Week 13: Does awareness raising go far enough? #LDWeek15 #107days

Today we find ourselves in the middle of Learning Disability Week 2015 #LDWeek15. We thought we’d use Week 13 to ask a question which many seem very uncomfortable with, are charities part of the problem? We’re starting off with questioning awareness raising.

So, what is Learning Disability Week I hear you ask?
It’s an awareness week run by Mencap, who simultaneously advertise themselves as ‘the UK’s leading learning disability charity’ and ‘the voice of learning disability’. Quite some accolade to give yourself, and quite a claim to live up to.

Each year for Learning Disability Week Mencap pick a theme for the week and seek to ‘raise awareness’ of the issue in hand. The week has traditionally been in June, although there was a slight detour into August in 2013, but business as usual returned in 2014.

What does LD Week focus on?
Each of the issues that feature in LDWeek are an existing Mencap campaign or priority, so if you were to take a cynical view one perspective could be that they are using a national awareness raising week to raise the profile of their organisation and do work they’re committed to doing anyway. Regardless of that, let’s take a look at the focus for the last few years:

2009 saw a focus on accessible toilets and Changing Places

2010 was equal healthcare and ‘Getting it right’

2011 turned the spotlight on Disability Hate Crime

2012 stuck with Hate Crime; perhaps there was a delay in planning, or no other issues that needed attention given toilets and healthcare were ‘done’.

The CEO at the time stated: “The reason we went back to the issue this year, is because we’re making good progress,” he explained. “We’re making great progress on working with the police in a way that will lead to a steady reduction of hate crime and a tackling of the perpetrators. There’s much more to do, though”.

2013 took a slightly surreal turn about, where presumably having sorted hate crime, healthcare and toilets it was time to celebrate. The August week focused on, wait for it, superheroes!

Who is your superhero? Celebrating families ‘amazing, brave and selfless people’. Which is an interesting way to frame learning disabled people and their family members! We’ll come back to that later.

2014 stuck with a theme of celebration, after all there were obviously no burning issues that needed raising awareness of in these two years.

The billing for the week asked: Do you remember your first? We asked you to celebrate people overcoming adversity, and people’s prejudice and ignorance to experience their incredible firsts.

2015 Bringing us up to date, this year the tone is less party and more traditional with a focus on Hear My Voice and listening:

We’re reaching out to the newly-elected politicians and people in a powerful position to tackle the myths and misconceptions about learning disability that fuel prejudice and inequality.

What format do these awareness raising weeks take?
A quick search on the internet will provide you with a range of approaches to raising awareness during LDWeek, with some grassroots activity across the UK.

That said there is also a bit of a format at play, whereby every year Mencap Head Office beam with pride as they celebrate the success of learning disability week (usually by the Friday on their website or early the next calendar week) that involves:

a) a London launch event or soiree at Westminster
b) a few mentions in the media
c) a new film or media soundbyte to use
d) some airy celebrity promises of support
e) a Charter or commitment for people to sign up to.

Anyone with a rudimentary knowledge of measuring impact would be able to see that these blogs ‘celebrating success’ are focused purely on activity and not on impact or outcomes.

The other consideration is positioning; what message is being shared about learning disabled people and their lives? Are we celebrating them as superheroes? Really? I’ve yet to meet a superhero, learning disabled or otherwise. Are learning disabled people and their families brave, overcoming adversity, pioneering?

Or are they just like you and I. Human beings, wanting human rights. No more, no less.

A question of impact
So all of this activity leads to what exactly? It’s not for us to offer an answer, we’re simply asking the question, but we would like to hear about the impact of such a large amount of focus.

While it is no doubt reassuring to the senior management team to tick a box on the annual strategic plan, and external profile raising never goes a miss, one can’t help but wonder whether all this talk and awareness raising leads to very little change.

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Later this week we’ll take a look at charity accounts and some of the positioning of charitable activity. All thoughts and contributions very welcome as ever, drop us an email if you’d like to blog on this.

