unmet need.

Day62NikkiElf

Here Nikki introduces the post:

The reaction to Connor’s death has been huge. Outrage and desperate sadness have fuelled what is ultimately an overwhelmingly positive, proactive and determined campaign for change. #107days of action started on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. Today is Day 62.

I work with Connor’s mum, Sara. It was unusually busy in the office, the day that Connor died, with many of our group’s normally nomadic researchers home to roost. As Sara ran out of the office, phone glued to her ear, none of us had any idea what was coming. As a research group dedicated to giving a voice to people’s experiences of health and illness, we are all used to doing our very best to maintain a healthy distance from the often sad and disturbing stories we hear. This was different and Connor’s death has changed us all.

The ups, downs and general hilarity of life with Connor are well-documented by Sara in her blog, as is the pathway to Connor’s admission to the local psychiatric learning disability unit as his behaviour became increasingly challenging. Her accounts of his growing agitation and anxiety and the monumental frustration and effort involved in navigating the mental health and social care system are at once moving and infuriating. The post on the day he was admitted to the unit is bitterly poignant, tinged with both relief and disappointment, completely unaware of the horror on the horizon. Following his admission to the unit, we see Connor being funnelled down a heavily-scripted, non-patient-centred path, and Sara’s blog posts make one thing startlingly clear: a marked deterioration in Connor’s state of mind and sense of self, leading to him being sectioned, medicated and misunderstood. Having been neatly categorised as “learning disabled”, Connor’s epilepsy went ignored. This myopic approach ultimately caused his death.

However, this is not a soapbox rant or naïve call to arms. The unit in question has been closed to new admissions, the legal fight for justice is trundling along. Rather, I asked to write a blog for one of the #107 days because I want to be part of the growing army trying to jump-start a conversation about why it is that our learning disabled and mentally ill friends, siblings, parents and children are still so marginalised by our health system. Despite our apparent familiarity with words and phrases like depression, Time to Change, patient-centred and equitable in our public discourse, we still treat people with learning disabilities and mental health problems like second class citizens. We all know that mental ill-health is common, affecting one in six adults at any one time and we also know that people with learning disabilities have an increased likelihood of developing mental ill-health, with figures ranging from 25-40%. So can it be that research consistently highlights evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment?

Please visit the Learning Disabilities Elf blog to read Nikki’s post that summarises the evidence, for Connor. Please also join in the discussion, we need to understand why when we have evidence, it is not shaping practice. As ever, all your thoughts are very welcome.

Day 60: 107 red balloons #107days

Day 60 was adopted by Beck from Frog Orange. At 3pm this afternoon everyone is welcome to join them at Shotover (at the top by the car park) to release 107 red balloons in memory of LB. Here’s what Beck had to say about why she wanted to support #JusticeforLB and the #107days campaign:

I wanted to adopt a day as part of the #JusticeforLB campaign for a number of reasons. I started reading Sara’s blog a few months before Connor was admitted to the treatment and assessment unit. I enjoyed Sara’s writing, her photography, her sense of humour.

I enjoyed reading about her musings about her family life and the little community we share. It was the only blog I ever requested to have emailed to my inbox. Naturally after Connor was admitted some of Sara’s entries made for really tough reading. I’ll never forget reading the few words she wrote on July 4th 2013. The horror, sickness and sadness I felt was so powerful.

I can not imagine the pain that Connor’s family and buddies are going through.

I was appalled by the non care that Connor received.

I was astonished how Sara and her family were treated during his stay.

I was horrified that Connor was allowed and left to drown in these circumstances.

And I have been disgusted by the way NHS Southern Health have behaved since.

I know Sara and Rich a little, we’ve hung out socially a few times and they have been customers (at Frog Orange) for years. Rich used to come in with Connor, his brothers and sister. He used to carefully herd them around the shop helping them spend their Christmas money.

One of the main reasons for taking part in this campaign is because if you know Sara and Rich at all, you know what utterly fabulous parents they are. They are just so bloody good at the whole parenting thing. It is just TOO cruel that they cared so well for Connor along with his brothers and sister, and within 107 days in the unit, he was gone.

