The more observant among you will have noticed I’ve been tweeting a bit about #JusticeforLB lately. I kind of figure that if you read this blog, or my tweets, you’re fairly used to me irritating you or over-sharing on things like death and dying. I know that’s not easy for everyone but as I’ve blogged before, I think it’s important that we don’t ignore pain and grief and that we develop a way in which we can talk openly about death and dying, if we wish to.
Last July I was absolutely horrified to read this blog post from Sara Ryan @sarasiobhan:
That’s it, the whole post. If you can bear to read more you can visit Sara’s blog and follow their story since July last year. Or better still start with this post: The day I got locked out the first one (written in May 2011), it’s worth reading from the start but you’re likely to need tissues and I wouldn’t recommend doing it at work!
The key facts are that LB (Laughing Boy – here’s why) was a fit and healthy young man, who happened to have epilepsy and autism, but was in good health. This is the same as any other young man, eighteen, with his whole life ahead of him. He was admitted to a specialist unit ran for the NHS by Southern Health NHS Foundation Trust on 19 March 2013 and he died 107 days later on July 4th. Some independence day.
The fact that a fit and health young man could drown in a bath, under the NHS Care, in the UK, in 2013 is beyond me.
You can read the full independent report into LB’s death here. It was found to be wholly preventable. It never should have happened. Many, many people have taken the time to share their thoughts on the report and the implications and you can read the commentary here.
What follows since then is almost as unbelievable. I would think if such a horrific thing happened that the least you’d expect from those responsible is that they’d hold their hands up, apologise and do absolutely everything within their gift to make things right. Sara has written some thoughts on what that might look like here. Sadly, the CEO of Southern Health has yet to be seen, declined to do media appearances and we all sit and wait for this award winning CEO (yes really HSJ NHS Chief Exec of the Year in 2012) to step up and take accountability. I’m not going to recount all the ins and outs of the last week here but you can grab a summary here.
I want to talk briefly about mama lions, privilege, pain and justice. There has been much talk over the past week of mama lions protecting their cubs. I’m not a parent, completely confident I’d not be a very good one, don’t really relate to the language or sentiment, and yet, from somewhere, I find I too have developed a sense of wrong, pain and defensiveness that I’m fairly sure would make any lion scared of my roar! I am *so* angry on Sara’s behalf, on LB’s behalf, on behalf of everyone who society has deemed is slightly less important by way of their disability, individuality, race, gender, hair colour, postcode, whatever the hell it is. My inner sense of injustice has every cell of my body in a raging roar. If I’m honest this scares me a little.
Then last week someone mentioned privilege. Like somehow Sara was ‘lucky’ because she has a privilege that allows her to fight this. Shit man, I get where that comes from, and yes she’s educated, and professional, and white, and eloquent (damn she’s eloquent while also being able to swear like a trooper), but there really aint no privilege from where I stand. Privilege flew out the window a long time ago, there isn’t any privilege when it comes to trying to get answers of how your son died, and trying to put an end to people’s deaths being ignored (see Death by Indifference for more).
Sara and her family have a long fight ahead of them. As Kay Sheldon, someone who knows a thing or two about fighting for justice, had to say earlier: Justice is hard to come by. You have to have money, nouse & resilience. Sara has nouse in buckets, resilience like few people I’ve ever known (but we should be wary because any bucket can spring a leak), when it comes to money you can help here.
Privilege does come in to play here, but maybe not in the way everyone would think. From where I’m sat if Sara, who wears that coat of privilege, who is intelligent and articulate, can be silenced and sidelined by staff. If that mother lion who fought for 18 years to raise her son and give him an amazing life, if she can’t keep her cub safe, then who the hell can? I am not for a minute inferring she could have done any more, I am in complete awe of her ability, dignity and resilience.
Sara, and many people with learning disabilities, friends, carers, strangers have added their voices to this conversation.
The regulator, Care Quality Commission, have added theirs – see the discussion at about 1hr in to their February 2014 Board Meeting (the discussion last about 15 minutes).
Where is the voice of social care? Where is the NHS? The CCG? I believe that the voices missing are those most needed. Where is the comment from the social care commissioners who somehow decided an Assessment and Treatment Unit was worth commissioning? Where is the CEO of the Trust that was responsible for LB’s preventable death? If we’re really talking about privilege, these are the people we should be levelling that at. These are the people who are on large salaries to make these decisions, where are they when they need to show some accountability? I’m not just talking about those in Oxfordshire either, most social care and health tweeps who I connect with have been shamefully quiet on this issue so far. I’m sure there’s an element of head down and hope something similar doesn’t land on your desk soon, but honestly, that’s half the problem.
Sara may have a better chance to fight this battle than some parents, or than some people with learning disabilities who have no-one to fight for them and are stuck in assessment and treatment units. But, a better chance, really? It makes no sense to me that she should need to fight at all.
At the latest count 722 people have joined the JusticeforLB campaign on twitter, all voluntarily, no salaries or union reps or workforce development opportunities here. We have no specialist media training, we have no public funds to get answers, we have no real privilege, but we have a whole heap of pain, determination and a set of values that mean we won’t give up.
In the words of Katy Perry (yeh I know, forgive me):
I used to bite my tongue and hold my breath, scared to rock the boat and make a mess.
So I sat quietly, agreed politely, I guess that I forgot I had a choice.
I let you push me past the breaking point. I stood for nothing, so I fell for everything.
I got the eye of the tiger, a fighter, dancing through the fire.
‘Cause I am a champion, and you’re gonna hear me roar.
Louder, louder than a lion,
‘Cause I am a champion, and you’re gonna hear me roar!
Please keep spreading the word about Justice for LB and do what you can to support. You can sign up for email updates here.