Week 15: The Tale of Laughing Boy #107days

So we’re here again, the end of #107days for the second time. It is hard to believe it’s now two years since LB died. There really aren’t any words. Today we’re pleased to be able to share The Tale of Laughing Boy with you.

Produced by the brilliant My Life My Choice and Oxford Digital Media, with funding from Oxford City Council, grab a cuppa and sit back to watch.

Thanks to each and every one of you who have supported #JusticeforLB these past two years and both #107days campaigns. As Sara says of the campaign in the film:

‘These people haven’t met Connor, they don’t know Connor and yet they recognise the injustice of what’s happened, they recognise what a quirky and colourful individual he was and they’re acting, and they’re prepared to say this is wrong and join in. I think that’s absolutely amazing, it’s been so heart warming and so reassuring that so many people have stepped up and done all these different things and got in touch, and are really moved by it all. They just get it, I think that’s great, that has meant the world to us’.

As for Sara’s hopes for the future:

‘My beyond wildest dreams would be that… we didn’t even have to talk about learning disabled people, because there wouldn’t need to be that division, because everybody would have a right to live where they choose, everybody has an imagined future, and the distinction between being learning disabled and being non-learning disabled would become sort of irrelevant, because it isn’t an issue’.

Final word goes to Rich:

‘In many respects the world would be a lot better place if we all behaved more like Connor and less like not-Connors; his sort of approach to life was so straight forward and simple… uncomplicated… you just sort of think I wish I could be more like that, I wish we could all be more like that… we should all be more like Connor and people like Connor and the world would be a much better place, and it would be a much more inclusive place, and actually we might all enjoy it a bit more.

Imagine, just imagine for a moment…. and ACT!

Week 10: 1 in 4 MPs contacted re #LBBill, still 75% to go #107days

Wow, what a weekend of #bankholidayactivism. Ever since the #JusticeforLB campaign evolved/emerged/was born (still not sure which of these is most true) we’ve been blown away by the responsiveness of people. This weekend proved no exception and we’re delighted to now share that slightly over 25% of all MPs in Westminster have been contacted about the #LBBill.

Seriously, that’s 1 in 4 who will know about LB, who will hear about his entirely preventable death, and who hopefully will read up on the #LBBill and lend their support to it. The responses from MPs on twitter and email has been overwhelmingly positive, where they’ve had a chance to engage, and let’s be honest MPs are allowed time off too and given it was a bank holiday and the start of half term for most people, we really didn’t expect to have had pretty much any response.

We’re not getting complacent though. As wonderful as it is to see that all MPs in Norfolk and Devon have heard about the #LBBill there are still whole swathes of white on our map where people don’t yet know.

So this is a quick thank you, a mini celebration and a call for further action.

If you are reading this, and you care about disabled people, please take action to contact your own MP and let others know about the Bill and what it proposes. You can read Sara’s post from yesterday for more on what difference the LBBill would have made to LB – short answer is he would probably still be alive today, playing with his footy guys and chatting away to Chunky Stan.

We need to make sure no other family suffer the same loss that LB’s have, that no more disabled people are denied what are essentially very basic human rights. So please take action, we need to give the #LBBill every chance to be heard in Parliament.

Thank you all.

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.

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.

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

Progress towards #JusticeforLB in #107days

When we set out on #107days we weren’t really sure what shape the campaign would take. We thought we’d aim for an action, thought or reflection each day, but we never in our wildest dreams expected the degree of engagement, passion and conviction that emerged in the name of getting #JusticeforLB and all dudes. On Friday, the final day of the #107days campaign, and the first anniversary of Connor’s death, the most remarkable thing happened. The support and engagement and love was visible for all to see, as person after person changed their profile picture on twitter or facebook. This is what Sara had to say about it:

Friday was a day I dreaded with every bit of my being. When I woke, very early, I was surprised to see that overnight, people had begun to change their photos on twitter. Some couldn’t wait till the day. Rich and I went to the cemetery. We bickered on the way there about nonsense really, both stressed/distressed beyond words. The woodland section was beautiful and the cemetery was alive with rabbits, birds and insects. We lit a candle and placed it carefully among the long grass. Next to the buses and model policeman.

We had our usual ‘how.can.he.be.dead?’ looping discussion. Thinking about how, that time a year ago, he was still alive, looking forward to the Oxford Bus Company trip. How his death could have so easily, so fucking easily, have been prevented.

An hour or so after we got home, people started calling in and we spent the rest of the day, till the early hours of Saturday, hanging out, chatting, drinking and eating with family and friends. A couple of times during the day I had a quick peek at twitter/facebook and was astonished at the sea of black and white pics of LB. It was absolutely brilliant and so incredibly moving.

The next morning, I lay in bed reading through all the tweets. Hundreds of people. Stepping up in solidarity with the quirky guy who should still be here. Wow. I thought. Scrolling down and down. Wow. Wow. Wow. When I got to Divine Comedy, I couldn’t help laughing. Absolute genius. And the most brilliant timing.