So why balloons? Well, I don’t write a blog that anyone reads and so many wonderful people have written such powerful pieces in defence of Connor and his family. I thought maybe something visual would be good. A little time out in the fresh air thinking about the sunshine that LB brought to his family and friends. And if somebody finds a tag with #107days #JusticeforLB they might google it and spread the word. Let’s hope so.

Day60_107redballoons

Just to be completely transparent (it’s a style we’re deeply committed to), we had a comment on our post and facebook page from Vicky who was worried about the environmental impact of releasing balloons. It is something we have considered, and decided the risks are worth taking, you can read the discussion here.

Please do come along if you’re in the Oxford area and would like to join us and please do share any photos on twitter with the #JusticeforLB and #107days hashtags. Thank you.

Postscript

The super talented Izzi Crowther decided to produce an adaptation of Nena’s 99 red balloons for LB. So much love and so much awesome, here’s to the dude:

You and I, and the Frog Orange shop
Buy a bag of balloons with the love we’ve got
Set them free at 3 o’clock
‘Til one by one, they were gone…

One-oh-seven red balloons
Floating in the summer sky
Connor Co’s aerobus fleet
Go tell everyone you meet

One-oh-seven Shotover Park
One-oh-seven dogs will bark
Lorry lorry super-scurry
Call the troops out in a hurry

One-oh-seven knights of the air
Riding super high-tech jet fighters
LB is a super hero
LB is like Captain Kirk

With orders to identify, to clarify and classify
Scrambling in the summer sky
As 107 balloons go by
107 red balloons go by

107 dreams we’ve had
Every one a red balloon
It’s all over and we’re standin’ pretty
Overlooking Connor’s city

If I could find a souvenir
Just to prove LB was here
And here is a red balloon
I think of you and let it go

Day 58: Different, not less #107days

Day 58 is being shared between two events, as we move into the second half of #107days more and more days are being shared. We’ll keep blogging here and sharing what is happening, it’s just some days you’ll get double your money! Today was adopted by Kabie, Pam and Geraldine.

Kabie, and Autism Rights Group Highland (ARGH) adopted today and this is why:

#JusticeforLB is important because everyone everywhere needs to know what happened to Connor. He was one of our community, he was a vibrant young man who should have been in a safe space; others are still at risk unless everyone starts to listen. As a community we are angry, we want this to be a tragedy that is never repeated. Connors family have been treated callously and without respect. Every member of society deserves to be treated as the person that they are, without prejudice. It seems that right now some people are seen as more deserving of human rights than others, that has to change. Just because we’re different doesn’t mean we’re less. Human rights are for everyone and there should be no such thing as the wrong type of human.

They will use today to raise awareness about Connor and #JusticeforLB at their Autism and Ethics conference in Inverness, being run in partnership with NAS Scotland:

Our conference is all about ethics from an Autistic point of view, the speakers are all Autistic; it’s a conference where we get to be heard rather than just spoken about.

Kabie will talk about LB in her opening session and play the youtube video, ensuring that all attendees know about LB and the campaign for justice. Simultaneously, somewhat further south, there will be another conference taking place. The West Midlands Medical Sociology Group also adopted Day 58 for their conference, Hard-to-Reach or Under-served?: Community and participatory approaches in health research, convenors Pam Lowe and Geraldine Brady had this to say:

We first learnt of Connor when we met Sara at Warwick University where we were all studying for PhDs in sociology as mature students attempting to juggle motherhood and study in the health/disability area. Geraldine’s PhD focused specifically on children and young people with ADHD and Pam has a son with autism. As Sara’s PhD was on parenting and disability our lives and work were all connected to and with each other in different ways.

After completing our PhD’s we all left Warwick to work in different universities, but still occasionally meet on the academic circuit. Geraldine and Pam went on to co-convene West Midlands Medical Sociology Group and in May 2013 we organised a joint conference with Sara and the Disabilities Studies Group. The theme of the conference was the impact on austerity on experiences of disability and illness. By the day of the conference, Connor had been admitted to the Unit. The irony that the last day we saw Sara before Connor’s preventable death was spent discussing limitations and frustrations of disability provision is not lost on us.