Week 9: Art and activism #107days

We start with an apology that Week 9 is having its first blog on a Friday! An all time delayed performance, even for us, however that’s partly because we’ve been out on the campaign trail this week and doing ‘art and activism’ rather than writing about it! Before you delve in to this post we’d like to remind you that Live at LICA have their Family and Community Day tomorrow (Sat 23 May) so pop along to see the #JusticeforLB artwork, join the pop-up picnic and survey the quilt in all it’s majesty. For now, Sara has blogged about the brilliance that was Monday:

On Monday, as many of you will know, the Sparrowhawk Art exhibition took place at the Peter Scott Gallery, Lancaster University as part of their Open 2015 event. Parcels of #JusticeforLB art were sent up north over the past few weeks to create both an exhibition and a political space. Richard Smith, the gallery curator, described what underpins Open 2015;

‘We feel an art centre should be communal and tell us who we are and who we want to be; if not a social movement, it should at least provide a deeper awareness and sense of place. It should have a design that can situate all disciplines together in the search for knowledge and understanding and have at its core the unique process and language of art, which is able to articulate things that cannot be expressed otherwise. During OPEN 2015 we’ll start this journey, exploring what an art centre could be and what it should do’

Sparrowhawk Art was clearly in the right space.

One thing I particularly loved was the way in which the exhibition was created during the exhibition. It started at 10am and we pitched up everything was pretty much on the floor or in boxes (other than the quilt that was being displayed for the month). We became gallery helpers, sticking up the remarkable pictures of the Justice flag at Glastonbury, guillotining a copy of Jeremy Hunt’s letter, thinking of ways of displaying the Justice cardboard (but deftly reinforced) bus and, for Janet Read, doing some on the spot stitching repairs to the quilt.

It was amazing.

Late morning there was wondrous excitement as the Guardian online gallery was shared. So moving, so stunning, so remarkable that the artwork has been created spontaneously and created with love and care.

This also stood out among the gallery team. They were accommodating, sensitive and handled every item with respect. Later, during the panel, Chris Hatton reflected on how unusual this was to witness. Learning disabled people are not typically afforded such respect.

The panel

At 3pm, the panel convened, chaired by Chris Hatton and consisting of Graham Shellard (My Life My Choice), George Julian (#JusticeforLB), Janet Read (Chief Quilter), Dominic Slowie (NHS England) and Imogen Tyler (University of Lancaster).

Dominic (via a video link) described how “the pain, anger and frustration has been reborn into something that’s captured the minds and hearts of people” and how the campaign has grasped practical projects that can make a difference. George emphasised how the campaign is about everyone and how it’s demonstrated that people do care. Graham said that My Life My Choice “knew what it was like to be someone with a learning disability and have something happen to you”. He talked about some of the activities he’s involved in and announced that LB had been made an honorary DJ at Sting Radio. Janet described the campaign as a choir without constraint; people lending an ear and pitching in together. “A talented, unconditioned choir of excellence!” She described how the quilt not only records the terrible things that happened to LB but also his life and his personality. Finally, Imogen talked movingly and powerfully about her cousin Rachel who loved cherry coke and cheesy wotsits. She ended by talking about an event at Inclusion Scotland where George Lamb announced “We are the revolting subjects and we are here to revolt”.

The discussion involved powerful stories from ‘just two mums’ as the founders of Unique Kidz and Co described themselves, as well as reflections about the role of social work.

It was powerful, moving, emotional and pretty humbling (not sure of the right word here) to listen to this, surrounded by LB’s artwork. I think Imogen summed it up perfectly.

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Thank you to Chris Hatton for organising so seamlessly, and to LICA for hosting with generosity and welcome.

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Week 5: Quilt Correspondence #107days

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This time a year ago, hundreds of people were busy designing and stitching patches for what became the truly amazing Justice Quilt. When it came to sending patches to Janet, Janis, Margaret and Jean many of you added notes, letters and cards and explanations of why you got involved. Amongst scores of apologies for the quality of stitching, several for tardiness and lots of luck for the final jigsaw; love, hope and gratitude were the emergent themes amongst the messages.

This post shares a handful of quotes from the correspondence that accompanied the patches:

Thank you for providing such a positive form of protest for Justice. 