#107days has been outstanding. And hopefully transformative.

Friday was the busiest day on the blog since it started, gathering 7,226 of our total 63,497 views. This post isn’t going to recap on all of the contributions to #107days, we will do that at some point but not yet. Instead we thought it would be good to share the image below… see how far #JusticeforLB has travelled, in the first 100 or so days. We’ve had 63k blog hits since this blog was established 113 days ago, an average of 550 hits a day, and we’ve reached more than half the world.

We also thought we should update people on the progress made so far to getting #JusticeforLB. At the start of the campaign we were explicit about what justice looked like, so going above and beyond in an attempt to engage the NHS, we’re using a performance dashboard to update on progress!! You never know we may write our very own robust action plan next. Anyhow, I digress. What follows is what #JusticeforLB looks like, progress so far, and an assessment of performance:

For LB

Staff, as appropriate, to be referred to their relevant regulatory bodies:
>> Waiting to hear what is happening from Southern Health: RED

A corporate manslaughter prosecution brought against the trust:
>> The Police investigation is ongoing: YELLOW

Meaningful involvement at the inquest, and any future investigations into LB’s death, so we can see the Trust and staff account for their actions in public:
>> No progress on the Inquest yet, pending the Police investigation. NHS England have been very open, and have fully involved the family at every stage in commissioning the pending Serious Case Review. The family will also choose one of two lay representatives on the SCR Board: GREEN 

For Southern Health and the local authority

Explanation from the CCG/LA about how they could commission such poor services:
>> Response One + Response Two = No progress: RED

Reassurance about how they will ensure this cannot happen again:
>> Meeting on 16 May with reassurances given that contracts are being looked at, but no confidence gained that it wouldn’t happen again: RED

An independent investigation into the other ‘natural cause’ deaths in Southern Health learning disability and mental health provision over the past 10 years:
>> An investigation has been commissioned by NHS England to look at all unexpected deaths since Southern Health came into being in April 2011: GREEN

>> Terms of reference yet to be agreed or communicated and there are concerns that the Southern Health Board Minutes present an alternative picture to that which the family were led to believe by NHS England: RED

For all the young dudes

A change in the law so that every unexpected death in a ‘secure’ (loose definition) or locked unit automatically is investigated independently:
>> No Progress: RED

Inspection/regulation: It shouldn’t take catastrophic events to bring appalling professional behaviour to light. There is something about the ‘hiddenness’ of terrible practices that happen in full view of health and social care professionals. Both Winterbourne and STATT had external professionals in and out. LB died and a team were instantly sent in to investigate and yet nothing amiss was noticed. Improved CQC inspections could help to change this, but a critical lens is needed to examine what ‘(un)acceptable’ practice looks like for dudes like LB:
>> There appears to remain a gap in understanding ‘what good looks like’, or in implementing what is already known. It greatly concerns us however that the body appointed to address this very matter, Winterbourne JIP, appears to fail to make any real progress. We were surprised that they chose to not engage with the #107days campaign, especially given the pertinence to their remit and the widespread support from key stakeholders: RED

Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes:
>> Lucy Series blogged about this issue on Day 32 and also blogged on her own website when the Government responded to the recommendations of the House of Lords Select Committee on the Mental Capacity Act 2005.

>> It also came up on the webchat with Steve Broach on Day 103. Steve said this:

The most recent Supreme Court decision to directly impact on disabled young people is the Cheshire West case, which radically increases the number of disabled people whose placements involve a deprivation of liberty requiring justification to avoid a breach of their human rights – see the judgement here.

So in summary we’re confident of progress: GREEN

An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision:
>> No progress. RED

Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society:
>> This is where you guys come in. We were blown away by the engagement with the #107days campaign which showed a version of collaboration and co-production that the social care textbooks could only dream of. LB and dudes were central, always central, there was no hierarchy, fancy job titles, pay packets, pecking order, communications strategy, spin or fact-finding visits. You stepped up, you debated and contributed, you made suggestion and led by example, and through it all ego never entered the arena. Most of all you gave us, and each other, hope. Hope for a better, brighter, alternative future. This is what Mark Neary had to say:

It has been a very moving 107 days but yesterday was quite phenomenal, with so many people recognizing the importance of the campaign. I do feel hope. In the last couple of weeks we’ve had several of the great and the good wringing their hands and declaring that they are at a loss about what to do about ATUs and the future of the people trapped in them. The Winterbourne JIP has failed to bring about any meaningful change. Norman Lamb says the right words but admits he has hit a brick wall. This week I was invited onto BBC Radio London to discuss adult social care and one of the leaders from ADASS was on, also confessing his fears of the future. Its looking like these people can’t do it. I’m not sure the will is there. Perhaps the system can’t be changed from within the system. Perhaps it will be movements like #JusticeforLB that change the social care world. The will, the passion, the energy, the humanity is there. I think we have to stop waiting for the leaders and the social care world to show its humanity. It ain’t going to happen. Apart from some isolated (albeit powerful) examples, I don’t see any drive from within social care to truly serve the people they are meant to be serving. Service is dead. The drive, the humanity is coming from the families, ordinary people and the legal world. Coming together makes us very powerful – we’ve already seen lots of examples of the system feeling very threatened by that power. Good. This isn’t the time for observing niceties. This is the time for action. I’m sick to death hearing about culture changes being needed. Sod organizational cultures – let’s start applying the law. The human rights act. The mental capacity act. If your culture means you can’t apply the law, in fact you break you law, then you’re not fit to do your job. Let someone else take charge.