This year’s conference is called ‘Hard-to-Reach or Under-served?: Community and participatory approaches in health research’. Those in the health world will recognise the concept of ‘hard-to-reach’ which is a label given to communities that do not have the same access to health services. All too often, this is code for ‘not-complying’ with services, appointments, screening, health promotion etc etc. The alternative ‘under-served’ has been suggested as a better description as the emphasis is on why health services are not being delivered to particular groups. Importantly to us, the focus on community and participatory approaches is about how we work with and listen to people who are often side-lined/overlooked/ignored in health services. The conference papers are about reaching people and groups that are not always listened to in the area of health, including those with learning disabilities.

This is why we feel that it is particularly appropriate to dedicate the conference to Connor. If the Unit had listened meaningfully (so with care), Connor would not have died. If health service providers or commissioners had listened and cared before his admission, he might not have needed to be admitted in the first place. The introduction to the conference will introduce Connor to the delegates and we have included Connor’s postcards in the conference packs, and hope that this will raise further awareness of the tragic consequences of ignoring the needs of all marginalised groups.

Day58evening visitor

We were asked for an image to accompany the text for the campaign website. The image we have chosen is a photo taken by Pam’s son. Jamie’s primary interest is animals and, whilst he might not ever talk to you about it, his passion shines through his photographs. In a way, this is just like the moth captured in this image. It fluttered around in the dark barely seen, but get the right light and its beauty is revealed.

We hope that both conferences go well and that participants join in the campaign for #JusticeforLB and all dudes. Most importantly we hope people will take on board Kabie’s words ‘Just because we’re different doesn’t mean we’re less’.

Day 57: My son’s not rainman #107days

Day 57 has been adopted by John Williams, an incredibly funny man and casual baker  whose blog will make you laugh and cry: ‘John is a comedian and single dad. His son is twelve years old and autistic. He isn’t a genius. His only special power is making his Dad laugh. A lot’. We were delighted when John got in touch to offer his support to the #107days campaign, after all LB is short for laughing boy. LB, whose giggle captured the hearts of so many, so if you’re going tonight (or if you spend the day reading John’s blog – highly recommended) please laugh long and laugh deeply. It’s very special that we have a day of intentional laughter and stand-up comedy within the 107days.

This is what John had to say about getting involved:

I had been following Sara’s blog for a couple of months – it had been recommended to me by a friend. I was struck by the warmth of it, as well as the writing. Incidentally, this was, and still is, my favourite blog post. And then I remember the day Sara posted that LB had died. I remember the numbness that followed the initial punch in the kidneys, this strange feeling of mourning someone who you hadn’t met but you felt in some small way you knew.

As the days, weeks and months followed, and Sara continued to share their story, the treatment of the family by those responsible became difficult to comprehend. It moved from the realms of incompetency to something far more sinister. To this day I am dumbfounded by the behaviour of Southern Health in all this. On every level. They’ve become like the King Midas of healthcare, only in their case everything they touch turns to shite. I can’t even begin to imagine the indescribable pain of losing a child, but their behaviour and inability to take responsibility and even just-bloody-say-sorry is akin to continually poking at an open wound with a stick. Katrina whats-her-face, “Chief Executive of the Year”, bloody shame on you.

I suppose if I’m honest there’s a selfishness behind my getting involved in LB’s story. In many ways my own blog is the “acceptable” face of autism – heartwarming stories of the life of me and my son. At times it seems we live an almost Peter Pan existence, he’s the boy who’ll never grow up, and Dad’s so embroiled in the battle with the education system that he never thinks for one minute about the world beyond it. But LB’s story has brought things into focus. It’s made me confront my own fears for the future. The seemingly terrifying world of Adult Services beckons sooner than I care to acknowledge.

And so for Day 57, and my plans. I’ve written a blog about LB on my website. And tonight I’m performing a show at the Kenton Theatre in Henley that is dedicated to Connor. I’ll share his story, his video will be played and when his brilliant face fills the big screen and the Divine Comedy blares out across the auditorium the audience will be in no doubt as to why he was called Laughing Boy. I’ll donate my fee for the night and sell his postcards in the interval and generally pester and badger people like a great big pain in the arse to get involved and ensure they shout Connor’s name across the rooftops as they leave into the night.