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I love the idea of making the Justice Quilt: it’s a great way to celebrate Connor and to create a way of making a largely digital campaign have a ‘real life’ object. My daughter and I feel proud to have contributed a small part – Claire

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There but for fortune go you or I. My son has been in several institutions, I have worried about his safety. I am so glad that Connor’s parents have the strength to push for change – Susan

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It’s a bit of a wobbly, hand-sewn one [patch]. I wanted to celebrate those amazing professionals who have skill, compassion and empathy to support young people like LB. #107days included a post ‘Drops of Brilliance‘ that sums it up. We are hugely grateful to those people who offer that support to our family and to our son, Matt. This is for all who go the extra mile, put in all those extra hours, and show with everything that they do, that they respect, value and care about our young people – Jan

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Week 5: Quilt Graffiti #107days

This week of #107days is focused on the amazing Justice Quilt which is coming to the end of its residency at People’s History Museum, Manchester.

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Jack, who took the awesome photos in the last post, wrote us a guest post about his visit to see it at the weekend:

I am truly honoured to have my photos on here. When we got there on Saturday, first of all I was trying to capture the quilt from every possible angle I could find (Sara if you want about 30 more photos of the exact same thing but with more blur, random building structures, people in the way and poor lighting, I’ve got you covered).

Then I began to look properly, still taking photos of course, but looking at each individual patch.

Ceri, Phil and I were there pointing out all the incredible intricate designs for about the next half hour and then when we went upstairs (I was looking for more angles) we found that we’d just missed another load of amazing ones! dude. was my first favourite, although I ended up with about half the quilt as my favourite in the end.

I think that’s what struck me the most when I was there, this absolutely huge quilt, full of so many different wonderful messages and memories. If I could stitch, I think I would’ve liked to have done one like dude. Sara, you’re one of the few people I know that still says dude and I think I associate it with you just as much as I do the blog!

For me that’s a happy thought and a sad thought. If I’m honest, I don’t read the blog as much as I used to. When I think of the blog I think of the fantastic stories I read when Rosie first told me about the blog one night in first year (2011). (I’m paraphrasing but) She described it as an embarrassingly great selection of stories from home that she looked at whenever she felt homesick or upset. A few months later I was trusted with the URL, read a few stories (Johnny English cave story remains a firm favourite) and signed up for emails much to Rosie’s dismay! I was experiencing the more entertaining part of the life of the dude in real time now, but I never met the dude, so I associate dude. with you and the blog. Even when I read the stories again now I’ll hear the TO FANCY OR NOT TO FANCY? THAT IS THE QUESTION in Tom’s voice (it does sound like something he’d say). I’ve never heard Connor’s voice, I don’t know what it sounds like.

But then again that’s something I find strangely wonderful. Having been around so much since his death, heard so many stories about what a caring, kind and funny young man he was (sometimes I’ll even work them into the conversation to get Rosie to re-tell them, sshh!) and reading them myself before this all happened I feel like I know him despite all this. I think that’s testament to all of you and I’m sure many of the people who contributed to the quilt or to #JusticeforLB or any of this without ever meeting Connor, just like me, feel the same.

I often think about how I nearly met Connor. If I’d been friends with Rosie just a few months earlier in first year, maybe even a few weeks earlier then I may have come down with Ceri and the other Manchester lot and met him during Easter 2012. Later on Saturday Ceri was telling me about how when she’d met him that Easter he was mostly watching videos of trucks on youtube and listening to techno music, from what I know I’d say she had a pretty classic experience of Connor, an experience she described as pretty cool. I’d say she was probably right.

But then I think about how that thought process is utterly ridiculous.

I should have met Connor in August 2013 when I was going to visit Rosie.

When I brought you lemon cake on the 8th of July 2013, he should have had a slice, or ten.

I should know what he sounds like.

I should be reading hilarious stories that come into my inbox every few weeks.

I should have my own stories to tell other people.

This should never have happened.

When we first saw the quilt Ceri pointed out the teardrop with HOWL written in it, she told me how whenever she sees a mydaftlife post with a howl caption, she feels compelled to read it. When we went upstairs Ceri saw a chalkboard supposed to be a discussion board about whether or not Nigel Farage and other politicians have right to a private life. Having seen the quilt she felt compelled to write #JUSTICEFORLB all over it instead.