So we’re giving this performance marker a big fat GREEN.

This gives us the following summary of confidence in performance:

 7 indicators RED: 2 Southern Health, 1 NHS England, 2 CCG/LA, 1 Winterbourne JIP, 1 unclear

1 indicator YELLOW: Police

4 indicators GREEN: 2 NHS England, 1 unclear, 1 JusticeforLB’ers

Each and every one of you who have contributed to the #107days campaign has inspired us, and renewed our hope, that there is a better way and it’s in our grasp. We aren’t waiting for anyone’s permission to shape it either. For those who have been asking #107days is over for 2014, but #JusticeforLB has only just begun. We will continue to update this blog, twitter and facebook, from time to time, and while the days of action have completed, you are welcome to continue to use the blogs to debate and discuss things. In the words of Mark Neary:

Pulling this post together, I guess I’m hopeful for the future for Steven, and for social care because the #justiceforlb campaign showed that you can have your guts ripped out but through love, humanity, downright common sense and a fantastic dogeddness, find the strength and compassion to fight on.

and Elizabeth:

#JusticeforLB and the #107days campaign has been amazing and inspiritional. To see so many people come together behind a cause shows something of what might be achieved in terms of a real and lasting legacy. It has made me feel hopeful that it is possible to change the way people with disabilities and learning difficulties are treated. As a mum to a young dude I am constantly thinking of how to keep him safe and cared for in the future.  I cannot imagine how difficult the last year must have been for Connor’s family, without him. The sight of so many LB profile pictures on Twitter today was a very fitting way to round off the #107days. A reminder of the person at the centre of it all. A handsome, quirky, funny, unique and special 18 yr old young man. He should not have died. x

and finally Anne-Marie:

“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”
― Dalai Lama XIV

#107days is hope.

Thank you all for the support. Let’s keep the hope alive.

Day 107: Honouring LB #107days

Today we come to the end of #107days of action, exactly a year to the day that LB died, whilst in the ‘care’ of Southern Health, an entirely preventable death.

As accidental campaigners we never really could bring ourselves to plan for today, we’ve discussed it often, but nothing felt appropriate. Yesterday we finally settled on today’s action, in keeping with the rest of this entirely crowdsourced campaign, it’s over to you, our amazing, passionate, creative, committed, dedicated network.

We have two options for you today, you’re welcome to do one of them, or both of them (or none of course, it’s really your choice).

Firstly, please leave a comment on this blog post with your ‘take away’ message from #107days; what one memory, or thought, or learning will stick with you. How has LB, and this campaign in his memory, had an impact on you? We’re hoping for lots of comments and you’ll be able to read them as they grow throughout the day. If you’re a blogger and would like to write a post on your own blog please do add a summary, and a link into the comments here. Please remember that comments are moderated, so if your comment doesn’t appear immediately there’s no need to repost it!

Secondly, please change your social media profile pictures to LB for the day. You’re welcome to change it on twitter, or facebook, or tumblr, or instagram, or any combination of the aforementioned sites (and of course any others). We think this collective action will have quite a visual impact, to maximise that please download our profile pic below (right click on the image will allow you to save it to your computer and you can then upload it to twitter) so everyone is using the same black and white pic.

For maximum impact we ask you to only use the picture for the day, we very much hope you’ll join us.

More information on what next for the #JusticeforLB campaign will follow in a couple of weeks. You can follow this blog, or follow us on twitter, or facebook. We will seek your input before we make any decisions, but before we ‘move on’, we’d like to honour LB today.

Thank you all, for your support throughout #107days and today especially.

Day 101: An animated, poetic call to act #107days

Day 101 is another shared day, this time between David and Trish.

This is what David had to say about why he chose to support #107days and #JusticeforLB:

When I first enquired about sponsoring one of the 107 days I wasn’t quite sure what I was going to do, I just felt compelled to do something. Having agreed to prepare a prezi with Sara for her slot at the 3 Lives Event earlier in the year and then meeting her and listening to her speak, for me this was a no brainer. Why? Well, because aside from the sheer frustration I felt at hearing Connor’s story,  seeing Sara hold it together whilst presenting in order to get everyone to sit up and recognise that this actually happened. I was also very embarrassed. Embarrassed by the fact this could happen, embarrassed that this has happened so many times before, and embarrassed that I am part of system that has let Connor and so many others down so badly.

