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.
#107days 
The #107days campaign has been powerful, moving and has inspired many to stand up for disability rights.
“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.
It makes me very angry that, seemingly, some people’s lives and deaths are seemingly considered less important than others. No group of people should be thought about in this way. This is shown in the lack of care of Connor and other dudes, the indifference to their deaths, the ignoring of their wishes, the lack of progress of Winterbourne JIP and the lack of will in government. We need to make the outcry so great and persistent that government sees that to be seen to be making real change happen will win them votes. A big outcry.
My small part of #justiceforLB has been keeping a list of what has been written about him – an impressive list! In the analysis I had to introduce a new column half way through – it is called – heartbreakingly – ‘Fears of parents for LD children when relying on care’. This should not be there.
Thank you Sara for allowing me to get to know Connor. Thinking of you all today and your wonderful dude.
As a parent of 2 Autistic young adults, one of whom experienced the failings of a social care facility, I was horrified to hear of LB’s death last year. Sara’s moving blog posts and determination to get justice for her son & ensure this never happens again has been humbling and empowering. My heart mourns for a young man I never met but will never forget xxx
I have been reminded of why I have to keep on fighting for all the dudes and dudettes out there
People’s lives, homes, freedoms, relationships, choices shouldn’t be determined by their learning difficulties, autism, dementia….it’s for the State and Society to provide the support they need to live their own lives, not to lock them up, restrict their movements and cut them off from family, friends, communities, and deprive them of life.
Together we can get it right starting from now.
I have a son with Fragile X Syndrome. It is the most common inherited learning disability. Tragic news like LB’s sends shivers down my spine.
Quality of vulnerable people’s lives should be an ultimate priority by social and health services. The burocracy should never be in the way of social, health and educational care.
From personal experience vulnerable people slip through net until it’s sadly too late.
Sara and family, I have thought all day about something to say here, and I find myself with few words. You’ve heard them all. I did spend today, though, meeting with people supported by the organisation I work for, and talking with people about having a voice, and choices. LB was very much in my mind all day, and will continue to be so for a very, very long time. Best wishes doesn’t cut it – but if empathy, warmth and thoughts help, I send it by the bucket load x
The 107 day campaign has reminded me to celebrate and delight in our unique people. Sarah and the collective gathering of so many people, driving and supporting this campaign, has been truly inspirational. I have so much respect for everyone who has been involved. Ultimately the most important thing for me is that the action that has been started continues. I worry for my dudes future, like so many others, but have to believe that this change will come. I give thanks to Sarah and all that she and 107 day campaign has done during these horrendous times. May everyone have a life raft like ours or the angels Rebecca refers to.
I have thought all day about what to say here. Anything I can think of seems utterly inadequate. I have one of Connor’s prints on my office wall. It is there so that I never forget what and who is important. I am going to continue to be a passionate supporter of families and now I will shout even louder. Today has been deeply moving, the power of all these people joining together is immense. Together we can make a difference.
Difficult really to know what to put here – #107days …It’s incited my passion for people’s rights, it’s led me to realise I’m part of a greater good, a bigger thing. My role in my boy’s life cannot be made less – not by anyone. I was reading Sara’s blog before 4th July 2013 and a year ago today I cried. So wrong. So very, very wrong. Preventable and tragic. #107days has shown that families have a voice. Will continue to have a voice and I really believe things cannot go back to how they were before. I personally have learnt so much in the last 4 months. I won’t ever settle for 2nd best. Not where my boy, or other young dudes are concerned. Thank you – Sara, George and everyone else, you are awesome!
#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 little ‘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. I have a red bus postcard framed on the wall in my home. 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
I have been thinking about 107 days, all day. I hope you find justice for LB, peace for your family and a voice for all the other dudes and dudettes.
Will take away from this campaign that fighting for equality matters just as much as ever and that it is the responsibility of us all to make this happen.