We learned yesterday of the very sad death of Stephen Sutton, an incredible young man who has left a legacy that will live on well beyond his years. Well Connor Sparrowhawk was also an incredible young man, and we must do all we can to ensure his legacy lives on for a long, long time to come.

And so I’ll leave you with the same request I made on my blog this morning. Make a point of telling someone Connor’s story today. Set up reminders on your telephones 1, 5, 10, 20 years from now to keep his memory alive. Let’s ensure his legacy is to lead to lasting change for the young people and adults that follow.

Let’s keep saying his name.

Day57JW

Day 53: The golden M (iddle) #107days

Today is a bit of a ‘breath catching, where are we going, what are we doing and how are we doing it?’ kind of day. Lovely Saba Salman provided an independent view of #107days on Day 47. Here we are writing this post from a most definitely not independent view, with a few reflections on what #107days has become and is becoming. To kick off, I dipped back into my blog to see what was happening with LB this time last year. It was the Land of the Golden M day. The trip to the fast food joint that is friend to families with ‘unruly’ kids across the country. He ordered, scoffed and enjoyed. With no sniff that there were only 53 days left in his lifetime. He should have had at least 14,000, even with reduced rates for living in a country in which this label guarantees a default reduction in life length.

ryan5-163

Anyway, let’s not dwell on that right now. Let’s think about the same set of days, 12 months later. Well. It’s astonishing. Remarkable. Moving. Inspiring. And unlike other campaigns. Well we think so anyway.

It really has taken on a life of its own. This may be because neither of us have any experience in ‘running a campaign’ and we started off with the sketchiest of plans. I dug back through the mountain of emails to find out when the idea began and found this from George on March 8th;

Was thinking we need to share something on outcomes on fighting fund blog and was hoping might be able to come up with 107 days of action – inspired by tweet earlier. Just a thought, idea, action, memory, reflection each day? Maybe? 

Eleven days before kick off. With no funding. No plan. No rules or regulation. Just a desire for action, a commitment to improve things and an army of similarly enraged people who clearly wanted to do something. George set up a spreadsheet and we took to social media.

Day 25 featured a recap of activity to that point, since then we’ve had another 29 days of pure brilliance. There have been creative contributions including musical ones in the shape of First Note in Luton recording a song for JusticeforLB and Louise and Anne-Marie dedicating a choral performance of laments to LB, artistic ones in the shape of buses and yesterday’s afternoon tea and mosaic making, and many more postcards of awesome arriving.

There have been extreme physical endeavours to raise awareness and funds, including 15 year old Madi who kayaked 125miles over four days and Jane who is in the middle of running 107ks. These personal feats are accompanied by the fulfilling of LB’s personal ambitions, with three school buses and a Scania truck dedicated to LB, his very own fleet.

A number of brave souls have shared their personal experiences, or their hopes, fears and dreams for the dudes they care about. These have included drops of brilliance, a celebration of big man’s birthday, reflections on when care goes missing, thoughts on a disjointed system and working within it, a question of trust, some thoughts on advocacy in speaking up and speaking out, and a post on ATUs, autism and anxiety. We also continue to make ripples slightly further afield, in France and Canada most recently.

There have also been attempts to raise awareness and knowledge by researchers and academics at conferences and through their teaching. Topics included art history and legal commentary, the Mental Capacity Act, the essentials of care, the role of people with learning disabilities in sociological research, a focus on institutional abuse and people with learning disabilities, and the violence of disablism. These academic offerings, sit alongside a remarkable response from learning disability nurses and student social workers. A day in the life of… provided useful food for thought on nursing notes and language, the second WeLDNurses chat was held focusing on preventable deaths, and one student social worker decided to be the catalyst for tenants in her placement setting to develop one-page profiles.

The campaign has been such a success purely because of the contributions and commitment people have made. Such diversity and a randomness that is refreshing, not least because it perfectly captures LB’s quirkiness and irreverent approach to life. We are still only half way with much more to come, including more focus on advocacy and activism; a number of conferences, workshops and seminars; more quilting, a comedy night and the release of 107 red balloons. There will be many more blog posts, videos, animation and music produced and celebrated, including a campaign flag at Glastonbury. There are also a number of days adopted for fundraising activity including 107 London buses in a day, George is shaving her head (we don’t do things by half), and the party night to end all party nights.