When I think about my own career and what has driven me to want to do more, make change and challenge this very system; I cite three core experiences all of which resulted in the self same feelings of embarrassment, annoyance and at times times anger. I offer these here, for the reader to contemplate, digest and act; yes to act. Just in the same way you have taken action to arrive here at this very site, to read these very words and to want to make change and denounce any form of abuse, neglect or infringement of rights.

So, number one. In 1987 whilst working in a residential care setting I accompanied four people with learning disabilities to visit a local pub. Sadly, no sooner had we purchased our drinks, the manager beckoned me over and said ‘no disrespect mate, but I don’t want them in my pub’. I had to go back to the people I was with and ask them to ‘drink up’. We were made to leave and all eyes across the pub tracked our departure as we were ushered out. The next day I complained to the brewery and went to the local press. The community revolted and the landlords reputation was besmirched. Justice.

In 1991 whilst undertaking my nurse training, I observed two members of staff assault one of the residents of the home where I was on placement. I wont go into the details, but lets just say this happened out of the blue. On their part, I never really got to know if this was some random act of boredom, a show of their status or prowess, a reminder to the people who lived there to ‘know their place’ or simply ‘a game’ like the ones staff described  during the panorama footage. When I spontaneously reacted during this event, I was taken by the two staff members (interestingly both of them were ex military personnel) and dragged outside in the snow and into a closed courtyard. I was given a clear message that I ‘better not mention this anything to anyone, or else’. The next day I made a formal complaint and reported what I saw. An investigation ensued and the two thugs were later dismissed. Justice.

In 2001 I supported a gentleman with learning disabilities to attend a hospital appointment in relation to the chronic ulcers on his feet and legs. During the course of the appointment the Consultant, without asking, led seven medical students into the cubicle and proceeded to talk to his protégé’s about this gentleman’s ulcers and his ‘mental subnormality’, bestowing on them, what he evidently thought was of scientific value. The gentleman, as the patient, dealt with this by pulling the jumper he was wearing over his head. The Consultant quite oblivious to this continued his oration, going on to make the announcement that the ‘best thing for this patient is to amputate his left leg’. I was incensed, outraged and again, embarrassed. The next day I wrote a letter of complaint to the Chief Executive of the Acute Trust, but instead of merely relaying my annoyance, I proposed a solution. This was gratefully accepted by the Chief Executive and as a result, my colleagues and I developed a package of awareness training for both existing hospital staff as well as medical students.

David feels strongly that sometimes we all need to act. In fact I’d go as far as to say (personal view) that by not acting, we are all endorsing this dire level of status quo, therefore we should not just feel embarrassed, but also culpable. David chose to act in Connor’s name too. He has crafted a very personal interpretation of what happened to LB. It has taken many hours of time, and much love and persistence (whatever you’re imagining double it, including one version becoming corrupted hours from finishing requiring him to start again). David could have very reasonably quit at that point but he persisted and produced this for you all to enjoy, and act on:

Sometimes assertive action is required, it’s a response to these kind of episodes, its not often the way you would have wanted things to go, but instinctively you feel you just have to do something, make change, denounce abuse or uphold peoples rights. The animation is my interpretation of Connor’s journey through the Assessment and Treatment unit. #JusticeforLB? I hope so.

David’s animation is accompanied today by another creative endeavour to act as a prompt for thought, reflection and action. Trish had this to say about why she is supporting #JusticeforLB and #107days:

I am shocked and horrified by LB’s death and by the 1200 premature deaths per year of learning disabled people in our care, that’s our care, public provision. And by the determination not to look too closely into those deaths (no review board to help find and fight underlying causes). Including the death before us – missing brain tissue? Optional pathology guidelines?

We need to speak, don’t we?

Trish has penned this poem in memory of LB:

Learning Disability 2013: in memory of LB

A child, my father, playing in the fields,

needed the bathroom in his old friend’s house,

took a wrong turn – opened another door –

came face to face with a much older child

he’d never seen before.

He is long gone, I don’t know what they said.

 

Bewilderment and awe played on his face.

How many families hid a child? he asked,

not spoken of, perhaps the doctor knew,

perhaps the priest. Why silence, was it shame?

more likely fear – there wasn’t any help.

Except the institution.

 

DON’T

say it couldn’t happen here!

Don’t say we offer treatment, pay for care,

When all too often there is no-one there,

urgent requirements must wait weeks or months,

and information’s scattered on the wind!

Stop the bus!

You have the wrong driver –

roaring us back to the horrors of the past!

 

Skilled carers with the families could ensure

the bus is going in the right direction.

To a place of joy, space and old buses,

to the farm for days of work and giving,

home to parents, brothers, sisters, rest.

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.

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.

 

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 95: Team Triathlon and Walking the Talk #107days

Day 95 is another shared day; this time between Lesley, Glynis and Emma, and Debs. Read on to hear and see what they’ve been up to.

Lesley has this to say about taking part in #107days:

It is certainly not easy to follow so many wonderful contributions.I have been in such awe of the amazing people behind the wonderful events and dedications so far that I must start by acknowledging all of you.

