Day 100: JusticeforLB hits Glastonbury #107days

Day 100 was adopted by Dan, Rebecca, Ruby and Rosa. We’re delighted that so close to the end of #107days there is an opportunity for more people to learn about LB and celebrate his life, this time at Glastonbury #Glasto2014

We got to know Sara, LB’s mum, initially through her research and writing, chats at conferences, inviting Sara to speak at conferences we have organised and in various parts of the world at Disability Studies conferences. We are sure people know this but Sara is a really respected researcher in the field. She does in practice what she writes about in articles: inclusive and participatory research. Especially, her work is know by us for foregrounding the important role played by researchers who are also mothers of disabled children.

For example, her paper  ‘Busy Behaviour’ in the ‘Land of the Golden M’: Going Out with Learning Disabled Children in Public Places, was a real gift shift for us: especially the line where she talks about the community ‘not doing odd’. We loved that phrase and have used the paper in lots of our teaching and writing. (Here is a link to the paper).

We also read Sara’s blog and were struck by the humour and affirmation of LB and his family. It was a joy to read. And then LB died. We continue to read her blog and recently Dan had the pleasure to catch up with Sara in person. This was bitter-sweet, of course. We were there for the Manchester partnership conference and the reason we were there, of course, was because of honouring the #JusticeforLB campaign. We wished we were meeting for different reasons. LB did not deserve to die. The reason he died says so much about the disabling society that we live in and the violent institutions that continue to fail LB and all the other dudes. We wondered, together, if our research really matters anymore. Can academia contribute anything to contest these conditions of disablism? On reflection, we think that research/ers and the academy can do much to challenge disablism but this can only happy if we work collaboratively and in alliance with organisations of disabled people and families of disabled children. It is also about using broader methods of communication, not simply academic papers.  Sara’s blog has been a shining example of this, reaching audiences and getting people to understand difference productively.

Social media is helping to raise public awareness of disablism and what we have seen with #JusticeforLB campaign is a global galvanising of like-minded souls who are not prepared to accept what happened to LB without fighting back. And so to our adopted day of the campaign: which we thank Sara, her family and the campaign for allowing us to adopt. Sara has written extensively about how much humour and joy LB gave. In recognition of this we want to use our time at Glastonbury festival to publicise JusticeforLB. We ask everyone to look out for our flag:

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We will be there with our daughters Ruby Haf Lawthom Goodley and Rosa Cariad Lawthom Goodley (pictured with the flag above). They have been really affected by LB’s news and have organised to make loom bands to sell at Glastonbury to further raise money for the campaign. We have also bought a 15 feet long flagpole and hope to get JusticeforLB captured by the BBC coverage. In addition, we hope that other festival revelers will ask us about the flag and we look forward to telling them that LB was a cool dude and what happened to him should NEVER happen again. So look out for it folks: just don’t expect to see it during the Metallica set. We will, though, make sure we get a picture by the cider bus: we think LB would like that.

If you are at Glastonbury and see the #JusticeforLB flag, or flyers, or Dan, Rebecca, Ruby or Rosa, please send us a pic. We’d love to share in your Glasto experience.

— Dan Goodley (@DanGoodley) June 26, 2014

Day 96: Oxford Bus Museum #107days

Day 96 was adopted by Brigid Greaney and Kathy Liddell. They wanted to do something with some dudes and dudettes to honour LB and connect with one of his favourite places. Here’s why they got involved:

Like many others who have supported the #107days of action campaign we had never met LB or his family but were both following Sara’s blog, which quite frankly was often the highlight of certainly my day. So well written, funny, inspirational, I would devour it word for word and would frequently recite chunks of it to anyone who would listen regaling the antics of LB, even forwarding it on to my husband who became a convert himself. Then that fateful day. Will anyone ever forget that posting on July 4 2013? 18 words that turned the lives of a family upside down. We felt shock, rage, despair and we had never even met them… we couldn’t even begin to comprehend what they must be going through.

As mothers of young ‘dudettes’ with severe learning disabilities, one of who also suffers from epilepsy we are both well aware of what it is like to have to entrust our young adults to those who deem to know best. A fine balance between letting go so they can develop some independence but wanting to be involved so we can help smooth the path before them so that those inevitable challenges don’t seem quite so insurmountable. As parents we all want the best for our children so why wouldn’t we want to work with those also entrusted to support and care for our loved ones. 18 years of parenting doesn’t just stop overnight as I well know. I’m also a parent to a 21, 22 and 23 year old and am still very involved in helping them make decisions so why wouldn’t we still want to do so for our 18 year olds who need that extra support. Isn’t that what good parenting is all about? So to read that LB who so obviously adored his family, loved life to the full and enjoyed nothing more then making people laugh had died in the care of others was both frightening and heart wrenching!