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I saw the quilt and felt compelled to write Fuck Southern Health.

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Week 5: Quilt Stories #107days

The Justice Quilt emerged out of the wonder of #107days last year, patches were crowdsourced from across the world and lovingly stitched together into the magnificent quilt by Janet Read, Janis Firminger, Margaret Taylor and Jean Draper. You can read about the process of making the quilt here.

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This year as part of #107days Take 2 the quilt has taken up residency at the People’s History Museum in Manchester. It is there until Wednesday, 22 April so you’ve another three days to pop along and view it in this magnificent setting. It continues its travels after Manchester, moving to Lancaster University, more about that in due course.

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This week we will share some of the quilt selfies on this blog and people’s reactions to seeing the quilt. We have some of these from twitter, but we’d love to hear more. Drop us a tweet or a comment on this post of what you felt when you saw the quilt. If you stitched a patch we’d also love to hear from you (whether you’ve seen the quilt of not yet) – why did you get involved, how did you decide on your quilt design, how did you find stitching a patch, what do you think of the final masterpiece?

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These amazing pictures in today’s post were taken by Jack; here’s a few more for you to enjoy:

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What a difference a year makes? #JusticeforLB

It’s now 74 days since the spectacular finale of the #107days campaign, 439 days since LB died, preventably in STATT.

Progress towards #JusticeforLB continues at a pace, in the last week alone we’ve unveiled the beautiful LB Justice Quilt, and yesterday we launched the LB Bill website. All this in addition to the other actions documented in our earlier post about maintaining momentum. Quite a lot of action for an entirely volunteer campaign figured headed by a family in the worst situation imaginable. So yesterday Sara and I were talking about how much has been achieved since the end of the #107days, in those 74 days.

Contrast that progress with the progress made in STATT in the 74 days that immediately followed LB’s death. Over to Sara:

Apologies for the somewhat ironic title for this post. A year ago this week, the CQC went into the Slade House site (which included the STATT unit) and did an inspection that (at last) made visible the level of disfunction/malaise/failure that characterised provision there.

A marker of how bad it was, LB’s death hadn’t sparked any apparent consideration around whether or not there might be issues around the quality of care provided. Nothing, in 74 days after the worse outcome of ‘care’ imaginable, no action, no change, no improvement.

The CQC inspection team pitched up for a routine inspection and did their job.

The full horror of what the team found can be read here. It’s a deeply sad, harrowing, unbelievable and enraging read. And was followed by similar failures at other provision in Oxfordshire.

Here in the justice shed we try to remain positive and optimistic so, in the spirit of 107 days of action, we raise a cuppa to the CQC and effective inspection of health and social care provision.
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It is impossible to know, but our suspicion is that without CQC conducting routine inspections, issuing enforcement action and continuing to monitor the ‘progress’ at Southern Health, it is a very real possibility that STATT could still be open. The inevitable outcome of that is too much to imagine.

We have a long old road to get #JusticeforLB, but there are inklings that in small ways we may already be improving things for other dudes. So, as ever, thanks for all your support. Huge thanks also to CQC, for doing their job, but doing it with care, compassion and attention to detail, something the evidence suggest were rare commodities around STATT.

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.

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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.

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 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.

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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 61: Justice – one stitch at a time #107days

Those of you who regularly read the blog (and someone is because our web hits passed 30k this weekend, thank you) will have noticed that Day 59 was adopted for a quilting exhibition. Today is another quilting action, adopted by Lucy and Cardiff Law School, to share their day. We hope that they will inspire others of you to take part in the Justice Quilt, there is still time, but you’ll need to be quick, patches need to arrive by May 31. Here’s what they had to say:

Connor regularly featured in his mother’s blog as ‘Laughing boy’ (LB), and became known to many within the disability and wider community through her tales of his jokes, creative endeavours and adventures. We learned about his love of transport, drum and base music, trips to London and his wide circle of family and friends. Connor’s death stunned those who had followed his mother’s blog, and its reverberations are being felt throughout the UK and around the world. A creative and organic campaign for justice – #JusticeforLB and 107 Days of Action – sprang up on social media, with a diverse range of people ‘adopting’ a day to coincide with Connor’s detention in the unit in 2013. Each adopted day involved an activity to raise awareness of what happened to Connor and the injustice faced by other people with learning disabilities in the UK and around the world. Connor’s own artwork features prominently in the campaign, adorning postcards, pencil cases, badges, and even our own conference flier. Buses also feature regularly, one highlight being a bus company dedicating three buses to Connor.