I learnt about the ‘107 days Campaign’ around the same time that my sister, Glynis (along with her daughter, Emma) asked me take part in the Henley Team Triathlon.  I have a vague recollection of willingly agreeing to do the run part of the event after 3 rather strong Long Island Iced Teas on a girl’s night out!  Nevertheless, it could not have come along at a more opportune time and when I mentioned to my sister and Emma about us dedicating the day to Connor, their response was an unequivocal – YES – absolutely! I think that response pretty much sums up everyone’s attitude towards a chance to get involved really.

I have known Sara for many years and after being pretty much inseparable in our younger, fancy-free years (few tales I could tell there!), I unfortunately lost contact with Sara when she moved away from our home town. Crazy in hindsight, as she was hardly the other end of world! But as we all know peoples’ lives do take them in different directions and it is all too easy to let the years slip past. So, sadly, I hadn’t seen Connor for many years. Over the years though I kept a keen interest in Sara’s blog; so beautifully written and a delightful collection of random family events and wonderful ‘screenshots’ from LB’s life.

One of my favourite LB ditties would have to be the one below…

‘LB saw the dentist at school today…

“Wow! Did you LB?”

“Yes Mum.”

“What did they say?”

“Open your mouth Mum.”’

Priceless!

Needless to say the posts after Connor’s admission to Slade House made for tough viewing and none of us will ever forget reading of Connor’s death in a poignantly brief entry on July 4th 2013.  The shock and sadness was numbing. I cannot begin to put into words how I felt then and continue to feel when reading about the turmoil of events that have followed.

This morning I found myself re-reading some of the past contributions and I’m equally touched every time I do. It is so heart-warming to see so many people coming together from various walks of life with different experiences and stories to tell, but all brought together for one common purpose in the hope that lessons are learnt far and wide and that no other family should ever have to go through the devastation that Sara and her family have had to endure. I have no doubt that it is a campaign that will run and run. People are angry, really angry and a bunch of angry people bought together is a powerful thing!

So in the name of LB my sister Glynis, her daughter Emma and myself will be taking part in the Henley Team Triathlon.  We may not look quite the part; there have been a few hiccups with the elder ladies! (Glynis is cycling but I’ll not mention her saddle problems!) my ankle will also need strapping because of a weak Achilles tendon, but happy to say that Emma, our youthful team member, is on top form! Regardless of age handicaps and sore bits, we have the biggest incentive and raising funds and awareness will be very much on our minds on the day.

Meanwhile Debs has written this blogpost and made the film at the end:

I have followed My Daft Life for many years, initially with smiles and laughter, relating to some of the experiences. However, my children are still under 10 so much of the battle with the Unit and the poor support during transition was something I could only read and think ‘oh please, please, please let things have improved by the time my eldest reaches this age’.

During my short time in this Jungle, I have met so many people who talk a good talk. People who tell you what you want to hear, people who promise you everything and people who tell you they are going to change things.  I have been involved in lots of box ticking and lots of hit and run consultation. I have spent hours in meetings, often on a voluntary basis, because I thought it would make a difference if the views of families were heard.

Sadly, I walked away from many realising that I had achieved nothing except to allow others to say ‘we listened to families’ or more accurately, ‘we listened to families because we have to, but we did what we had planned to do anyway’.

The 107day #JusticeforLB Campaign is giving us all the opportunity to get involved, to unite and to campaign for a difference that will actually help our families.  If you, like me, have young children and think ‘well this doesn’t affect me’, think again. Time flies quickly and your little one will soon be a little dude or dudette. This campaign is for all of us, all who have a child or a young person with a learning disability in our family, irrelevant of age.

We are not just talking about parents and carers, we are asking everyone, siblings, aunts, uncles, grandparents, carers, godparents and friends, please get behind this campaign, unite and make a real difference. Please. Let’s Walk, not talk.

Day 94: Citizen Advocacy and Education Fest #107days

Day 94 is another shared day, this time between Barbara and Gail. They both opted to write blog posts, Barbara’s is featured below, together with extracts from Gail’s although you’ll need to visit her blog for the full piece.

When asked why she was supporting #107days and #JusticeforLB this is what Barbara had to say:

I’m a citizen advocate who is also a teaching assistant on the BA(Hons) Learning Disability Studies course at University of Manchester and a volunteer supporter with their Partnership Steering Group. I first became aware of LB when I stumbled on Sara’s tweets last winter as a novice on Twitter. Shocked by Connor’s death, struck by Sara’s frankness, I was and remain in total admiration of her determination and staying power. I too want to see Justice for LB, justice for all the dudes young and old. The campaign makes me wonder what becomes of abuse victims who don’t have anyone to speak up on their behalf… I believe many people, members of the public, can make a positive difference through citizen advocacy: you don’t have to be an expert to be an abuse watchdog.

Barbara asked to write a blog post for her action, which is reproduced below, Speaking up for Citizen Advocacy.

