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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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 1: Postcards of Awesome #107days

Yesterday we launched #107days of action to bring about #JusticeforLB and today is Day 1 and we’re focusing on Postcards of Awesome. Postcards of Awesome sees us collecting at least 107 (more if there’s interest) postcards that share what is awesome about a person with a disability. LB was one awesome dude and we know that there are other awesome dudes and dudettes out there, we’d like to share them with the world.

If you are a person with a disability, or the parent, brother, sister, friend, colleague or carer of someone person with a learning disability, then this is an activity for you. We would like you to send us a postcard with your dude/dudette’s first name and what it is about them that makes them awesome. It can be any postcard, we don’t mind, as long as it includes lots of awesome.

We’re starting today by featuring two dudes. One is Luca, who is 10 today:

Luca

Luca loves The Rolling Stones, Pink Floyd and The Killers, the dodgems, the beach and ice cream, and hates being kept waiting and traffic jams. Last year his Mum @fnafilms took Luca bowling and he kicked the ball down the lane. What a dude. You can read more about Luca in this special birthday blog post his Mum has written.

Another dude we’ve heard about is Reece, we had a postcard from his mum and another from his sister:

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Reece has had epilepsy since he was 12months old. He loves his little therapy dog Scooby and his favourite subject at school is physics. Reece wants to be a computer game designer when he leaves school and spends all his time on his computer. When diagnosed with autism he was relieved to know why he stood out at school. He says he’s not disadvantaged everyone else is…. as he’s got supersonic hearing and a brain like a sponge. Reece is the most loving and kind hearted person you can meet. Laura says ‘Reece is awesome… he teaches me something new every day, sometimes interesting, sometimes not so!’

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So those are our first two dudes who feature on Postcards of Awesome but we need many more. We’ll do something to share the postcards once we have them, most likely is that we’ll organise an exhibition of them and take photos and share them online. So please do get involved, we’ll challenge misconceptions one by one. Please send your postcards to:

Postcards of Aweseome
My Life My Choice
The Jam Factory
27 Park End Street
Oxford
OX1 1HU