Here’s what they decided to do:

Like many others we wished there was something we could do to help… but how do you make a difference to a family whose lives were torn apart by what we now know to be a preventable death in a supposedly caring and supportive environment? When the #107days of action was born we knew we had to support it somehow and wanted to do something that was meaningful to our young people, something that they could relate to and something that LB would have appreciated.

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So yesterday we took a group of our young dudes and dudettes to visit one of LB’s favourite places, the Oxford Bus Museum in Long Hanborough. One of the things that came across in his Mum’s blog was LB’s passion for buses and all things transport and the enjoyment he got from visiting these places over and over again. Despite living nearby most of our young people have never been here before so we hope that by bringing them here, even though they will not have the pleasure or privilege of meeting LB they will be able to walk in his footsteps and see some of the things that were meaningful to him. And who knows… maybe just one of them will become as passionate about transport as LB and if that’s one of his legacies then his unnecessary death will not have been totally in vain and his family will have the pleasure of knowing that LB has left his mark in the best possible way.

Day96Bus

 

Usually with these posts we don’t report on the success of an action because they’re taking place on the day (there may be more we can do re capturing them, more of that later on after #107days and we’ve had a wee break from blogging for summer). However, Kathy and Brigid’s trip happened yesterday which means we know how successful it was, we have the photos and they also sent this lovely covering email, the comment about the staff made my eyes leak a little:

Attached are a couple of  photos from our trip to the bus museum today. It was a glorious time – the staff were fantastic and put on a bus ride for us which was a great success and more importantly the kids loved it – including my own daughter who had a fab time going in and out of all the buses. So it achieved in a small way what we wanted it to do and introduced our kids to a place much loved by LB. More importantly the staff there remember him obviously very fondly and were really chuffed today to find out that LB stood for Laughing Boy. Thank you for allowing us to be part of such a worth while campaign! Kathy and Brigid

As ever, the thanks are all ours.

Day 92: Inclusion East and the Missing Sock Bus #107days

Day 92 was adopted by Inclusion East. Here’s what they did, and are doing, for #JusticeforLB and #107days:

The members of Inclusion East are a small,committed bunch of people with complex needs, their families and good friends. In June our monthly Directors meeting was devoted to thinking and talking about Justice for LB.

We were keen to be up to date with what is happening with the campaign. Who is doing and saying what but more importantly

a) What were we doing to add our voices to the outrage, sadness, injustice that led to the very need for LB’s campaign?

All this is very keenly felt as we are families of people who live with autism, epilepsy and complex health and communication needs.

b) What were we doing practically to speak up, challenge ,include people and prevent future disaster?

We took stock and made our list which included:

  • Active Tweeting
  • Mentioning Justice For LB at all meetings, conferences and consultations. Long List!
  • Particularly raising awareness of good epilepsy support at conferences and workshops and yes, on twitter.

Then we adjourned to The Missing Sock which is a funky, Inclusive hostelry in Cambridge. It was there that we plastered The Big Red Party Bus with our home made #JusticeforLB posters.

Deep thoughts and a lot of laughs for Laughing Boy.

Day92

Day 66: Woodcrafting buses #107days

Day 66 was adopted by Sharon, Heather and the Oxford Woodcraft Folk. They shared LB’s story with their young people on an evening a week or so ago, this is what they had to say:

Woodcraft folk is the cooperative children and young people’s movement. In Oxford there are grass roots groups for young people age 3-18+. We are committed to promoting inclusion, respect and social justice.

The young people of East Wind Pioneers (aged 10-13) were moved by the #JusticeforLB campaign and were able to show their compassion and support through these drawings. We hope you enjoy them!

It has been particularly heartening to see the contributions, support and compassion of young people in today’s activity, and yesterday’s from Ohio, and in several other days. We live in hope that they will grow into young adults who live in, and insist on a more fair and equal society, but we really shouldn’t wait and leave it all to them, we need to keep improving it now.

