Short post from me today because it’s Day 2 of #JSWEC, the morning after Social Care Curry and I’ve a workshop to run later today and I’m selling VivaCards, so lots and lots of reasons why this can’t be a long or detailed post. I offer that context to also point out that this is not a well considered or reflective post, it’s just me sharing where I’m at with the world.
Last week (following Bubbgate) I wrote a post about social cares love of a false dichotomy, this week I am seeing it invested on a micro level. Last night there was a panel debate at JSWEC on A Question of Social Work. Take a look at the hashtag on twitter to get a flavour, suffice to say I was completely underwhelmed. Lots of talk about social work or academia, ‘dead’ or inspirational practice, adults or children….we’re obsessed with these bloody dichotomies, and it helps no-one.
This morning I was greeted by a tweet clearly stating that ‘Only parents see the real crisis’ this was in relation to the #JusticeforLB campaign. Maybe it was just a slip of the finger, maybe it was actually meaning what the author went on to clarify, about her own fear for her child and so on. This is real, and valid, and needs to be acknowledged. The first statement though, that’s just exclusionary. The making an issue about parents, or about LD, or about ‘insert a.n.other group’, is no different to the level of dichotomy in our debate last night.
Debs flagged this in relation to the JusticeforLB campaign ten days ago, in her post Divided we fall:
However, the one thing that continues to amaze me is the fact that so much of our strife and stress comes not from practitioners and poor systems, but from other fellow-parents or from those who are supposedly there to support us – those who should know better – not working together or judging us.
Recently, there was an amazing social media campaign: 107 days – Justice for LB. The one thing I loved most about this campaign was the absolute solidarity it created. Everyone stood with LB’s family and supported them. Everyone was working together towards the same goal. I felt proud to be part of that amazing Community. We all left egos at the door, politics and personalities didn’t matter; everyone just wanted to get on board and work together.
Then the campaign finished, making some great achievements in the process, but with it went that feeling of togetherness and a true team. We have quickly reverted back to making it about ourselves and how these thing affect us rather than thinking “wow, we managed to achieve some great things together, what next?”
The minute you start identifying as a group or tribe by any characteristic, you immediately exclude some. The minute you reduce human rights issues to a particular group issue, you immediately exclude some. The minute you make discussions about social work or research, you immediately exclude some. Maybe I’m naive (I’m fairly confident I am) but why can’t we focus on a collective whole, what we all have in common, what we want to achieve. Why can’t we talk about our work or our passions and the difference it makes, rather than our professional/personal labels?
The only future I can see is one of collective response and responsibility. As someone tweeted in the debate last night we’ve been having these conversations for about 40 years, and I dread to think how many more people need to die before something is actually changed with provision to prevent that. Final thought on this for now is from Seth Godin:
‘“Life’s too short” is repeated often enough to be a cliche, but this time it’s true. You don’t have enough time to be both unhappy and mediocre. It’s not just pointless, it’s painful’.
Taken from his book on tribes ‘Tribes: we need you to lead us’, well worth a read. Oh, and this is the only sort of camp I’d want to be on these days:
So whose up for some glamping and power planning – you’re all very welcome!
George Blogs 
The minute I heard about the death of Connor, like many other people who have son`s and daughters etc. in a support setting, I felt that gut wrenching pain as if this was my own son.
It was not helped by the fact it was in the “care” of Southern Health. I have been battling with these people for 13 years, as I have always seen that they have no real grip on the legal framework involved with people without capacity. ( like my son)
People say “well change his care” as if I had not already tried. Battling with a bullying LA and legal teams who are, as you now know are geared up to win, win, win, regardless.
Court of protection was a huge waste of time and money. We are several thousand pounds down, and they charged my son for the official solicitors fees. Plus he ( my son ) is still with a potentially ticking time bomb with S Health.
If S Health can actually be in contempt of court for breaching my court orders, by not involving me in decision making in spite of The M C Act, and still remain/ appear unconcerned about their public profile regarding the deaths of both Connor Sparrowhawk and Nico Reed, then this from a concerned parent is a major crisis.
I have also been inspired by the amount of non parents out there who feel just as angry, and we need you equally for the fight. But my point is, it is bloody scary for parents who have protected their child throughout their vulnerable life ( and I would kill for my son without question), to know that through sheer “couldn’t give a fuck attitude” from some so called badly trained support/care worker on low pay, that my son could be abused. Or worse, die.
I have been totally united with justice for LB/ Nico, and was happy to share my story with Sara on her blog “Tales from the community”. I have been humbled by her, and many others strength through this campaign. But it is hard if you are not naturally a strong person, and don’t have much “hands on” support around you, to not sometimes feel alone.
Yes the world of twitter and blogs has been wonderful in uniting like minded people who want to make for positive change, it has certainly helped me feel less invisible.
