Making LB’s Justice Quilt #JusticeforLB

We’ve a guest post today from Janet Read to coincide with the launching of the amazing quilt that emerged from #107days.

I’ve just seen a photograph on Twitter of George Julian taking LB’s Justice Quilt to the Lancaster conference where it will see the light of day in public for the very first time. If you were travelling north by train today and saw someone carrying a very large multi-coloured sausage, it was probably George.

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This reminded me that I’d better get a move-on with the post I promised Sara I’d write about the making of the quilt. I started it the other day but I was feeling a bit inhibited and it all turned out rather stodgy and boring. And the quilt (and the process of making it) is about as far from stodgy and boring as it’s possible to get.

The inhibition came from feeling that it’s hard to write honestly about something I’d had a hand in making, without fretting about looking as if I’m blowing my own trumpet. The thing is, there’s no getting away from the fact that I think the quilt is bloody marvelous and so do the other makers, Janis Firminger, Margaret Taylor and Jean Draper. It ‘s everything we hoped it would be and much, much more besides. It’s given us immense joy every time we’ve worked on it, looked at it and talked about it. We’ve been incredibly moved by it, too. But of course, the whole point is that it wasn’t really down to us at all. The main reason for its magic is that a whole bunch of you people who care about what happened to Connor and who want to change things for other dudes, rose to the occasion and set to. We said that we wanted to make something that reflected the campaign and its mood and energy. Well, you outsider artists sure didn’t need telling twice! The pieces that you sent us to work with were more arresting, inventive, moving, angry, irreverent, colourful, thoughtful, beautiful, affectionate and informed than anything we could have hoped for. They came embroidered, appliqued, crayoned, painted, felt-tipped, crocheted and knitted. They sometimes arrived with apologetic notes saying you hoped they were good enough. Good enough? Yes! Yes! Yes! More than! Every single one!

At the beginning, only Janis, Margaret and I were involved. We consulted Sara and George, did the post, asked people to take part and waited. Would anyone respond and if so, how many? We had no idea. We told ourselves that small could be beautiful but to be honest, ‘LB’s Justice Tea towel’ might have felt a bit of an anti-climax. On the other hand, where would Sara keep something the size of a football pitch? Then the contributions started coming in thick and fast– the patches and the gifts of thread and fabrics. I got the best job of opening the post and keeping tabs on what we’d had. It was so exciting. Apart from the individual contributions, we had the workshop at Cardiff Law School which Lucy Series wrote about on 107 days and the Messy Church in Kent organized by Beckie Whelton, also recorded on 107 days. I didn’t know what Messy Church was but I do now. I can tell you it sounds a whole lot more fun than the Sunday School I went to!

Shortly into the project, Janis, Marg and I found ourselves needing some help. Confession time now: we three are stitchers but we’d never made a quilt before in our lives! Sorry. I can almost hear a sharp intake of breath from all the proper quilters out there because they know better than most that The Great British Bake Off doesn’t have the monopoly on THE TECHNICAL CHALLENGE. So, we asked for a leg up from my big sister Jean whose day job is art textiles and who knows a thing or two about quilting and all sorts of other stuff involving fabric and thread. She loved the idea of the project and was busy stitching patches. After being bombarded daily with beginners’ quilting questions, she offered to join in.

One of the best times (and there were many good ones) was the very first time that we laid out all the patches in the same place. When we stood in front of this vivid mass covering my dining room floor, it took our breath away. We knew quite simply that we had something very special to work with.

And that’s about the top and bottom of it really. The end of May was close of play for contributions but of course, they came in for a while after that. What else would we have expected from a load of stitching rule-breakers? The patches came in all shapes and sizes, too, and were probably the better for it -though I did threaten at one stage, to stitch a patch that said’ Social justice activists can’t measure 4X6 inches’. When all the patches were in, we put the rather complicated jigsaw together ,and spent the summer machining, quilting and hand-stitching The People’s Art Work , as we sometimes called it. The final stitch went in a week ago.

JusticeQuiltfull

I don’t know how many patches there are because every time I started counting, I was distracted by something that I’d not looked at properly before. Living with the quilt has been a pleasure, and running our hands and eyes over your lovely work for the past three months has been an unforgettable experience. We’ve handled it nearly every day and that means that scarcely a day has gone by without our thoughts turning to Connor, his family and the other dudes. We’ve talked about them a lot too. We hope that the quilt will have the same effect on other people when they stand in front of it. Someone asked me last week when we were doing another one and the reply was that we’re not. LB’s Justice Quilt is a one-off for Connor, the dudes, Sara and her family.

Our heartfelt thanks, then, to all you patch-makers, protest stitchers and outsider artists. It ‘s truly brilliant that you created so many strong and beautiful fragments of resistance in response to something so terrible. What gifts you gave!

We couldn’t publish this post without acknowledging ourselves the absolutely phenomenal beauty of the Justice Quilt. There is so much love stitched into the quilt, which somehow perfectly captures the crowdsourced magic of the #107days campaign. The quilt would have certainly been a pile of patches if it wasn’t for the extreme dedication of Janet, Janis, Margaret and Jean, and we will be forever grateful to them for their work.