Day66

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 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

Postcards of Awesome April14

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 33: Fulfilling ambitions #107days

We’re coming up to a third of the way through #107days and we are delighted to share that a number of LB’s ambitions have been met, so Day 33 is focusing on fulfilling ambitions. This weekend Sara wrote a post reflecting on LB’s future and the lack of ‘loss of potential future’ narrative; one thing we all know is LB’s love of London and of buses, indeed it is his artwork of a London bus, that has become the visual symbol of #JusticeforLB. You can read Richy Rich’s words to learn more about the context of this, especially the last paragraph.

So we know LB wanted Connor Co and last week Ally Rogers found it in Urbana, Illinois:

ConnorCo

Connor Co wouldn’t have worked without a fleet of vehicles though. To quote his Mum from another post introducing the fleet, which kicked off with the help of Mrs Buhweet pulling a few bus strings:

The dude had massive, steadfast, consistent dreams around ConnorCo and a fleet of vehicles. There are now three (3??) double decker school buses dedicated to him. Just makes me cry. With more to come on the fleet front…

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LBBus_Day33_2

So the LB ripples will continue for many years to come. Hundreds of school children will travel on those buses in the coming weeks and months, and we hope that LB will live on in a small way with every one of them.

There is another small movement trying to ensure that the lessons of the preventable nature of LB’s death are learnt across the globe, through the challenge to ‘Draw a Bus for LB’, heavily supported by Beckie and a number of people on our facebook page.

Atawhai Brownies Drawing

Atawhai Brownies in New Zealand drawing a Bus for LB – thanks to Karen

So far we have 54 buses, so we’re one over half way, but we still would like another 53.

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So if you have children (or adults) on holiday at the moment (you don’t have to be as creative as Becky and her family), but please do encourage them to draw a bus, then take a photo and post it on our facebook page, or tweet it to us, or failing all else you can email it to us. If drawing or colouring isn’t your thing then there are still a number of ways in which you can get involved with #107days, check them out here, and thanks again for all the support so far.

GraphicsOnTheGO

 

Day 9: Beach Art #107days

Day 9 was adopted by @GallusEffie for some beach art. While it has been suggested this would be an ideal environment for the Commissioner Ostriches to bury their heads, none were spotted in Kirkcaldy that day. However there were a few doggies… GallusEffie has resurrected her blog to share her day, which was rather special, you can read the full story here. Brought forward by weather deterioration and parental wedding anniversaries, congratulations on 50yrs together May and Archie, we are sharing today the beach art for LB. If you’re inspired by GallusEffie’s creativity then feel free to get making sand buses too, and send us your snaps.

We have asked each person to share why they are getting involved with #JusticeforLB and this was GallusEffie’s response:

I first “met” Sara and LB on Twitter in 2012 and we soon chatted passionately and amicably about our common loves and hates about being mums to incredible dudes with additional needs. I remember in particular a conversation about filling out the ludicrous DWP form to apply for ESA…”can you pick up a pen?” “can you set an alarm clock?” – another instance of proving inability to the authorities that we’ve been doing since the get go…and it was a relief to talk/rant with Sara because she understood my exasperation exactly.

I won’t go into detail about the #JusticeforLB campaign here, I feel utterly inadequate to the task of capturing anything but the tiniest flavour of horror, outrage and disgust that LB died a preventable death…but there’s also the feeling of tenacity, forensic analysis and solidarity amongst the #JusticeforLB posse.

I like that line, tenacity, forensic analysis and solidarity, we really have and we’re not going anywhere until things improve for #JusticeforLB and all young dudes and dudettes. Anyhow, you want to hear about what GallusEffie got up to:

I’m not an artist but enjoy having a go at creative things and thought it would be good to draw a big bus on one of our many beaches in Fife and send in a photo. As it turned out the beach I wanted to use had a lot of cranes, diggers and security fencing at it (they’re improving the sea defences) and much of the beach was out-of-bounds to the public…so we went much further along, parked the car and headed down. There was a difficulty in that this bit of the beach had a lesser slope leading down to it, so the photos were hard to take from a height. Thankfully, Mr Effie had a set of stepladders in the boot and he was a very capable artistic director and photographer! We were “invaded” a couple of times by dogs, including a snarly wee shite called Chicco, and had a lovely chat about LB with a couple from Coventry up in Fife on holiday, turned out they have an adult daughter with speech and language difficulties and the dad drives the Tesco bus for a living….love, love, love that coincidence.

SandBus1

You’ll need to visit GallusEffie’s blog for all the photos and a step by step guide to recreating your own bus.

SandBus2

These are just two to give you a flavour. It really is worth checking out all of them. ps You can get the postcards on the bus here.