I can only hope for my son`s sake, and others that this country gets it right, and soon. It will only work if families and the “cared for” are totally involved in every aspect of planning anything about their lives.
“My life My choice” was a big waste of time, as in my experience if you have no voice, people just dump on you from a great height, just because they can.
Thanks for you thought provoking blog as always George. I’m with you on this – the more we can unite and ultimately focus on the bigger picture, the more agile and powerful we can be.
Anytime I see someone say that ‘only parents know’ I actually feel embarrassed. Am I poking my nose in where it doesn’t belong, am I overstepping the mark?
So taking that a bit further – maybe I shouldn’t worry about injustice unless it directly happens to me or my family? If that was the case, then very little in the world would change.
“The only thing necessary for the triumph of evil is for good men to do nothing”
There is a lot of work to do to bring about change we need. This isn’t something that will be changed by just one or two actions – it will be about a million conversations, awareness raising, looking at the law, looking at how we fund health and social care and so on. Many different types of people are needed to push all those conversations.
It is also about what all of us do everyday. On top of the health and social care aspect, there is plenty that society, and business in particular, could do to make the lives of people with learning disabilities and their families more equitable. If we manage to get good health and social care support in place, but fail to support career/employment aspirations, then this is just another form of unfair treatment.
These are the sorts of conversations that I would like to have, and if you tell me “I’m not a parent….” – I’ll just stand back.
Thanks again,
Fiona.
Thanks for this post George – I feel a lot of what Fiona has posted in response as well. Evokes quite a stew of emotions. The inclusivity of #justiceforLB does really stand out for me. It was/is lovely to be accepted for what I could bring to the campaign that might add to the mix without any assumptions being made about me, and the sense of being part of a kaleidoscopic community working towards a common set of goals has been very liberating. For me, this isn’t the same as everyone having to agree all the time – everyone brings something different, and there have been lots of times where I’ve changed my mind/perspective because of #justiceforLB discussions – God have I learned a lot. Fundamental to all these discussions has been openness, honesty, mutual respect and a willingness to engage with what people say, rather than being fixated on who is saying it(while respecting where people are coming from).
I’m a ‘professional’ I suppose (which both is and isn’t relevant to why I’ve got involved in the #justiceforLB campaign). I get lots of chances to get my voice heard that many other people don’t, but it’s #justiceforLB that has encouraged me to have the confidence to speak in my own voice in ways that I probably wouldn’t have done even a couple of years ago. I don’t know whether people with learning disabilities and families should have effectively a right of veto over my involvement in campaigns or not – I wibble all over the place on this one – but if I was clearly seen as part of the problem would I be doing the right thing by stopping or carrying on campaigning in some capacity? (while working in a cake shop or something similar…)
What am I trying to say? I don’t know really. The unity and mutual respect of #justiceforLB is made every day through actions and interactions – it wasn’t set down in advance. We need to keep making it every day, with confidence but not arrogance. And you do this George – we all need to make sure we keep doing it too.
George, Thanks for a thought provoking post,
I will try to be balanced in response.
I think a lot of the difficulties arise from huge imbalances in power. simple as that. The reason so many of us are fearful all to often come down to the power some people have over others.
Its a theme that has reoccurred in differing ways in the #justiceforLB discussions.
To quote Chris Hatton (above) “Fundamental to all these discussions has been openness, honesty, mutual respect and a willingness to engage with what people say”. If these qualities were a common part of our daily experiences with services life would be a lot less stressful and fearful.
We might also have a planning process which doesn’t involve things written “on the back of a breakfast”.
Chris – I’m not sure if academics and other professionals should “work in a cake shop” ( well, not unless they really like cake), but I do seriously think a lot of management level suits, (and dare I say it – senior researchers) should be obliged to do some significant person centred care / overnight / respite work as a pre-requisite – whether for promotion, as a continuing professional development etc (and in organisations other than their own.). Sometimes very basic things get overlooked – the cost of bus fares if you are on low income, the inaccessibility of basic infrastructure, the mind numbing “trying to work out how very boring everyday things are actually going to work”, de-coding multiple jargons.
A small example – I often wish I could share the effects of sleep deprivation with some of our service providers, and that brings me back to the power imbalance thing – something that is routinely part of my everyday life, that we are simply expected to deal with, would not be legal if I was being employed to provide support.
Lets not forget too, that many people, like Sara Ryan, go into academia and other relevant professions because of personal and family experiences .
#justiceforLB has been remarkable in its inclusivity and diversity, a hard to define, non-geographical community in response to the “preventable death” of a young person and the way his family have been treated. The more respectful conversations that happen from now on, between diverse groups, who listen to each other and make changes, the safer our dudes and dudettes will be.