There is real momentum and determination for change which (hopefully) can’t be downtrodden and chucked into the inertia bucket.

107days

So is it all worth it? We think so. So far we’ve achieved a number of the aims set out in the Connor Manifesto:

  • a Serious Case Review into LB’s death is about to begin and will examine how such poor provision could be commissioned
  • an independent investigation is currently being arranged into all the unexpected deaths in Southern Health’s mental health and learning disability services dating back to 2011
  • one of the remaining #107days days will involve a meeting with our MP, Andrew Smith, and Deborah Coles, CEO of INQUEST to discuss the issue of independent investigations into every death that happens in a secure (loosely defined) setting.

Anyone who would like to dismiss us as using this case inappropriately, can feel free to do so, but we are proud of what has been achieved so far, and committed to the long haul. For too long people have lamented the state of provision for people with learning disabilities, much hand wringing and head scratching appears to have led to a systemic apathy and not much else, with the Winterbourne View JIP recently described as an abject failure by the Minister. Maybe it’s time for the suits in the system to take a long look in the mirror and ask what their own behaviour is affirming in this malignant system. We don’t need more concordats, we don’t need more of those responsible sitting around meeting tables and repeatedly asking people to share their good practice.

We need people to stop and listen to what people are really saying. To leave their prejudices and fears and professional cloaks at the door, and take the time to hear what people are saying, and join them in their journey to improve things. While they’re busy attending meetings and seeking examples, we’re busy making change. We have 54 days to go and most have been adopted, but we can double up on days. We have a number of actions concluding at the end of #107days, and still many ways in which people can get involved.

We want to finish by reiterating Saba’s call to those in authority:

People need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

There is always room on the #107days bus, and everyone is welcome.

Day 49: An academic point? #107days

Day 49 was adopted by the Centre for Disability Research (CeDR) at Lancaster University. Hannah Morgan and Chris Hatton, two of our greatest supporters since #JusticeforLB evolved, organised and presented two events, a lecture on Institutional Abuse for first year students on the Contemporary Social Problems module and a seminar by Chris, Laughing Boy versus the Zombie Institution: Closing the new institutions for people with learning disabilities. They live tweeted the seminar and have compiled a storify about the day here.

When asked why they are supporting #107days and #JusticeforLB, Hannah had this to say:

GeorgeFoxBdg

I’ve known Sara from the disability studies circuit going back to the first Disability Studies conference we hosted here at Lancaster in 2003 and always held in the George Fox building in the picture. Since then we’ve met up at different conferences and events and always at the Lancaster Conference.  One of the things I really value about disability studies is the sense of community that has developed and the pleasure taken from watching people’s work evolve and develop over time. Sara came to the first conference as a phd student presenting ‘I’m sorry, she’s special needs”: explaining learning disabilities in public encounters. As her blog readers will know she has a particular gift for a snappy title and for writing that is engaging, rigorous and thoughtfully. I started following her blog soon after it started often laughed at the early LB tales and sharing her frustration at how little was offered and how little value attached to the dudes in our life.

I saw Sara last year at the Nordic Network on Disability Research (NNDR) Conference in Finland where Sara presented her paper in tweet length sentences. Her mastery of social media was apparent. Catching up outside sessions – in May last year – it was clear things weren’t going well for LB and that the unit was operating in a way that devalued her and their families’ contribution to LBs life. Little did we know then what was to follow.

Screenshot 2014-05-07 21.33.45 Justice for LB seminar 7 May 2014

In his presentation today Chris Hatton talked about the sparkly spiral of shame where us academics merit fourth place after providers, commissioners and regulators. He highlighted the way in which our lives remain as disconnected from the realities of many people with learning disabilities lives and that we (as a group) are just as craven in the face of (illusory?) access to influence and funding. This is true, all academics working in disability studies or elsewhere with disabled people do need frequent cold hard looks in the mirror. We need to remember why we do what we do. For me, and for many of my colleagues – LB Buses postcards have provoked lots of conversations and many offices in the department are resplendent with a buses or colours postcard. It is what – in the words of another disability studies colleagues – ‘keeps us right’.