Here at Cardiff Law School, we held a very unusual and creative seminar, befitting an irreverent and creative young man, to join in the 107 Days campaign. We are very fortunate at Cardiff to have Professor Janet Read as an Honorary Professor of Law. Janet’s research specializes in the rights of disabled children and adults, and she also happens to be a super stitcher, and one of a creative trio who are putting together a Justice Quilt as part of the 107 Days campaign. Together with Professor Luke Clements, Dr Lucy Series and Erich Hou, we held a seminar explaining what had happened to Connor, describing some of the wider justice issues affecting people with learning disabilities and talking about a long and proud tradition of stitching and resistance. We were delighted that a delegation from Cardiff School of Art and Design came along, and around thirty or so of us spent a few hours stitching and gluing, knitting and drawing on squares for the Justice Quilt, whilst thoughtfully discussing what had happened to Connor and what needed to change.

Day61CdfQuilt

Connor’s death did not happen in a vacuum and was not an isolated event. A recent study found that 42% of deaths of people with learning disabilities were ‘premature’ (the CIPOLD study, 2013), a phenomenon which Mencap has called Death by Indifference. A major report by the House of Lords Select Committee on the Mental Capacity Act 2005 heard evidence from a wide range of sources of families of people with learning disabilities being pushed aside by professionals, as Connor’s family were found to have been. Several studies have raised concerns about unlawful de facto detention of people with learning disabilities; for the last months of his stay in the unit Connor did not have any formal detention safeguards which could have scrutinised the basis of his stay there.

The kinds of assessment and treatment unit where Connor was detained have been plagued by successive scandals over the last decade – from the Cornwall scandal (2006), to Sutton and Merton (2007), through to Winterbourne View in 2011. Each scandal has triggered waves of public outrage and national studies which have confirmed widespread problems with these types of units (A Life Like No Other, 2007; National Study, 2009; Learning disability services inspection programme, 2012). An annual ‘Census’ set up in the wake of the Winterbourne View scandal found that 3,250 adults with learning disabilities remain in these units; over half have experienced self-harm, an accident, physical assault, hands-on restraint or seclusion during the three months preceding the Census. Last week, the Minister for Social Care Norman Lamb described a scheme set up in the wake of Winterbourne View to move people out of these hospitals as an ‘abject failure’ (HSJ, 2014).

Connor’s preventable death brought home that these studies and reports are not just about statistics, they are about real lives ensnared in systems which deny people opportunities to flourish and leave them vulnerable to abuse, prolonged unnecessary detention and even death. As successive policy initiatives to address these issues have failed, it is clear that in some ways the problems have a very complex etiology – from a lack of resources and appropriate provision of support in the community, through to the failure of legal and regulatory frameworks which are intended to protect human rights. One study even suggests that the structure of our financial systems may favour models of care based on detention and ‘warehousing’ over support for independent living in a person’s own home and community, even though the cost of these units can be eye-wateringly high (NDTI, 2011).

Yet in another sense, Connor’s death reveals that the roots of the issues can be remarkably simple, even if they are not easy to change. They are about recognizing – in law, policy and in everyday life – that people with learning disabilities have lives of equal value to others, that their aspirations, relationships, talents and individuality should be valued and supported on an equal basis with others. This is why Article 8 of the United Nations Convention on the Rights of Persons with Disabilities emphasizes the importance of raising awareness of the rights and dignity of people with disabilities and combating stereotypes.

Activities like quilting may seem far removed from the law, but by creating a space to talk about Connor’s life – as well as his death – we hope to promote awareness of the capabilities of men and women with learning disabilities, and reflect on how we can contribute towards change in our work and everyday lives.