In this blog I am going to touch on abuse, promote citizen advocacy and question current advocacy trends for learning disabled people. Abuse continues despite numerous reviews and recommendations. The reasons are complex but two issues stand out for me:

1. Bureaucracy, ingrained in service culture, obstructs and takes precedence over the support and care of individuals. Ever expanding, repetitive and often seemingly pointless, it leads to the neglect and abuse of individuals who are supposedly being ‘served’. There would be less abuse if services streamlined all this red tape!

2. Social Devaluation: People make unconscious judgements about others. Negative judgements mean marginalised people like those labelled as learning disabled are considered of less value. This can lead to them being treated badly and abused. Also they may well be denied valued things in life like supportive relationships, respect, love, autonomy and participation in meaningful activity. To combat this social devaluation Wolf Wolfensberger, an American psychologist, promoted the importance of creating, supporting and defending valued social roles for people at risk, social roles like family member, friend, worker, volunteer, artist, cinemagoer, holidaymaker, car owner. Thus vulnerable individuals can gain self-esteem and are likely to be viewed more highly and treated better by others in society (Wolfensberger, 1998). This is how citizen advocacy originated.

Citizen advocates are volunteers who develop long term relationships with vulnerable individuals and speak up on their behalf. The advocate partner is someone at risk of having choices, wishes and decisions ignored, and who needs help in making them known and making sure they are responded to. The citizen advocate also attempts to meet their advocate partner’s expressive needs like emotional support, warmth, commitment, friendship, love. More information about the citizen advocacy partnership is available here.

Over 10 years my advocate partner Gloria (not her real name) and I have built up a close relationship. Like LB, Gloria is fond of public transport and our weekly meets invariably entail a tram or bus trip as well as a bite to eat. I have supported her to be heard and helped realise her wishes to get a car and go on holiday. Gloria has experienced abuse. Often the system is at fault and staff aren’t always aware. Ways I have helped to counteract abuse

• Money spent irresponsibly by past support workers was refunded to Gloria in response to my formal complaint.
• With my instigation, Gloria has received support from familiar support workers during hospital admissions to ensure past experiences of fear and neglect were not repeated.
• The service was obliged to shelve plans to set up a staff office in Gloria’s home due to my protest regarding her tenancy rights. Awareness-raising is an ongoing need, for instance the connecting door with the neighbouring tenancy, keeping it open is convenient for staff but this breaches the tenants’ right to a private life.
• I alerted the CQC who discussed the negative effects of staff shortages and regular use of agency workers with Gloria’s support service. Recent increased permanent staffing will hopefully provide greater stability.

Benefits are reciprocal: I have gained massively too and will always be indebted to Gloria for many things, including my degree.

UK Citizen Advocacy was developed in the 1970s/80s to support individuals being resettled from the long stay institutions, some of those partnerships continue today. The 2001 Valuing People policy offered local authorities funding to set up self-advocacy and citizen advocacy projects. Development of the latter was patchy and the impact unclear and sadly citizen advocacy has gradually receded. This may have been partly due to the difficulty in measuring the effectiveness of this long-term partnership. Time-limited interventions are easier to substantiate and understandably commissioners want to fund evidence-based advocacy. So paid case advocacy has expanded and so have Independent Mental Capacity Advocates (IMCAs) as a result of the Mental Capacity Act. The different types of advocacy – case, IMCA, self, peer, citizen advocacy – all have their value but not at the expense of each other. The long-term benefits of the citizen advocacy partnership are equally if not more valuable in fighting abuse.

With the introduction of the new Care Act local authorities will be duty-bound to provide ‘independent’ advocacy for certain people to ensure they are better involved in the assessment and care/support planning processes and to support them through safeguarding enquiries. This is great but the Learning Disabilities Observatory believe there is a real danger that organisations will only be able to support learning disabled people assessed as ‘eligible’ for advocacy services and advocacy will come to be seen by commissioners as another professional ‘service’ to be delivered. Who is going to speak up for the rest? If services are at fault in the perpetuation of abuse why is advocacy, with its history of campaigning for rights and mission to question service organisations, increasingly joining the service provision fraternity?

Indeed the introduction of the City and Guilds advocacy qualification means advocacy is becoming increasingly professionalised with some contracts expecting organisations to employ qualified staff. Meanwhile recent policies like Building the Big Society 2010 and Learning Disability Good Practice 2013 encourage local volunteering and involvement in social action, capacity building and development of more community-based support. Plus person-centred circles of support are current good practice. To my mind citizen advocacy fits neatly with all of these. Another reason for it to be promoted not neglected.

A citizen advocate is also independent. Although, there is a lack of research into the extent to which independence supports, or otherwise, produce beneficial outcomes according to the School of Social Care Research, many advocacy organisations are not independent. Most are reliant on state funding, some provide care or support services and others share premises, email servers etc. with the services they are supposed to be holding to account. Advocacy organisations which are reliant, either totally or partly on state funding, are in a difficult position to dispute the parameters of their commissioning contracts. Indeed this Tuesday, Patrick Butler in the Guardian claimed charities (most advocacy organisations are) are having to tone down their campaigning for fear of losing state funding. Compromising independence is likely to reduce advocacy organisations’ effectiveness.

