Maintaining momentum after #107days

A month now already since the ‘end’ of #107days and we’re delighted that the momentum continues. With little/no effort from those of us in the #107days shed (which is lucky as the shed has been largely empty for the past four weeks). So here’s a taste of some of the post #107days actions… in no particular order:

Chrissie Rogers (and Eamonn) ran the British 10k London Run in LB’s name with remarkable cheer and good humour. Wonderful to see the photos.
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Continuing on a running note, Natasha @notsurejustyet is celebrating her 40th birthday shortly and has decided to mark it by running a 10k race to fundraise for LB’s Fighting Fund and SNAAP.

In another one of those remarkable coincidences or happenings that have sprinkled magic dust over this campaign, we received the following message and photo on our facebook page:
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We are very grateful to all these healthy fundraisers.

Away from the exercise track, My Life My Choice held their monthly Sting Ray night club evening in LB’s memory with a raffle and ticket sales for the fund and LB’s favourite songs on the playlist. It was a brilliant evening with punters from across Oxford dancing their socks off all night. Amy Simmons wrote a wonderful and moving song titled Laughing Boy:

How could the world keep spinning?

Why does this house no longer feel like home?

Who are you to judge the value of his life, claim the cost is far too high?

Deciding who should live or die?

I no longer feel like smiling,

I’m surrounded by friends, but still I feel alone.

His life was never yours to take! My heart was never yours to break!

The choice was never yours to make!

I will not lay down my sword, for the world can ill afford,

To grow war weary, tired or bored, I cannot go back on my word.

For the battle must rage on, until the battle has been won,

Until justice has been done, for a life that’s been and gone…

Nothing lasts forever,

But eighteen years is hardly time at all.

I fight because I have to, there’s no happy ever after,

My world no longer filled with laughter.

My world no longer filled with joy…

Laugh on, laughing boy.

In other fundraising news, Pru has created chocolate buses for sale at her online chocolate shop and is selling them for £1.07 plus P&P, with proceeds to the fund.
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Other edible fundraisers included a cake sale by Rosa, Ruby and friends:

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…..before the flag was washed and Dan Goodley and Katherine Runswick-Cole continued the global march of the LB flag.

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As Katherine emailed ‘Just to say that the response to #JusticeforLB was amazing in Melbourne and Singapore and it was so exciting for us to watch the #LBBill emerging on twitter while we’ve been away’.
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Over the last month, awareness raising has also continued at a pace. Chris and Becky were tweeting from the IASSID Conference in Vienna and Max presented on #JusticeforLB at the #PDXGathering in Portland.

Closer to home #JusticeforLB was introduced to the JSWEC audience by a number of supporters including Hannah, Liz and Jo.
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Jackie also worked her magic on the Social Care Curry punters and arranged a donation for #JusticeforLB.

Sue Bott, of Disability Rights UK also raised the experience of LB through our amazing animation, with those at their Independent Living conference #ILVision

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LB made it into Hansard, a significant and heart breaking milestone:
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In other news, we are submitting a chapter about #107days and #JusticeforLB to a new edited book about social media and disability published by Ashgate. Animated and committed discussions are happening around the development of a Private Members Bill (currently ‘nicknamed’ the ‘LBBill’) to ensure that people have the right to live in their own home (an idea extraordinary with its simplicity). A facebook group has been set up to capture early discussions around this.

Finally, the Justice Quilt is being finished by the magical team of stitchers led by Janet Read and rumours are, it will be launched at the forthcoming Disability Studies Conference (9-11th September at Lancaster University) before being displayed at three other UK destinations across the next 12 months, yet to be decided.

So, as you can see any hopes of #JusticeforLB becoming quieter or less visible post #107days are entirely unfounded. Thank you all for your continued support.

Day 105: Textile art, provider challenge and a headshave #107days

Day 105 forms our hat-trick of three way adoptions for the week, it is shared by Briony, Mark and myself, George.

First up is Briony, who had this to say about supporting #JusticeforLB:

I wanted to be a part of #107days and the #JusticeforLB campaign after reading Sara’s blog. It was heartbreaking to read and difficult to walk away from. It also hit me hard because my youngest daughter has autism and at nine years old I am aware of the realities of trying to access the support that she needs. It almost always becomes another battle with the system. You get tough, your priorities change and the little things don’t matter anymore. In fact, she is probably the reason that I am finally doing what I’ve always wanted to do.