#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
As a person who has always supported, cared for and/or educated some of our most vulnerable citizens it deeply saddens and infuriates me that there are people in this profession who find it in any way appropriate to negate the wishes, views and rights of family and above all else the person at the centre of all health and social care decisions. That anyone can act with what seems to be such disregard for human life is worrying but to act as such in this profession is evidently a tragedy (a wholly preventable tragedy) waiting to happen. What I take away from this is confirmation that my passionate fight for everyone of my children (that I teach) everyday is just and acceptable and adds volume to their’s and their parent’s/carer’s voice and it is exactly that that we should be listening to. Their voice.
This campaign has been both emotional and empowering. I will never forget Connor and Sara. I have Connor’s print on my wall to remind me every day that life is precious. I am the sort of person that has strong opinions and beliefs but generally very little substance to back them up. This is the first time I have been truly proactive about something I believe in and I intend to stay proactive. George, you are a legend! I am in awe of both you and Sara and reassured that there are some amazing fighters in this world. xxx
On 4thJuly I sent a texted you to arrange picking you and Connor up from the unit to take him to his school ball, I had an underlying worry that the unit would say he says he doesn’t want to go…(choice)When you texted back saying Connor had been found unconscious in the bath in the unit…. And you were on your on your way to the hospital, looking back the lack of truth had already begun !!!I
I had experienced my own child’s traumatic time in a unit and felt I may have hypercritical in my observations when visiting the unit, powerful places , but never in a million years did I think that a young dude with known epilepsy could drown in a bath in a hospital.
Through the campaign and the journeys blogged , it is so obvious that parents are not listened to for whatever reason, Your blogging is changing this,empowering parents to join forces and gain strength when fighting for the support needed for loved ones, it shows where the real expertise lies ,too many people working with our youngsters just don’t get it,and do not really understand or at times care about people with disability and all that it entails as hopefully they would there own loved ones. Sarah you may be an accidental campaigner in such tragically sad circumstances but I feel you will have made a significant impact and helped save lives of other young dudes.Such a privilege to know you and Richard xxx
Good support starts and ends with listening. Listen to the person. Listen to the people who know the person best. Listen again. Ask questions, keep listening. When you finally think you’ve heard enough, you’re wrong. Listen more.
I have felt solidarity with the other campaigners. 107 days of action gives me hope for the future.
Losing my bro and the way we have been treated afterwards changed me irreversibly. This took me to a very dark place as I found myself in a world and a health/social care system that I couldn’t look in the eye. 107 days has also changed me irreversibly but, this time, for the better. The shared vision, shared voice, shared hope and shared energy has helped me to be braver and to have courage in my conviction, even when the system around me seems intent on crushing my ideals and desperately reluctant to do-what-is-right.
I have become braver, better able to speak up and champion positive change. Willing to put my head about the parapet because I know that I will be supported, even when those I’m in dialogue with seem intent on making me feel utterly worthless and naive. I feel a presence, whenever I’m speaking up, from everyone involved in 107 days.
People with Learning Disabilities often have quiet voices and the people who care for them can sometimes feel be scared to rock the boat, in fear of losing the limited support that they have. Those of us with a voice have a duty to rock the boat when it needs rocking, not to be destructive but to shine a light on how things could be and to build a more positive future. 107 days helped me to find my voice and feel part of something bigger and better.
Nothing will bring my bro back, or Connor or Nico or any of the other dudes…but if we can achieve some justice, respect for their memory and better lives for all-the-dudes then the world will surely be a better place.
Thank you 107 days and thank you Connor for bringing us together.
A truly wonderful collection of writings and tributes. Words seem inadequate, I can only echo the heartfelt words and feelings of everyone behind #107days. And we aren’t going anywhere… Except behind commitment for change. The first change has to be the right to Legal Aid to enable the truth to be heard.
An emotional but very inspiring campaign
It’s left a place in my heart that will always stay there
I promised to help two people in similar places
The fight goes on but it’s getting there
The result will be seen in the next few months
Bless any poor. Person trapped in this crap and their loved ones
We have to make this campaign make a huge difference
Connor you have a legacy now for us all to act on
Rest in Peace while we fight on I’m your name
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