On the other hand, their ‘Loose Cannon’ characteristic enables citizen advocates to be more effective. Unlike in the US, due to public dependence on the UK welfare state and the fact it is taken for granted, the importance of independent advocacy is not properly understood or thought necessary by services or the general public according to Wolfensberger. But what we actually need are more independent citizen advocates who are prepared to speak up for people like LB and Gloria. At this crucial time when abuse isn’t going away, I call on commissioners, policy-makers, advocacy organisations, all those with influence to reflect on the current situation of advocacy in this country and promote more voluntary citizen advocacy. I believe many more people, members of the public, can make a positive difference through citizen advocacy. Come and join us!

Gail has this to say about supporting #107days and #JusticeforLB:

I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.

Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old. We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the ‘life raft’. Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.

Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK as a Family Consultant and Oxfordshire Family Support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.

Today Gail is speaking at the the Sunday Times Education Festival. A large event covering all things education and special education. You can read Gail’s full post on her blog, but here’s a taster:

There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family.

My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout.

Gail’s post, and indeed her talk, will discuss person centred approaches and the role that they can, and should, play in ensuring good support for all dudes.

Day 81: We won’t ever stop the bus #107days

Day 81 was adopted by Izzi and it builds on yesterday’s post Busking for Justice, while also standing alone (so you don’t have to have read yesterday’s, but really why wouldn’t you?). This post also includes links to awesome performances which are well worth checking out.

This is why Izzi wanted to support #107days and #JusticeforLB:

I’m struggling to know where to start, my whole life I have wanted to write and I always have plenty of middle but no beginning or end. Much like Connor’s and the Augustines’ stories, both ongoing and timeless. I wasn’t there for the start of either story and I know they will live on far beyond me in the hearts of all who hear them.

I heard about Richard, Sara and Connor before I met them. Back in 2007 the new fella in my life, John (aka Busker John/Kid Rage) as Richard’s new ‘employee’ spoke fondly of them and very highly of Sara’s lectures. I can’t remember when we first met but I felt like I had always known them and was immediately accepted into the fold. I am the baby of my family and as my older brother and sister grew up 5 years ahead of me I wished that I had younger siblings. Connor and his brothers and sister very quickly came to feel like surrogate little sibs.

At a bit of a hard time for me in 2009, returning to the ‘real world’ after travelling with John in India, straight into the recession, struggling over whether or not to be a traditional classroom teacher, Sara asked me to do some child minding for Connor and Tom and I leapt at the chance. Who wouldn’t want to hang out with those dudes of an afternoon.

Some of my fondest memories of Connor are simply sitting in the living room: Bess snuggled beside me; Stan adoringly attached to Connor’s lap; Tom on the floor with his Lego; Coach Trip, Police Interceptors or Horrible Histories on in the background. I used to watch Connor more than the TV, not to ‘mind’ him but taking delight in his absolute focus and dedication to the things he loved. I learned so much from our LB.

Actually I don’t think my career mentoring children in care would have started without LB and his family, and I know John feels similarly about his work. I definitely mentioned Connor in my interview. Real people, real emotions, real face-aching laughter and bundles of genuine love and care for friends and strangers alike.

We moved further away and naturally lost touch a bit but always revisited stories of Connor. I was thrilled when Sara started her blog as I could keep up with their lives despite the distance. Just like Beck from Day 60, it was the first and only blog I’ve had email alerts for. I would read out the stories to John and we’d be crying with laughter, then gradually pulling our hair out as times became increasingly difficult and scary. I wish I’d let Sara know more often how much their battle raged within us and about the thoughts and good vibes we were sending their way.

Then those words, seared into my mind’s eye, appeared in my inbox one sunny afternoon last July.

Never have any words affected me so completely or baffled me beyond any recognition or belief. I had to show John as I couldn’t say them out loud but he wouldn’t believe it was a real post for a long time. I rang my parents crying down the phone in a way I only remember doing as a young child realising that I could never be Peter Pan.

So that’s why I love Connor and his family so wholeheartedly and what made me want to do something, however small, for #107days. I owe Connor so much and he taught me to keep listening to and learning from young people.

To be honest at this point I think if Izzi had just shared that context it would have given me enough food for thought today, but no, context isn’t enough for Izzi and here her post continues with why she has adopted today.

Connor’s story needs to be shouted on the rooftops until something significant changes. I wish I held the magic wand. I was humbled and in awe of everyone’s creativity throughout this campaign and struggled to think about what I could do (beginning issues strike again!) I was very fortunate that the answer found me in a surreal, ‘this only happens to other people’ way.