Briony made the most beautiful wall hanging for #107days, read on for more:

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The textile piece that I have made for #107days is centred around a quote from one of Connor’s favourite songs, ‘National Express’ by Divine Comedy and includes a London bus representing his love of buses and the Twitter bird representing the positive impact that social media has had in gaining support for the campaign. I chose this particular quote from the song because I felt it best captured the spirit of #107days and the positive actions people have taken to try and secure a better future whilst fighting for justice for LB.

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As it developed into quite a big piece I realised that I could do more than just share photographs of it through social media. I contacted Louise who runs a creative social enterprise called Scrap in Sunnybank Mills, Leeds and she was happy to display it for me in their cafe during 107 days next to Connor’s story. Many different people pass through Scrap so it seemed like the ideal place to reach a new audience and spread awareness of Connor’s story and the campaign.

Whilst making it my youngest came up to me and said, “You’re always making LB stuff!” I started to prepare for what was coming next thinking, Oh here we go! Just because it’s not about you! But then she went on to say, “You should start an LB sewing support group and make buses and signs with his name on…and cushions.”

This insight, together with her unique sense of justice (be it in the form of Dog the Bounty Hunter!) leads me to think that she could definitely teach Southern Health a thing or two.

Next up today is Mark Lever, the Chief Executive of the National Autistic Society (NAS). Mark wanted to adopt a day to write something to challenge himself, and other social care providers. Here’s what he had to say:

Social care providers and the regulators are coming under the spotlight more than ever – and why shouldn’t they?

When a family makes the decision to place someone they love in the care of a ‘third party’ they are vesting more trust in that decision than any other. Local authorities making a placement are rightly concerned that they are spending significant public money on a good service. Everyone has an interest in ensuring the person being supported is well cared for and achieves the best outcomes possible.

If we’re all striving for the best outcomes, why is there not a more open discussion of the lessons learnt when things go wrong?

I am not talking here about the systemic institutionalised failures we witnessed at Winterbourne View. Rather, the incidents that occur even within services run by respected and reputable organisations working to do the best they possibly can for the people they support. As someone running one of those organisations, I can confirm that, of course, they do happen.

Working in social care is very challenging – and simply isn’t the right job for everyone. The people who choose to make it a career are dedicated and passionate about their work. They are certainly not doing it for the money where, for many, the pay is barely more than the minimum wage. To do the job well, they need an incredibly strong temperament and values base.

My concern is that, as services come under increasing pressure, including financial pressure, people being supported risk being seen as commodities and ‘good’ support can mean ticking the right boxes. The values base is in danger of being lost and forgotten as organisations strive to be seen to be doing the right thing and maintain contracts.

As more pressure is placed on providers, we should feel confident that we can share our occasional failures openly so that we, and other providers, can learn and constantly improve.

Instead, we’re currently too often on the defensive. This can lead to us being the opposite of open and get in the way of making changes for the better. We’re necessarily and properly held to account, given we care for often very vulnerable people at public expense. We also have to acknowledge that we’re in a competitive environment, where one organisation’s failure may be another’s opportunity. But this should not lead to a blaming culture, shut in on itself.

I’m not arguing for a ‘stuff happens’ attitude. Rather, greater openness and honesty should reinforce the values base and build on a wider commitment to challenge all service failures with energy and rigour. We owe this to parents, carers and the people we support if we are to live up to the trust they have placed in us.

Here’s what Mark has pledged to do, in addition to offering this blog post:

My commitment to action to support the #107days campaign is to convene a roundtable of 8 to 10 service providers to explore how we as a sector can share more openly the lessons learned from failures in service delivery. The aim will be to learn more and, as a consequence, to support and inform the work to reduce the risk of similar events occurring again.

Finally today, it’s over to me, George. Here’s why I wanted to support #JusticeforLB and #107days:

I’d like to suggest that I considered my involvement in #JusticeforLB, that it was something I deliberated about and mused over, that I was reconnecting with my early career in Special Ed, that I was giving something back, but the reality was it was nothing of the sort. I’m supporting #JusticeforLB because I couldn’t live with myself if I didn’t, it wasn’t so much a choice, as a compulsion. I was one of Sara’s many legions of fans who regularly read her blog about life, and I felt sick to the pit of my stomach on July 4th last year when I read this.