The quilt is officially being ‘launched’ at the #CEDR14 conference today (10 September 2014) and we will be looking for a number of venues to host the quilt over the next year. Given how delicate it is we don’t want it travelling every week so we’ll be looking for venues that can display the quilt, while also protecting it. If you have contacts in venues, organisations, galleries etc then feel free to leave a comment, drop us a tweet @JusticeforLB or send us an email with your suggestion and we’ll collect them in and make a touring plan. We are really keen that as many people get to see the quilt as possible, so we’ll keep you all posted on these plans.

Thank you to all our patchers, your contribution to bringing JusticeforLB and all young dudes is stitched into the fabric of this campaign.

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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:
DH
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 86: Communication and being human #107days

Day 86 of #107days was adopted by Jenny Morris. Jenny blogged early on in the campaign and has also been interviewed by journalists for a number of pieces that relate to LB. Jenny’s expertise and knowledge is very valuable and today she offers a blog post with her thoughts and knowledge on communication.

I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that – at a time when so many aspects of social policy and social attitudes are going rapidly backwards – we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems.  If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place.  I’ll come back to this point.

Day86_CommunicationPatch

The campaign is also making a quilt, made up of patches sent in by many different people.  The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.

‘Communication is at the heart of being human’.  Sadly, some people will react to this statement by saying ‘But some people cant communicate and you’re therefore saying they aren’t human’.

Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call ‘severe learning disabilities’.

Communication is about recognition of a message being conveyed – it is a two way relationship and we should be paying far more attention to the ‘recognition’part of the relationship.  Instead of saying ‘he can’t communicate’, we should be saying ‘I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do’.

How many times have you heard someone say (as I heard only a few days ago):  ‘X has severe learning disabilities and can’t communicate at all. She loves swimming and lots of different kinds of music’? My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s ‘challenging behaviour’.

The statement is both a denial of the human right to communication and – ironically – at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.

Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person.  Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.

When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person ‘doesn’t communicate at all’.[1]  We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:

You have to wait a long time for him to react.  Although if he’s feeling negative about something he soon lets you know – he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme. It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.

Imagine if everyone ignored you when you spoke or consistently misunderstood what you said.  Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you ‘scream and shout’?

One of the things I try and do with most of the posts I write is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past. Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: ‘We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK’.

Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties.[2]Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties.  Alison wrote:

Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.

We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described – in another publication from 20 years ago – as dominated by an Apollo culture[3]:

Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role. Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.

These organisations cope well with stability but struggle to deal with major change. There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.

This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context.  We have systems which result in people entering and remaining in institutional settings because housing isn’t available.  We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination – there are many examples of this but Mark Neary’s experiences are just one.

A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences. We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a ‘ninja task force’ which puts people with learning disabilities and families in charge and works to ‘develop local, individual supports for people moving out of these services’. A key issue will be the availability of housing – though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision.

One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties.

In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs.  It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.

[1] Morris, J. 1998. Still Missing? Vol 1: The experience of disabled children and young people living away from their families. The Who Cares? Trust.

[2] Wertheimer, A. ed. 1996. Changing Days: Developing new day opportunities with people who have learning difficulties. The King’s Fund.

[3] Sanderson, H. et al. 1997. People, Plans and Possibilities: Exploring person centred planning. Joseph Rowntree Foundation.

Day 59: Time and Place #107days

Day 59 was adopted by Janis Firminger, Margaret Taylor and Janet Read. This is why they are supporting #JusticeforLB and #107days:

We wanted to adopt Day 59 because like many others, we feel angry and sad about LB’s death, the manner of his dying and the truly terrible grief that his family have experienced as a result. Sara’s writing makes us want to really see Connor, to understand what a remarkable person he was and to appreciate how he enriched the lives of those close to him. Her blog and the responses of others have also laid bare the myriad ways that the lives of learning disabled people and their families are blighted by carelessness, neglect and disregard, by the limitations placed upon them by others and by assumptions about how little they have a right to expect and hope for.

The social media activity has also revealed a different world, however: one that is altogether more inspiring and is populated by people who do not accept these tawdry taken-for-granted ideas. The blog posts, tweets and the rest capture a lot of love, affection, fury, sharp insights, analysis, good politics, protest, brilliant stories and decent humanity all unified around LB’s story and the determination to get justice for him and for others with learning disabilities.

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Janis, Margaret and Janet are all currently exhibiting their work at their Time and Place exhibition.

Day 59 is part way though our textile exhibition, Time and Place 2014, in London and one of the pieces in it was made in memory of Connor.

We are also in the process of making LB’s Justice Quilt as a way of celebrating a remarkable life and raising awareness for the Justice for LB campaign. We are asking people to contribute by making a small patch to be sewn into the quilt (see below). We have a vision of a large, strong, colourful, quite disorderly quilt that reflects the mood of the contributions people have been making through social media activity. We hope that our adopted day will encourage more people to make a patch for the quilt. If you’d like to get involved please see how here.

Day59Patches

 

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.