Nearly 2 years ago, 364 days before Connor died, I took John to the O2 Academy Oxford on a whim to a BBC Introducing gig for about 6 quid. A band whose album he had just bought, We Are Augustines, (now just ‘Augustines’) were headlining. Sweet, we thought, we like the sound of them. It turned out to be one of the best gigs we’d ever been to. Despite only hearing a couple of their songs in John’s little green fiesta (which, incidentally, came to a sticky end on the M40 on the way to Connor’s funeral), I was bouncing away at the front and singing along in no time. To our surprise, the whole band came out afterwards and sat with us, chatting and just hanging out. Again, real people, real emotions and bundles of genuine love and care for friends and strangers alike. We listened to the album on the way home, completely pumped and blown away by the energy and emotion in every song.

We found out more about the band and learnt that a lifetime of tragedy and grief had been poured into this record, which went some way to explaining its gut-punching impact on heart and soul. (You can read more about their story here: Augustines) Billy McCarthy, the frontman of the band was in foster care in the US as a child which again struck a massive resounding chord on my ‘corporate parenthood’ strings (hate that phrase but the sentiment behind it is genuine).

I’m not one to exaggerate but if you’ve ever read Philip Pullman’s ‘His Dark Materials’ or watched the movie of ‘The Golden Compass’ the silence at the end of each song or gig feels a little like, I imagine, the intercision of your daemon. A little vital piece of you that you didn’t really know existed, is torn away and left exposed. I bought the (now vintage!) T-shirt, spread the word and started a fairly healthy obsession with their record. Like Connor with Keane (then drum ‘n’ bass!) I would listen on repeat, watch YouTube videos and basically never get enough of them.

Last year, John mentioned one day that one of their songs ‘Headlong into the Abyss’ made him think about Connor and he’d unconsciously adapted the words in his head. I realised it had also started to mean more to me and I would sing at top volume driving to work wondering how I could still see past my blurry eyes. The lyrics that resonated so much with Connor’s life were/became:

“We were headlong into the abyss…in a red routemaster [four-door sedan] and a kid that always questioned [stuttered]. We stole it for the feeling of stealing. And drove it like our days had been stolen…

Our wheels touched the highway we travelled on down from the valley that raised us up to shrink down. It gave us the drive to keep driving from dreary and dread, to make bets we could not afford to; Call the police! Call your shrink! Call whoever you want but I won’t stop the bus [car]! Call the police, call your priest, call whoever you want call in the National Express [National Guard] I ain’t gonna wait around, ain’t gonna wait around for some pill to kick in…”

Last month we were able to see Augustines for the 4th time, back in the O2 Academy Oxford, now just down the road having moved back. After another ‘is this really happening’ gig, Billy and the gang took to the streets (our very own Cowley Road) for an acoustic set then on to The Library pub for a final singalong. We were able to meet the band again, buy them a drink and sit with Billy into the early hours (on a school night too!). What I love about their second album is that their past experiences and grief run like a lifeline throughout, but there’s an overwhelming twist towards hope and the joy of living, especially in ‘Now You Are Free’, which I feel is mirrored by the hope and passion of this campaign.

I plucked up the courage and inspiration from #107days to ask Billy if I could share a very sad story about ‘Headlong’ with him. He listened intently and was clearly moved, drawing some parallels with his own personal story. Amazingly, Billy offered guest tickets to their final gig of the UK tour that Friday in my home city, Birmingham, along with the possibility of doing something for Connor during the gig. I explained how much that would mean to all of us and we left feeling rather stunned.

After a few emails with Billy I realised that it was quite an ask for them to change the very last UK show of their life-changing tour at last minute, especially as ‘Headlong’ was their opening song. I told him that even the offer was enough and he said he’d be around for a hug and a chat after. I don’t have to tell you that the gig was phenomenal (skipping over a brief issue with the guest tickets not being on the door!)

Ever true to his word, Billy had more time for us than I could have anticipated (possibly not out of choice?!). In tribute to Connor, I gave Billy an LB bus postcard, which I hope will travel at least as far as New York with him (photo please Billy?!) and also a little Travel West Midlands toy bus. The bus was a gift from my oldest friend, Leanne Curl (who also came to the gig) when I moved to Oxford, in memory of all the buses we shared on our long trip to school every day for 7 years. We never lost the excitement of being upstairs on a double decker (to this day!) I asked Billy to hold onto it for me as it was even more special since Connor died; it poignantly found its way onto our bathroom sink soon after 4th July and became a bittersweet reminder of our favourite dude and his bus collection. I hope it has great adventures with Billy and the band, wherever it ends up.

So this is as good a place as any to stop writing, but it is certainly not the end and Connor, my little brother, I still see you riding off into the distance on the top deck of the U1; we won’t ever stop the bus.

A huge hug and thank you to John, who keeps me smiling even when I don’t feel like it; Leanne; Sara, Richard and co; Billy and all the Augustines for being the most ‘real’ band I know. And last but never least, Laughing Boy, for everything.

You can hear Augustines for yourself singing Headlong into the Abyss and see them after their Oxford gig in two street appearances, here and here.