It was 361 days since my grandfather had died, and 231 since my Dad had died and I felt like I’d had enough death to last a while. But for LB to die, this wasn’t right, he was a fit young man, spending time in a specialist unit, with experts, to help make some life choices and changes. He couldn’t die. For the last year I’ve oscillated between disbelief and anger, and my internal pendulum has yet to stop swinging and come to rest. What Sara, Rich and family have had to face, is like the yin to our family’s yang. We had the knowledge that Dad was terminally ill, and the truly amazing support of our local hospice’s Hospice at Home service, that allowed him to die a peaceful and dignified death; LB was fit and well, his death was preventable, and those responsible have done their best to shirk all responsibility ever since. If you wanted to compare and contrast a bad death experience, and a good death experience, Sara and I would be a good place to start.

In February, before the independent report into Connor’s death was published, I was appalled to read Sara’s account of how they were being treated by Southern Health. I ended a blog post ‘They [LB’s family and friends] 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’.

A month later, nothing had improved. Worse still I’d been a key instigator in creating a social media storm around the publication of the Verita report, and I suddenly felt like if we couldn’t make progress and turn this into something good, then I’d have just added to Sara and Rich’s angst and pain. Rather than waiting for someone else to step forward to make it stop, I felt compelled to act, to climb into Sara’s virtual cave, and share her pain. This was only sealed for me when I had the chance to meet Sara and Rich for the first time in March.

As for #107days, if no-one with a remit to sort this stuff out was going to make things easier for LB’s family (and to be fair CQC were making efforts early on, but social care and providers were deafeningly silent), then I’d do my best to connect with Sara and try to make some sort of sense out of this madness. Even before the Minister publicly stated that the Winterbourne JIP (established to improve learning disability provision after Winterbourne View) was an ‘abject failure’, there was a growing consensus of such. So what could we do? We could try to improve things, get stuck in and do what those paid to do it evidently didn’t (don’t) consider their remit…so #107days was born. It emerged out of a desire to mark and witness LB’s life and death, to improve things for other dudes, to raise awareness and get people talking and sharing and collectively responding, and most importantly acting.

So what am I doing?

I’m shaving my head!

To raise awareness and funds for the local hospice, Rowcroft, that supported our family, and for #JusticeforLB. You can see more of what I’ll be losing in the video that follows:

So far I’ve raised £5,270 but I’d love to raise a little more, so please do donate if you can afford to. You can pledge any amount, and if your organisation would like to know more about how to use social media campaigning you can even pledge for a half day workshop with Sara and myself. Plug over.

I just wanted to finish by saying what a truly inspiring campaign #107days is. Each and every person who has adopted a day, or pledged an action, or shared their experience, has made it what it is. It has been an absolute honour to be involved and I’m left in awe at what you can achieve when you set your mind to it and don’t worry about who gets the credit, or the blame. I feel confident that the power of our collective, will continue to improve things for all dudes, in LB’s name. Thank you all for your support with that.

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.

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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.

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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 52: Afternoon tea #107days

Day 52 was adopted by Pippa Murray from ibk initiatives in Sheffield. Here’s why Pippa decided to get involved:

We wanted to do something for Justice for LB because my own teenage son Kim, another beautiful cool dude, died as the result of severe, intractable epilepsy. His death could not have been avoided and I feel privileged to have had the experience of supporting him to die with dignity. I felt outraged when I heard of the tragic circumstances of LB’s death.

Disabled children and young people have so much to give to the world and yet we live in a world that, for the most part, fails to recognise their worth. ibk (which stands for ‘inspired by Kim’) is an organisation set up to raise the voices, aspirations and quality of life of disabled children, young people & their families. We get to hear of many terrible stories but this is one of the worst. We want to be part of a movement to stand up against such discrimination and ignorant thinking. We are touched by LB’s death and moved by the courage and compassion of his family to lead this campaign. Thank you for letting us be part of LB’s legacy.

We are delighted that Pippa and ibk are supporting #107days and #JusticeforLB. If you are near Sheffield today and have time they’ve guaranteed a warm welcome.

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This is what you could be involved with:

Our tea is for disabled children, young people, family, friends & Personal Assistants. For this special occasion, we are raising awareness about Justice for LB; and having a mosaic artist come to help us put together an art piece which everyone can take part in. We are including the letters LB in the piece to remind us of LB’s life, untimely death and to keep us focussed on our aim of citizenship for all. (We will send you a photo of the completed piece). Our teas are lively, chaotic events attended by families and their friends.

