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.

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3 thoughts on “Day 53: The golden M (iddle) #107days

  1. I’m not sure I can put it properly into words, but I am struck by a contrast of what you have managed to achieve with 11 days notice by just getting on and doing it, compared to the way the NHS and other statutory agencies operate, with their policies, processes, pathways, panel meetings, risk assessments, attitudes, assumptions….. their list of reasons not to achieve anything is endless. You just rolled your sleeves up and got stuck in, with a spirit of community, integrity, honesty and justice. I think it used to be called “taking personal responsibility”, something that the statutory bodies have simply forgotten how to do, and maybe that’s part of the reason as to why they are in the mess they are in, and incapable anymore of honest debate and accepting culpability.

  2. Pingback: Versions, power and duplicity | mydaftlife

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