We have over 80 people booked to come on Saturday, but there is room for more. The tea and mosaic making takes place at St Mary’s Church Community Centre, Bramall Lane, Sheffield, S2 4QZ. We start mosaic making at 4pm; tea will be served at about 5.15 and we go on chatting and mosaic making till 7pm.

As we all continue to try and piece together some sense from the senseless loss of LB, a mosaic and the chance to meet and share with others, seems like a very symbolic and fitting act. We hope that everyone attending has a great time and we can’t wait to see the end result.

 

Day 39: Still time to get involved #107days

A fortnight ago Sara blogged on all the amazing things that had happened in #107days so far. Since then we’ve been blown away with yet more amazing actions, I’m not going to recap them all here because we’ve a ‘half way’ blog post in the offing that will do that. If you’ve not managed to follow daily I’d highly recommend looking back over the daily entries to this blog that highlight the remarkable range of thoughts and actions of so many brilliant people supporting #JusticeforLB.

This is a very short post, but one that is designed to draw your attention to the many ways in which you can still get involved and support #107days. We are very, very nearly out of days, and we’ve had to double up on some dates. We have had one or two people who have had to pull out due to unforseen circumstances so there is still a small chance of adopting a day, especially if you can be flexible on dates, so do still get in touch if you’d like to adopt one.

There are a number of other ways in which you can support #107days including the following:

Conferences, workshops and learning opportunities

Learning disability studies in academia – Monday 9 June – Manchester (Day 82)

Keeping me at the heart of care – Thursday 12 June – London (Day 85)

Our Voices, Our Choices, Our Freedom – Thursday 26 June – Leeds (Day 99)

There are also a number of local seminars being organised at universities and internal development time within organisations. We will feature these on their adopted days, but are happy to include details here too if they are open to the public.

Fun and laughs

My son’s not rainman – Thursday 15 May – comedy performance, tickets available (Day 57)

107 Red Balloons – Sunday 18 May – come join in (Day 60)

Party Night – Saturday 31 May – everyone welcome

Spend, spend, spend

Limited Edition LB Bus Pencil Cases – all pre-ordered pencil cases were snapped up in next to no time, but rumour has it there might be more…

LB’s postcards and art – available to purchase

Act now – do something

Drops of brilliance – have a think, identify a person or act that has helped, and share

Draw us a bus – draw, snap and share

LB’s Justice Quilt – you just have to send a patch and our stitchers will do the rest – they need to be received at the PO Box by end May, so get stitching

Postcards of Awesome – you still have time to send us a postcard and join this bunch that My Life My Choice handed over to us his week

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In a week of frustration and disillusionment captured by Sara here and here, it is a remarkable tonic to see so many people stand up and be counted, to reject the ‘system’s’ poor excuse for change, and to take action themselves to improve things and bring JusticeforLB and all dudes.

Thank you, each and every one of you.

ps Don’t forget we now have three flyers: 1) with campaign info 2) with info and space for your event details 3) with info and details of how to donate. We also have a blog banner that you can download onto your blog to raise awareness.

Day 8: Growing awareness #107days

Today is a shared day, between Zinnia and Kay. Zinnia is a horticulatural social enterprise, based in East London, that works with anyone with a support need. They were one of the first groups to get in touch when we launched #107days and they will hold a day when volunteers plant stock and then a % of any profits made will be donated to LB’s fighting fund, established to cover legal costs. Also importantly when this stock is sold, Zinnia will share information about LB with it, growing awareness.

The second person who adopted Day 8 was Kay. She is attending the Lincolnshire Autistic Society Annual Conference today #LAS2014. She is taking some of LB’s bus postcards with her. Here’s why:

I’m sharing the #justiceforlb story because I too have a ‘Young Dude’ and my heart breaks just thinking about the whole scenario, as I cannot even imagine how difficult it must be for LB’s family.

It is just unbelievable what has happened.

LB and his family were seriously and tragically let down by a system and people within that system, that are supposed to be there to help and support.

No words are enough, so perhaps sharing the story will highlight the tragic, preventable events and hopefully go some small way to ensure this ever happens again in the future.

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Kay and Zinnia are both helping us spread the word and grow awareness (see what I did there). If you would like to get involved with raising funds or awareness then please let us know. Thank you.